22 People Die Each Day and You Can Do Something About It.

By Bob Aronson

The population of the United States is about 320 million. Of that number 120,000 are on the national organ transplant waiting list. 22 of them die every day because there are not enough organs to go around. Numbers, just numbers. We hear them so often they are meaningless.  But the numbers aren’t meaningless to the Husband who just lost his wife because there was no kidney for her, or the child who lost her dad because there was no liver. These numbers represent human lives, You or someone you love could be one of them some day and I know that from personal experience.

I was a broadcast journalist in 1967 when Dr. Christian Barnard performed the first heart transplant in South Africa. I remember telling one of my reporter colleagues that it was a really big deal because it would someday save thousands of lives. It never occurred to me that 40 years later I’d be one of those who benefited from Dr. Barnard’s pioneering efforts.  I had a heart transplant In August of 2007

So don’t ignore those numbers because all the numbers have faces and names and feelings and they are scared and alone and in need.  Right now 22 families are grieving, many children are being told that mommy or daddy won’t be coming home again. A parent is being told their 12 year old won’t survive the night. We are talking real lives here not just numbers.  There are people out there, real honest to goodness people who just lost someone because there was no organ and they are so stricken with grief they cannot function. There are nurses and doctors who have to tell families that because there was no organ their loved one died. That means over 8,000 people die every year waiting for an organ transplant that never happens and every one of them is loved by someone. Every one of them will be missed. Many of them may have had great futures, we’ll never know because a whole lot of Americans just didn’t get around to becoming organ donors.

How can that be?  How is it that a nation of 320 million people can allow 8,000 of their friends and neighbors to die when the solution is so simple and I mean really simple. You don’t even have to leave home to do it. You don’t have to get out of your damned chair. Just open the laptop, or turn on the desktop or say, “Hi Google,” to your tablet and you will be registering in mere moments. Keep reading and I’ll explain exactly how to register and save lives and you can get to feel really good about yourself.

First, chances are pretty good that you want to become an organ donor.  You just haven’t gotten around to it yet. But, if you haven’t yet made up your mind think about this. Why take perfectly good organs to the grave with you when they could save some lives? Up to 60 lives can be saved and/or enhanced by one organ donor who is in good health.

Many organs can be used to save a life. In fact, one person has the potential has save up to eight people. Tissue donation can help more than 50 people and eye donation can restore the sight of two individuals. Here is a list of organs that can be donated: Lungs, Heart, Liver, Kidneys, Pancreas, Small intestines and skin (yes, skin is an organ).

While not organs, there are many other body parts than can be transplanted as well including Corneas, Heart Valves, Bone, Saphenous veins, Cartilage and ligaments to name a few. http://www.organdonor.gov/awareness/organizations/local-opo.html

So what’s the Problem? Well, there’s more than one. About two million people die every year but many of them are not organ donors. Also a large number of people who die have damaged and therefore non transplantable organs.

The biggest problem we face, though, is procrastination. In case you don’t know what that is it is when you see that mess in your garage and say, I’ll get to that tomorrow, but tomorrow never comes. Polls and survey’s tell us that in excess of 90% of all Americans think organ donation is a great idea, but only about 40 percent actually become donors. And in some cases, not many, but some families will object to recovering the organs from a loved one for transplantation.

So let’s ask the question again, What’s the problem? Well, sorry to say it Americans, but you might be a big part of the problem. If you are not an organ donor, why not? What good are your organs going to do if cremated or buried with your body? It’s time you not only thought about organ donation, but did something about it. If you are not a donor here are some ways you can become one.

The easiest way. Go to www.donatelife.net. You can do this one from right where you are sitting. It only takes a few minutes, then tell your family, your physician and your spiritual or religious advisor…and you are done. You can formalize the process by adding “Organ donor” to your driver’s license, but again, be sure to tell your family what your wishes are so there’s no confusion when and if the time comes.

If you are confused about the process call your local OPO (Organ Procurement Organization) There are 58 of them in the United States. For help in finding yours go to http://www.organdonor.gov/awareness/organizations/local-opo.html

Recently I had a non-organ donor tell me that while it wasn’t on his license he was still a donor. He said he had made sure that his attorney included his wishes in his will. Well, I’m not an attorney, but aren’t wills usually read after the funeral? By then it is far too late to recover organs for transplant. If you do nothing else…nothing at all…tell the loved ones in your family that you want to be an organ donor so if the time comes and they are asked they’ll be able to say, “Yes,” we know that’s what he wanted.

It is my opinion that one of the reasons people procrastinate is that they don’t see any urgency in signing up. They think, “I’m in good health, I plan on living a long time and they can’t take my organs until I am dead, so what’s the rush?  It’s a good question. I’m sure the 30 year old man whose heart beats in my chest might have had the same thought at one time, but he signed up anyway.

The point is none of us know when we are going to die. I pray that everyone who reads this leads a very long life, but that’s not reality. Some will die well before “Their Time.”

So there is an urgency, both on your part and on the part of the recipient. Can you imagine what it feels like to be on a transplant list day after day, month after month, year after year, waiting for an organ, knowing you are dying and there’s little modern medicine can do short of a transplant. Think about that…seriously think about that for a minute.

Peter Curran and his wife Ashley know what that’s like. They live in Boston. Peter has been on the list for eight (8) years. 8 years — that’s mind boggling torture for both Ashley and Peter. They are friends of mine and oh so brave and upbeat, but as time goes on Peter’s liver isnt’ getting healthier and he is spending more and more time in a hospital bed because of complications. Peter Curran needs your help. Ashley loves her husband with every fiber in her body, she is an excellent caregiver, but somehow we — all of us, the medical system, the government — everybody is failing them. Why is there no liver for Peter? It’s because not enough people are donors. If you are procrastinating or know of someone who is, remind yourself or your friends of Peter and Ashley. He can’t work, he has very little energy or stamina. He’d love to go to work again, he’d like nothing better, but right now all he and Ashley want is for someone to donate a liver that matches Peter’s needs. Seriously, is that too much to ask, I think not.

Now some people don’t donate because they believe in the many myths surrounding organ donation. So let’s take that on, too, while we are at it. Here’s’ what the American Transplant Foundation has to say about the subject:

Myth:    Age, illness or physical defects could prevent me from being a donor

Fact:      Each person’s medical condition is evaluated at the time of their death to determine what                  organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.

Myth:    If doctors know that I am registered to be an organ or tissue donor, they won’t work as hard to save my life.

Fact:      The first priority of a medical professional is to save lives when sick or injured people come to the hospital. Organ and tissue donation isn’t even considered or discussed until after death is declared.  ypically, doctors and nurses involved in a person’s care before death are not involved in the recovery or transplantation of donated corneas, organs or tissues.

Myth:    If you are rich or a celebrity, you can move up the waiting list more quickly.

Fact:      Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status are never taken into account in the allocation process. Click here for more details about organ allocation by organ type.

Myth:    After donating an organ or tissue, a closed casket funeral is the only option.

Fact:      Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

Myth:    My religion doesn’t support organ and tissue donation.

Fact:      Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

Myth:    My family will be charged for donating my organs.

Fact:      Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

If you desire more information about the facts and myths of organ donation please visit. http://www.americantransplantfoundation.org/about-transplant/facts-and-myths/

Please remember when you hear 22 people die every day waiting for an organ that the numbers have faces and names and the smile and care and hurt just like you do. Remember Peter and Ashley and the thousands just like them. Register as an organ donor and feel like a live saver.  That’s a pretty darn good benefit.

Bob Aronson is the founder of Facebook’s Organ Transplant Initiative support group and the founder and author of the nearly 300 blogs on Bob’s Newheart where you’ll find information on a wide variety of subjects related to donation and transplantation. http://www.bobsnewheart.wordpress.com

So You Need an Organ Transplant. Here’s What You Need To Know.

By Bob Aronson

(Founder of this blog site and 2007 heart transplant recipient)

This blog is longer than most because it offers one-stop access to information that should save you hours of Internet research.  We hope this single click will lead you to the answers you need and deserve. .  

When You First Learn That You Need an Organ Transplant

There is no news that is much more disturbing than being told you are suffering irreversible organ failure and that the only solution is a transplant.  The news becomes even more difficult to bear when you learn that there is a critical shortage of transplantable organs.  Most of us meet that news with stunned silence at first.  The tsunami of thoughts related to organ failure renders our brains incapable of developing a rational response or even asking the right questions.  Usually it is only after leaving the Doctor’s office that the cobwebs begin to clear, and the fear of dying starts to generate questions.  They are a trickle at first and then become a torrent as broad as Niagara falls and as long as Angel Falls.

The questions start with the first news and seem to multiply as you learn about organ donation, about lifestyle while waiting for an organ, getting on the list, the surgery, paying for it, recovery and living with a transplant.  And – because everyone is different everyone has different questions.

As a heart recipient I’ve been through that gauntlet and struggled to find answers by spending endless hours on the internet, asking questions of physicians and others and reviewing my own experience.  Below you will find a few resources to get you started.  This is not a complete list, it doesn’t even come close but it does give you links to some resources that will at least head you in the right direction.

**This blog was developed for U.S. audiences. While there may be some applicability in other countries, each nation has different laws, requirements and approaches to donation/transplantation issues.   Make no decisions until you check with experts in your country. 

Transplantable Organs and Tissue

First it is important to understand which organs and tissues are transplantable.  Here’s the list.  Organs include the heart, kidneys, liver, lungs, pancreas, and small intestines.  Transplantable tissues include blood, blood vessels, bones, bone marrow, cartilage, connective tissues, eyes, heart valves, and skin.

Most organs are recovered from deceased donors, but in the case of kidneys and a part of the liver donation can be made by living donors to specific individuals.

The following resources should either provide you with the information you seek or at least lead you in the proper direction.

If you are a kidney, heart or liver transplant patient one of the very best information resources available is, “The Transplant Experience.”  It was developed by Astellas Pharma US, Inc.  which is a manufacturer of “Prograf,“ an anti-rejection drug.   You will find answers to most of your questions on this site, but there are other very useful links as well that we include in this posting.   http://tinyurl.com/q6heovg

Another excellent source is Web MD.  http://tinyurl.com/3vst3cf

And — still another from the Mayo Clinic this stirring “Nightline” video about the process.  http://tinyurl.com/nqzomf6

Organ Donation Key Myths and Facts

According to the American Transplant Association (ATA) (http://tinyurl.com/m42br82 )  There are over 123,000 people awaiting organ transplants in the United States, but only about 28,000 are performed each year.  That’s because the supply lags far behind the demand.  While over 90% of Americans believe in donating organs only about 40% ever get around to it.  The result is that about 7,000 men, women and children die each year waiting for an organ that never comes.

Why don’t people donate?  There are as many answers as there are people, but some believe that if you are in an accident and brought to an ER the medical people will let you die in order to get your organs.  That is simply not true.   ER teams are not even associated with transplant teams and most hospitals aren’t transplant centers anyway.  The ethics that bind medical professionals demand that they do everything possible to save your life and no thought, none, is given to taking your organs.  The ER people aren’t even the ones who make that decision.

The ATA says there are other myths as well.  For example:

Myth:

If you are rich or a celebrity, you can move up the waiting list more quickly.

Fact:

Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status is never taken into account in the allocation process.

Myth:

After donating an organ or tissue, a closed casket funeral is the only option.

Fact:

Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

Myth:

My religion doesn’t support organ and tissue donation.

Fact:

Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

 Myth:

My family will be charged for donating my organs.

Fact:

Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

Organ Donation Facts

•  On average, 21 people die every day from the lack of available organs for transplant.
• Another name is added to the national transplant waiting list every 12 minutes.
• Seven percent of people on the waiting list—more than 6,500 each year—die before they are able to receive a transplant.
•  One deceased donor can save up to eight lives through organ donation and can save and enhance more than 100 lives through the lifesaving and healing gift of tissue donation.
•  Organ recipients are selected based primarily on medical need, location and compatibility.
•  Over 617,000 transplants have occurred in the U.S. since 1988.
•  Organs that can be donated after death are the heart, liver, kidneys, lungs, pancreas and small intestines. Tissues include corneas, skin, veins, heart valves, tendons, ligaments and bones.
•  The cornea is the most commonly transplanted tissue. More than 40,000 corneal transplants take place each year in the United States.
•  A healthy person can become a ‘living donor’ by donating a kidney, or a part of the liver, lung, intestine, blood or bone marrow.
•  More than 6,000 living donations occur each year. One in four donors is not biologically related to the recipient.
•  The buying and selling of human organs is not allowed for transplants in America, but it is allowed for research purposes.
•  In most countries, it is illegal to buy and sell human organs for transplants, but international black markets for organs are growing in response to the increased demand around the world. Learn more about Transplant Tourism.

Qualifying for a transplant

Transplant eligibility depends on the organ you need.  Individual transplant centers may have different criteria but the links provided here will give you some idea.

Heart Transplant Qualification

University of Maryland http://tinyurl.com/klcjbns

 Kidney Transplant Qualification

Washington University, St. Louis, Mo.  http://tinyurl.com/nefho9x

 Liver Transplant Qualification

American Liver Foundation. http://tinyurl.com/cfnh7ro

Lung Transplant Qualification

Mayo Clinic.  http://tinyurl.com/lkmbwsx

 Pancreas Transplant Qualification

Johns Hopkins.  http://tinyurl.com/qdn9sbo

 Small Intestine transplant qualification

Cleveland Clinic.  http://tinyurl.com/m5ugaul

 Getting on the U.S. National Organ Transplant List.

University of California Davis Health System. . All organ transplants in the U.S. are coordinated by the United Network for Organ Sharing(UNOS) in Richmond, Virginia. It is a blind list with no names attached to patient records to ensure the fairness of organ and tissue allocation. . http://tinyurl.com/lhwywwv

 Living with a transplant

Transplant living.  http://tinyurl.com/k2tcpc2

Paying for the Transplants and Aftercare (Financial Assistance)

(This is a lengthy section that provides a great deal of information. If you are concerned about how to pay for your transplant and follow up care read it very carefully)

Because there is a shortage of organs the odds of getting a transplant are not good, There are a lot of factors that influence whether any one person will get an available organ and one of them is the ability to pay.  Unfortunately our system is heavily weighted toward those who either have insurance or an independent ability to finance the surgery and the aftercare. A transplant and the aftercare and medication for the first year after the surgery can cost as much as a million dollars.  Sometimes even those with the ability to pay need some assistance.

Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

UNOS is the private government contractor that facilities all organ transplants in the United States.  The information in his blog is copied from their website which provides a wealth of information about the entire donation/transplantation process.  It is one of the most comprehensive resources available.  Bob’s Newheart thanks them for compiling this information and for its willingness to share it with you via our blog.

About Anti-rejection Drugs

Almost everyone who receives an organ transplant has to take immunosuppressant drugs. The body recognizes a transplanted organ as a foreign mass. This triggers a response by the body’s immune system to attack it.  These drugs diminish that attack and allow the organ to continue to function, but there are other effects as well.  This lHealthline ink will take you to a comprehensive review of these life-saving drugs..   http://www.healthline.com/health/immunosuppressant-drugs#Overview1

Funding Sources

Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.

Common funding sources to help with the costs of transplants include:

Note: This information is only a brief summary and is not intended to provide complete information. Ask your transplant financial team and your insurance provider or employee benefits officer for the latest information or help.

Private Health Insurance

You or your family may have health insurance coverage through an employer or a personal policy. Although many insurance companies offer optional coverage for transplant costs, the terms and benefits of insurance vary widely. Read your policy carefully and contact your insurance company if you have questions about how much of your costs they will pay, including your lab tests, medications and follow-up care after you leave the hospital.

Some insurance questions to consider:

• Is my transplant center in-network with my insurance company?
• If my transplant center is out-of network, do I have an out-of-network benefit for transplant?
• What deductibles will apply?
• What are my co-payments for doctor visits, hospitalizations and medications?
• Does my plan require prior authorization?
• Who needs to get prior authorization?

Regardless of how much your insurance covers, you are responsible for any costs not paid by your insurance, unless you have made other arrangements. If you are responsible for paying any or all of your insurance premiums, be sure to pay them on time so that you do not lose your coverage.

Transplant center social workers and financial coordinators can also help you with the information you need. They can contact your insurance company to check on your benefits and explain your coverage in more detail.

Experimental and Investigative Procedures

If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your center or insurance company if your  policy will cover the payment. It is important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If you still have questions, contact your insurance company, your employer’s benefits office or your state insurance commissioner.

Tips

• Keep copies of all medical bills, insurance forms and payments (or canceled checks).
• Ask your insurance company about pre-certification or using a specific provider.
• Follow the rules set forth by your insurance company so that your benefits will not be decreased.
• Always keep a log (who you talked to, date and time and questions answered) of your conversations with anyone in the hospital’s billing office or your insurance company.
• Make sure to keep your transplant center informed about your insurance, especially if you have more than one insurance company.
• For more helpful tips, see the Financial Q&A.

COBRA Extended Employer Group Coverage

If you are insured by an employer group health plan and you must leave your job or reduce your work hours, you may qualify for extended coverage through COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985). This federal law requires certain group health plans to extend coverage for 18 to 36 months after benefits end. This requirement is limited to companies employing 20 or more people. You pay the full cost of the premiums for the group health plan. Learn more by contacting your employer’s benefits office or visit the federal Department of Labor Web site >

Health Insurance Marketplace

Also known as the health insurance “exchange,” the marketplace is a set of government-regulated and standardized health care plans in the United States. Learn more at www.healthcare.gov >

Medicare

Medicare is a federal health insurance program available to people who are 65 or older, disabled or have end stage renal disease (ESRD).

Medicare, like most private insurance plans, does not always pay 100% of your medical expenses. In most cases, it pays hospitals and health providers according to a fixed fee schedule, which may be less than the actual cost. You must pay deductibles and other expenses. Medicare currently offers coverage for transplant of:

• kidneys
• kidney-pancreas
• pancreas, either after a kidney transplant or for certain indications

If you already have Medicare due to age or disability, Medicare also covers other transplants:

• heart, in certain circumstances
• lung
• heart-lung
• liver, including transplants necessitated by hepatocellular carcinoma (HCC)
• intestines

To receive full Medicare benefits for a transplant, you must go to a Medicare-approved transplant program. These programs meet Medicare criteria for the number of transplants they perform and the quality of patient outcomes.

If you have questions about Medicare eligibility, benefits, or transplant programs, contact your local Social Security office, or Medicare at 800-633-4227 or www.medicare.gov.

Medicare Prescription Drug Plans

Medicare Part D covers costs for prescription drugs. To get this coverage you must choose and join a Medicare drug plan. For more information call (800) MEDICARE ([800] 633-4227)/ TTY: (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics >Part D).

MediGap Plans

Many people on Medicare also choose to buy a private “MediGap” policy to pay for costs not covered by Medicare. Check with a local insurance agent or go to www.medicare.gov (click on Resource Locator>MediGap).

State Health Insurance Assistance Program

The State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Your transplant social worker or financial coordinator can provide information on your states SHIP program, or learn more now >

Medicaid

Medicaid is a federal and state government health insurance program for certain low-income individuals. Each state determines criteria for:

• eligibility
• benefits
• reimbursement rates

Most Medicaid programs only cover transplants performed in their state, unless there are no centers that can transplant that organ. For more information, contact your local human services department or the financial coordinator at your transplant center.

Charitable Organizations

Charitable organizations offer a range of support, from providing information about diseases, organs and transplants, to encouraging research into these diseases and treatments.

Also, although it is very unlikely that one organization can cover all of the costs for an individual patient, some organizations provide limited financial assistance through grants and direct funding. For example, an organization may only be able to help with direct transplant costs, food and lodging or medication costs.

Advocacy Organizations

Advocacy organizations advise transplant patients on financial matters. If you agree to a financial arrangement with an advocacy organization, it is important to make sure that the funds are available in a manner that suits your needs. You may even want legal assistance in reviewing a written agreement before signing. Your bank can also help you review the arrangement.

Every advocacy organization should be able to provide supporting information and background documentation to prove they are legally recognized to help those in need. Brochures and other background information should never serve as substitutes for these documents. Ask advocacy organizations to provide you with copies of the following documents:

• a current federal or state certification as a charitable, non-profit organization
• a current by-laws, constitution and/or articles of incorporation
• a financial statement for the preceding year, preferably one that
• an audit report from an independent organization
• references

Fundraising Campaigns

Even if you have coverage for transplant, fundraising is a good path to take to assist with costs not covered by insurance, such as prescriptions and temporary housing. It is also a great way for your family and friends to be involved with your care.

Asking for help is perfectly okay, and you may find that many of your loved ones will step forward to support your fundraising campaign. If you do decide to raise funds, it is best to do it before your transplant, as the money raised will help you budget for your medical expenses.

Before you begin seeking donations, it may be necessary to check with your city/county governments, legal advisor or transplant team about the many legal and financial laws and guidelines.

If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers, radio or television stations to help support your cause. In addition, try to enlist the support of local merchants and other sponsors to promote or contribute to your events. Your friends, neighbors, religious groups, local chapters of volunteer or service groups and other community groups may also be able to help.

It is also very important to understand that the funds you raise only be used for your transplant-related expenses and donated money sometimes has to be counted as taxable income. In cases in which money must be counted as income, you may lose your Medicaid eligibility.

These organizations can help you plan your fundraising campaign:

Children’s Organ Transplant Association (COTA)

Help HOPE Live  (Formerly the National Transplant Assistance Fund (NTAF)

National Foundation for Transplants

TRICARE (formerly Champus) and Veterans Administration

Government funding for families of active-duty, retired, or deceased military personnel may be available through TRICARE. TRICARE standard may share the cost of most organ transplants and combinations. TRICARE also covers living donor kidney, liver, and lung transplants. Patients must receive pre-authorization from the TRICARE medical director and meet TRICARE selection criteria. Pre-authorization is based on a narrative summary submitted by the attending transplant physician. For more information about TRICARE, contact the health benefits advisor at your nearest military health care facility, call the TRICARE Benefits Service Branch at (303) 676-3526 or learn more now >

 

The National Marrow Donor Program is also a resource for information on where to get financial assistance.  They offer this advice.

Transplant insurance coverage.  These items may not be covered by your insurance.  Check to be sure.

You or someone you know might need an organ/tissue transplant you must show an ability to pay before you will be accepted by most transplant centers.  Most people rely on insurance but insurance policies differ from one company to the next.  Be sure about what your policy covers, talk to your plans benefits manager or to the hospital social worker to get a clear idea of what is covered.

It is very likely that the following items are NOT COVERED by your health insurance company.  This information was generated by the National Marrow Donor Program.  http://tinyurl.com/b8pb4s4 

You may want to ask if the following items are covered by your specific health insurance plan:

• Testing to find a matched unrelated or related donor
• Donor costs
• Transplants for a rare diagnosis
• Travel and lodging expenses to and from the transplant center for patient and/or caregiver
• Food costs while staying near transplant center
• Parking costs
• Prescriptions for post-transplant discharge or outpatient medications
• Office visits coverage
• Home health care
• Psychiatric coverage
• IV injections
• Clinical trials
• Sperm/egg storage
• Insurance premiums when patient is not employed
• Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
• Change in cost of living after transplant (different food needs, for example)
• Child-care costs

If your insurance does not cover all of your costs related to transplant, you may be eligible for Financial Assistance for Transplant Patients.

Financial assistance for transplant patients

Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations.

Planning for transplant costs

• Insurance and transplant coverage
• Financial assistance for transplant patients

Applying for financial aid programs may include many steps. Your transplant center social worker will help you find financial aid that is available through Be The Match^® and other organizations, and help you complete the applications.

Be The Match financial aid programs

Be The Match financial assistance is available for patients who are searching for a donor on the Be The Match Registry^®, or who have had a bone marrow or cord blood transplant with a donor from the registry.  Financial assistance from these programs can help you pay for the cost of a donor search and for some post-transplant expenses. Talk with your transplant center financial coordinator to see if you are eligible for these programs.

*Funds for financial aid programs are available through the generous contributions to Be The Match.

Transplant costs worksheet can help you calculate the transplant costs not covered by insurance.

Search Assistance Funds

Search Assistance Funds can help pay the costs not covered by insurance for searching Be The Match Registry of unrelated adult donors and cord blood units. If you are eligible, Be The Match will notify the transplant center. This allows your donor search process to begin as quickly as possible.

To be eligible:

• You are searching for an unrelated donor or cord blood unit from the Be The Match Registry.
• Your transplant center has determined you do not have enough insurance coverage to cover the donor search costs.
• You must be a U.S. resident.

Transplant Support Assistance Funds

Transplant Support Assistance Funds help pay for some costs during the first 12 months after transplant that are not covered by your insurance. These funds can be helpful with costs related to:

• Temporary housing, if you and your family or caregiver needs to relocate for the transplant.
• Food for you and your family or caregiver.
• Parking and gas for ground transportation.
• Co-pays for prescriptions and clinic visits.

To be eligible:

• You have had a transplant using an unrelated donor or cord blood unit from the Be The Match Registry.
• You must be within the first 12 months of your transplant.
• You meet financial eligibility criteria.
• You must be a U.S. resident.

ExploreBMT is a resource to connect you and your family with financial support and information from organizations you can trust.

Other financial aid programs

There are several more financial aid programs available to help you with your transplant costs. Ask your transplant center social worker to help you identify and apply for programs that you may be eligible for, including Be The Match financial aid programs.

The importance of Caregivers in Transplantation

One cannot overestimate the importance of having a compassionate, organized and committed caregiver following a transplant.  For a while at least, the patient may be able to do very little for him or herself and will need varying degrees of care.  At first it will be important to make sure the patient gets to Clinic appointments, takes the appropriate medications at the right times, attends rehab sessions and follows dietary recommendations.  Many transplant centers won’t consider the surgery unless such a person is in place and committed to the patient.  This link should help those who agree to perform this most important function  http://tinyurl.com/lnq4vk9

While this may be a lengthy piece it only scratches the surface of resources available to transplant patients and their families.  If you have suggestions for additions, deletions or edits please contact bob@baronson.org the founder of this blog site.

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Thank you donors and donor families

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

The Greatest Public Health Threat is Here Now — Antibiotic Resistant Diseases

By Bob Aronson

Antibiotics and drugs called antimicrobial agents have been used for the last 70 years to treat patients with infectious diseases who might genotherwise have died.  Unfortunately these “Miracle” drugs were used for such a long time and so indiscriminately that the organisms they were designed to kill have mutated and become more resistant to them. In some cases the drugs don’t work at all anymore.

Each year in the United States, at least 2 million people become infected with antibiotic resistant bacteria and at least 23,000 of them die as a result. While 23,000 is a significant number it does not even come close to being in the catastrophic category so there’s not much media attention given to the problem  – until now and this headline.

Is Antibiotic resistance: the greatest public health threat of our time?

This is not the stuff of science fiction.  It is real and it is supported by both the World Health Organization (WHO) and by the U.S. Centers For Disease Control in Atlanta, Georgia (CDC)

The WHO says we are in a “post-antibiotic era”, in which even the most minor bacterial infections could mean death, a statement made true because of antibiotic misuse, overprescribing and poor diagnoses.

A world without antimicrobials would be a world without modern medicine, so why is there not more urgency in addressing the global rise of drug resistance? The New Statesman brought leading health experts together to discuss the problem. http://www.newstatesman.com/sci-tech/2014/07/antibiotic-resistance-greatest-public-health-threat-our-time

Antibiotic-resistant infections can happen anywhere. The CDC says that most of them happen in the general community; however, most deaths related to antibiotic resistance happen in healthcare settings such as hospitals and nursing homes.  http://www.cdc.gov/drugresistance/threat-report-2013/index.html

 The Threat to You

Diseases that either are or are becoming antibiotic resistant http://www.cdc.gov/drugresistance/DiseasesConnectedAR.html

A growing number of disease-causing organisms or pathogens, are resistant to one or more antimicrobial drugs—including the bacteria that cause tuberculosis, the viruses that cause influenza, the parasites that cause malaria, and the fungi that cause yeast infections.  All are becoming resistant to the antimicrobial agents used for treatment.  Curious about other diseases that may not respond to your antibiotics?   Here’s a partial list from the CDC.  The full list can be seen by clicking on the above link.

Acinetobacter is a type of gram-negative bacteria that is a cause of pneumonia or bloodstream infections among critically ill patients. Many of these bacteria have become very resistant to antibiotics.

Anthrax

Anthrax is a serious disease caused by Bacillus anthracis, a bacterium that forms spores. Anthrax most commonly occurs in wild and domestic mammalian species, but it can also occur in humans when they are exposed to infected animals or to tissue from infected animals or when anthrax spores are used as a bioterrorist weapon. Some strains of B. anthracis may be naturally resistant to certain antibiotics and not others. In addition, there may be biologically mutant strains that are engineered to be resistant to various antibiotics.

Carbapenem resistant Enterobacteriaceae

Untreatable and hard-to-treat infections from carbapenem-resistant Enterobacteriaceae (CRE) bacteria are on the rise among patients in medical facilities. CRE have become resistant to all or nearly all the antibiotics we have today. Almost half of hospital patients who get bloodstream infections from CRE bacteria die from the infection.

Gonorrhea

Neisseria gonorrhoeae causes gonorrhea, a sexually transmitted disease that can result in discharge and inflammation at the urethra, cervix, pharynx, or rectum.

Group B streptococcus

Group B Streptococcus (GBS) is a type of bacteria that can cause severe illnesses in people of all ages, ranging from bloodstream infections (sepsis) and pneumonia to meningitis and skin infections.

Methicillin-resistant Staphylococcus aureus (MRSA)

Methicillin-resistant Staphylococcus aureus (MRSA) causes a range of illnesses, from skin and wound infections to pneumonia and bloodstream infections that can cause sepsis and death. Staph bacteria, including MRSA, are one of the most common causes of healthcare-associated infections.

Salmonella, non-typhoidal serotypes

Non-typhoidal Salmonella (serotypes other than Typhi, Paratyphi A, Paratyphi B, and Paratyphi C) usually causes diarrhea (sometimes bloody), fever, and abdominal cramps. Some infections spread to the blood and can have life-threatening complications.

Shigella

Shigella usually causes diarrhea (sometimes bloody), fever, and abdominal pain. Sometimes it causes serious complications such as reactive arthritis. High-risk groups include young children, people with inadequate hand washing and hygiene habits, and men who have sex with men.

Streptococcus pneumoniae

Streptococcus pneumoniae (S. pneumoniae, or pneumococcus) is the leading cause of bacterial pneumonia and meningitis in the United States. It also is a major cause of bloodstream infections and ear and sinus infections.

Tuberculosis

Tuberculosis (TB) is among the most common infectious diseases and a frequent cause of death worldwide. TB is caused by the bacteriaMycobacterium tuberculosis (M. tuberculosis) and is spread most commonly through the air. M. tuberculosis can affect any part of the body, but disease is found most often in the lungs. In most cases, TB is treatable and curable with the available first-line TB drugs; however, in some cases, M. tuberculosis can be resistant to one or more of the drugs used to treat it. Drug-resistant TB is more challenging to treat — it can be complex and requires more time and more expensive drugs that often have more side effects. Extensively Drug-Resistant TB (XDR TB) is resistant to most TB drugs; therefore, patients are left with treatment options that are much less effective. The major factors driving TB drug resistance are incomplete or wrong treatment, short drug supply, and lack of new drugs. In the United States most drug-resistant TB is found among persons born outside of the country.

Typhoid Fever

Salmonella serotype Typhi causes typhoid fever, a potentially life-threatening disease. People with typhoid fever usually have a high fever, abdominal pain, and headache. Typhoid fever can lead to bowel perforation, shock, and death.

Vancomycin-Intermediate/Resistant Staphylococcus aureus(VISA/VRSA)

Staphylococcus aureus is a common type of bacteria that is found on the skin. During medical procedures when patients require catheters or ventilators or undergo surgical procedures, Staphylococcus aureus can enter the body and cause infections. When Staphylococcus aureus becomes resistant to vancomycin, there are few treatment options available because vancomycin-resistant S. aureus bacteria identified to date were also resistant to methicillin and other classes of antibiotics.

Malaria

Malaria is a mosquito-borne disease caused by a parasite. People with malaria often experience fever, chills, and flu-like symptoms. The development of resistance to drugs poses one of the greatest threats to malaria control and has been linked to recent increases in malaria morbidity and mortality. Antimicrobial resistance has been confirmed in only two of the four human malaria parasite species, Plasmodium falciparum and P. vivax.

 WHO: Antibiotic Resistance Now a ‘Major Threat to Public Health’

Antibiotics are powerful tools for fighting illness and disease, but their overuse has helped create bacteria that are outliving the drugs used to treat them.

Antibiotic resistance is a quickly growing, extremely dangerous problem. World health leaders have described antibiotic-resistant bacteria as “nightmare bacteria” that “pose a catastrophic threat” to people in every country in the world. Many more people die from other conditions that were complicated by an antibiotic-resistant infection.

In addition, almost 250,000 people who are hospitalized or require hospitalization get Clostridium difficile each year, an infection usually related to antibiotic use. C. difficile causes deadly diarrhea and kills at least 14,000 people each year. Many C. difficile infections and drug-resistant infections can be prevented.

How Bacteria Become Resistant

When bacteria are exposed to antibiotics, they start learning how to outsmart the drugs. This process occurs in bacteria found in humans, animals, and the environment. Resistant bacteria can multiply and spread easily and quickly, causing severe infections. They can also share genetic information with other bacteria, making the other bacteria resistant as well. Each time bacteria learn to outsmart an antibiotic, treatment options are more limited, and these infections pose a greater risk to human health.

Infections Can Happen to Anyone, Anywhere

Anyone can become infected with antibiotic-resistant bacteria anywhere and anytime. Most infections occur in the community, like skin infections with MRSA and sexually transmitted diseases. However, most deaths related to antibiotic resistance occur from drug-resistant infections picked up in healthcare settings, such as hospitals and nursing homes.

 What you can do to protect yourself against drug-resistant infections

 Bob’s Newheart is providing two answers to this question.  The first from the CDC and the second from a panel of physician experts who were interviewed for the PBS TV show, Frontline.

 CDC Advice

 There are many ways you can help prevent the creation and spread of resistance. First, when you are sick, do not demand antibiotics from your doctor or take antibiotics that were not prescribed to you directly for your specific illness. When taking antibiotics, do not skip doses, and make sure to follow the directions about dose and duration from your doctor.

Second, like all diseases, common safety and hygiene methods can prevent disease and spread. Make sure to:

• Get updated and regular vaccinations against drug-resistant bacteria
• Wash your hands before eating and after using the restroom to avoid putting drug-resistant bacteria into your body
• Wash your hands after handling uncooked food to prevent ingesting drug-resistant bacteria that can live on food
• Cook meat and poultry thoroughly to kill bacteria, including potential drug-resistant bacteria

What healthcare providers can do to protect patients from drug-resistant infections (CDC)

There are many ways to help provide the best care to your patients while protecting them against antibiotic-resistant infections.

• Follow all necessary infection control recommendations, including hand hygiene, standard precautions, and contact precautions.
• Diagnose and treat resistant infections quickly and efficiently. Treatment options change often because resistance is complex. Make sure to follow the latest recommendations to ensure you are prescribing appropriately.
• Only prescribe antibiotics when likely to benefit the patient, and be sure to prescribe the right dose and duration.
• Be sure to clearly label dose, duration, and indication for treatment, and include appropriate laboratory diagnostic tests when placing antibiotic orders. This will help other clinicians caring for the patient to change or stop therapy when appropriate.
• Take an antibiotic time out, reassessing therapy after 48-72 hours. Once additional information is available, including microbiology, radiographic, and clinical information, a decision can be made on whether to continue the same therapy.
• When transferring patients, ensure the other facilities are notified of any infection or known colonization.
• Keep tabs on resistance patterns in your facility and in the area around your facility.
• Finally, encourage prevention methods with your patients. Make sure they understand how to protect themselves with vaccines, treatment, and infection control practices such as hand washing and safe food handling.

From PBS “Frontline”

 Eight Ways to Protect Yourself from Superbugs

http://www.pbs.org/wgbh/pages/frontline/health-science-technology/hunting-the-nightmare-bacteria/eight-ways-to-protect-yourself-from-superbugs/

October 22, 2013, 9:32 pm ET by Sarah Childress

Everyone is at risk of becoming infected by drug-resistant bacteria, especially as some have begun to appear outside of hospitals in the general community. So how worried should you be?

The PBS investigative show, “FRONTLINE” asked three infectious disease doctors these questions: what the risks are, how to protect yourself, and what questions to ask when a loved one is in the hospital.

Dr. Sean Elliott is the medical director of infection prevention at the University of Arizona Health Network

Dr. Brad Spellberg is an infectious diseases specialist at Harbor-UCLA Medical Center

Dr. Wendy Stead is an infectious diseases specialist at Beth Israel Deaconess Medical Center in Boston

Frontline condensed their advice into eight handy tips to help keep bugs at bay.

Of course, none of this substitutes for actual medical advice. For serious concerns, always consult your doctor.

 1. Don’t Panic

Everyone may be at risk, but the chances of catching a drug-resistant bug outside of the hospital are small for most. “For the average healthy person walking down the street?  Those organisms are not much of a threat,” Stead says.

“The first principle is to try to live a healthy lifestyle to reduce the need to be in the hospital” where you are more likely to encounter these bugs, Spellberg says. Keep your home and work space clean. Be aware of the food you eat: Wash fruits and vegetables carefully and cook other food properly to reduce your chance of coming into contact with harmful bacteria.

2. Know What to Look For

How do you know if you have a superbug?

“You don’t.  And your doctor won’t either, at least at first,” Spellberg said. “The infections caused by antibiotic-resistant bacteria do not cause different symptoms than infections caused by antibiotic-susceptible infections.”

While it’s impossible to give broad advice about so many different kinds of bacteria — and if you’re concerned, you should call your doctor first — there are some signs that an illness might be more serious. “In general, fevers, if they’re accompanied by shaking chills, if they’re getting worse instead of better, that would suggest there’s a bacterial process,” Elliott said.

With community-acquired MRSA, many people first notice a skin infection or boil that becomes larger and more painful, Stead says.

But if you do suspect such an infection, don’t rush to the emergency room, where you might be exposed to other bugs or infect others. Call your primary-care doctor first for advice.

3. Wash Your Hands with Soap and Water. Really wash them. Doctors say they cannot recommend this enough.

 “Wash your hands regularly and religiously in the normal times that you would think you should wash them,” Stead says. “Give it a good amount of time” — about 15 seconds — “scrubbing hands thoroughly, not just in and out of the water.”

Turn off the faucet using a paper towel.

Alcohol-based hand-sanitizers are handy too, but remember that one bug, C.Diff, is resistant to that as well. But it does respond to soap and water. So Wash. Your. Hands.

4. Be Careful with the Antibacterial Soap

 The FDA hasn’t determined whether these soaps are more effective than regular soap, and some doctors don’t recommend using them. “You do not need to take ‘antibacterial’ soaps for routine use,” Spellberg says. “There may be specific medical circumstances that warrant special antibacterial cleansers, but these should be prescribed by your physician.”

“A lot of the antibacterial soaps are more drying to the skin than would be a simple soap,” Elliott says. “So the more that we break down our skin barriers the higher the risk of getting superimposed bacterial. The real key is the soap and water and the physical action  — and keeping hands moisturized. “

5. Ask Your Doctors to Wash Their Hands

“It is every patient’s right to have every health-care provider entering the room to have clean hands,” Elliott says. “We’re supposed to do it, we mandate 100 percent hand- hygiene compliance, but the reality is that doesn’t happen,” he says.

Some hospitals even make health-care providers wear buttons encouraging patients to ask them if they’ve washed their hands. Even if they’re buttonless, you should feel free to ask your providers about it.

“Really — we are not offended by that,” Stead says.

6. Get A Flu Shot

“When people get influenza, they actually become at higher risk as they recover for complicating bacterial infections,” Stead says, because people with weakened immune systems are more vulnerable to other bugs.

“Community-acquired MRSA is a big risk in patients who have recently had influenza,” she notes. “They get influenza and they start to get better, and then the staph comes in. … That’s life threatening.  They wouldn’t have been at risk for that if they hadn’t had influenza in the first place.”

7. Ask Whether You Need that Antibiotic

 Doctors sometimes feel pressured by patients or their families to prescribe an antibiotic, even if it’s not necessary. Don’t assume you need one — antibiotics don’t work on viral infections like colds or the flu. If your doctor does recommend one, ask whether you really need it.

“Using antibiotics does kill off non-resistant bacteria in your body and makes you likely to acquire antibiotic-resistant bacteria in their place,” Spellberg says. “If your doctor says that they think your infection is probably caused by bacteria and that you do need an antibiotic, ask, ‘Do I need a broadly active antibiotic, or can I take a narrower antibiotic?’ The broader the antibiotic, the more damage to your normal bacteria can be caused. We want physicians to try to prescribe antibiotics that are as narrow as possible for a given infection.”

8. Advocate for Loved Ones in the Hospital

 One of the ways drug-resistant bacteria spreads in hospital is through tubes inserted in the body, such as catheters. If someone you care about is on such a device, don’t be afraid to ask doctors whether they still need it, and when the tubes can come out.

“Hospitals are much more aggressive about removing things if they’re not needed anymore,” Stead says. “But having patients be aware and try to get things out too is good.”

“Every day that decision needs to be made: Do these things need to stay in or do they need to come out?” Elliott says. The key, he says, is “empowering patients or their advocates to stand up for their health-care needs.”

Conclusion

While physicians and health care workers have a responsibility to provide the best health care, patients also have some responsibility for their own well-being and it boils down to being informed and not being afraid to ask tough questions.

Most of us don’t like challenging physicians, we just assume that will all those many years of education and the raft of framed diplomas on the wall that they must know what they are doing, but the practice of medicine is as much art as it is science.  That means even highly educated medical experts can come to the wrong conclusions, so it is extremely important for patients to expand their knowledge of the conditions to which they are exposed or have contracted, ask tough, knowledgeable questions and then, demand clear unequivocal answers. Doing so could mean the difference between life and death.

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 Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.

Bob’s Newheart was established to support and help everyone, but particularly those who need or have had organ transplants.  Some of our blogs are specifically related to donation/transplantation issues while others are more general, but they are all related.  Because anti-rejection drugs compromise immune systems, transplant recipients are more susceptible to a variety of diseases.  We provide general health and medical information to help them protect themselves while at the same time, helping others live healthier lives and avoid organ failure.

Bob’s Newheart mission is three-fold; 1) to provide news and information that promotes healthier living so people won’t need transplants; 2) To help recipients protect their new organs and; 3) to do what we can to ensure that anyone who needs an organ can get one.   About 7,000 Americans die every year while waiting for a life-saving organ.  I am sure you will agree that should not happen.

In the U.S. the great majority of people support organ donation, but only about 40% of us officially become organ donors.  Many have good intentions but just don’t get around to it.  It is hard to accept, but no one knows how long they will live.  My transplanted heart came from a 30 year old man.  I’m sure he had no intention of being a donor at that age.  If you are not yet a donor, please register at www.donatelife.net it only takes a few seconds. Then, tell your family so there is no confusion when the time comes to donate.  One organ donor can save or positively affect the lives of up to 60 people.  There is no nobler thing you can do than becoming an organ donor.

Bob Aronson

Founder of Bob’s Newheart

Established November 3, 2007

Brain Death, Organ Donation and Family Disagreement –How Is It Handled?

A note from Bob Aronson

This account of the organ donation process was published by the American Medical Association in 2005.  While some of the information is dated the process described here is for the most part still followed in most states by medical professionals and Organ Procurement Organizations (OPOs).

This story is a very graphic description of the difficulties that organ transplant representatives can face when a patient is declared brain dead and is found to have a donor card in their wallet.  The biggest change since this account was published is that most states have passed laws that allow OPOs to proceed with organ recovery with or without family consent if the donor is registered as such.  It is also true, though, that many OPOs still ask families to honor their loved one’s wishes and although rare, some families object.

I have worked very closely with OPOs in the past and can testify first hand to the great amount of preparation and training their people experience in order to handle situations just like the one described here.  The OPO people who contact families when a loved one is dying or declared brain dead are very special people endowed with natural compassion and empathy.  I am in awe of these professionals who daily are called upon to explain to grieving families how their gift of life can help so many 0thers.

This is our last blog of 2013.  It is fitting that we close the year honoring OPOs and the many wonderful people who work so hard to save lives and bring comfort to grieving families.

On behalf of Bob’s Newheart and Organ Transplant Initiative on Facebook we say thank you OPOs you are doing God’s work and we appreciate your professionalism and compassion.  Personally I offer my most sincere gratitude from the bottom of my donor’s heart.

Family Disagreement Over Organ Donation

American Medical Association

Virtual Mentor. September 2005, Volume 7, Number 9.

Clinical Cases

Commentary by Douglas W. Hanto, MD, PhD, Thomas G. Peters, MD, and by Richard J. Howard, MD, PhD, and Danielle Cornell, BSN

The sound of Sam’s pager suddenly awakens him. A third-year medical student, Sam is in the midst of his trauma surgery rotation. He rushes to the trauma department and learns that his next patient, Justin Lewis, is a 20-year-old male who was in a major automobile accident. Tested en route to the hospital, Justin had a Glasgowcoma scale score of 3. As Justin is brought to the trauma room, the paramedics tell the attending physician, Dr. Hardy, what they know about the accident. According to the EMTs, Justin fell out of a car that was traveling 70 miles per hour and landed on this head. After an extensive emergency room workup, Justin is declared brain dead. Prior to disconnecting him from the ventilator, the ER staff discovers that he has an organ donor card in his wallet. Familiar with the organ donation procedures, Sam calls the organ procurement agency while Dr. Hardy tells Justin’s family the news.

An hour later, Mr. Sterling, a representative from the organ procurement organization arrives at the hospital and introduces himself to the family. Justin’s father tells Mr. Sterling that his son definitely wanted to donate his organs, but Justin’s mother interjects. She is adamantly opposed to anyone’s taking organs out of her son.

Meanwhile, Sam asks Dr. Hardy what the plan for the patient is. Dr. Hardy says that Justin will remain on mechanical ventilation until a final decision is made regarding donation of his organs.

Commentary 1

by Douglas W. Hanto MD, PhD

When the death of a patient is imminent or has occurred, as in the case of Justin, all hospitals that receive Medicare and Medicaid dollars are required by the Conditions of Participation published by the Centers for Medicare and Medicaid Services to have protocols in place for notifying the local federally designated organ procurement organization (OPO). This notification is mandatory whether the patient has a signed organ donor card or not. In Justin’s case, even if the ER staff had not found an organ donor card in his wallet, Sam would have been correct in calling the OPO. The OPO determines the medical suitability of the potential donor and usually sends a trained organ donation coordinator to the hospital to review the patient’s records, speak to the family, clarify health-related information, and request permission for organ donation. Some OPOs have specially trained family counselors who request permission for donation from the family. If the family gives permission, the donation coordinator assumes the medical management of the donor, and all medical costs from the time of declared brain death are billed to the OPO, not to the patient’s insurance or family.

The refusal of families to grant permission is a major impediment to organ donation. Several factors have been shown to improve family consent rates. First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death. In this case, Justin’s mother may simply need more time to adjust and accept the death of her son. Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family. Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures arefollowed [1].

Even when a patient has a signed organ donation card, the OPO oftenseeks family permission to proceed with donation. The Uniform Anatomical Gift Act (1968, revised 1987) established that a signed organ donation card is sufficient to proceed with donation, and it has been confirmed recently that such documents function legally as advance directives. In the UnitedStates, however, it is customary for the OPO to request permission from the next-of-kin due to fear of litigation.

Recently, several states have passed legislation establishing “first-person consent” whereby the family cannot override an individual’s documented desire to be an organ donor. Some states have established first-person consent registries for people interested in being deceased organ donors. This is based on the strong belief that the donor’s wishes should be adhered to. It is not dissimilar to a last will and testament that disposes of our personal property and assets after we die. Each year more states are passing first-person consent laws that are strongly supported by the OPOs and the transplant community.

Had Justin died in a state with first-person consent laws, the OPO would have informed the family of his pre-existing declaration to be an organ donor and would not have sought the family’s permission. First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families whomade a decision themselves and declined to donate the organs subsequently regretted their decision [2].

In a case such as this one, where the mother and father disagree about organ donation, the donation coordinator would ask the mother why she was opposed to donation and would try to address her specific concerns. The coordinator would emphasize that her son had expressed a desire to donate and that his gift could save and improve the lives of several seriously ill patients. The coordinator would also try to dispel any myths about organ donation that Justin’s mother might have heard. It is important for her to understand that her son’s body will not be disfigured and that donation will not affect funeral arrangements or viewing of the body. Often times a hospital social worker or pastoral care representative can be called to counsel the family and resolve their disagreement. One of these individuals might have been able to help Justin’s mother agree to donation.

Because of the continued shortage of organs for transplantation, it has been argued that we should go beyond first-person consent and adopt the principle of “presumed consent.” Presumed consent has been legislated by many European countries with a resulting increase in organ donation rates [3]. Presumed consent is an “opt-out” policy in which everyone is considered an organ donor unless he or she registers opposition. This process contrasts with our current, “opt-in” system, in which the individual or next-of-kin must give explicit consent for organ donation. Individual choice is not removed in either case, but persons opting out have the additional responsibility of documenting their decisions. A recent analysis showed that the opt-out countries had a much higher organ donation rate than opt-in countries [4]. And in an online experiment, responders’ decisions about organ donation were dramatically influenced by whether the question was presented as an opt-in or opt-out choice; rates for donation doubled when the default position was opting out and documentation was needed to opt in; that is, to donate.

Once permission has been obtained, the donor is managed medically to maintain optimal organ function [5]. All organs are evaluated for their suitability for transplantation, the donor is screened for infectious diseases (eg, hepatitis, HIV), and blood and tissue types are obtained. The donor information is then entered into the national computer database maintained by UNOS (United Network for Organ Sharing) where it is matched with wait-listed patients. The computer produces a list of the potential recipients for each of the organs ranked by priority as determined by national organ allocation policies. At that point, the donor coordinator calls the transplant centers where prospective recipients are listed to ensure a recipient will be available and waiting for the organ. The organs are then removed in the hospital operating room, often by several surgical teams from different transplant centers in a manner that is respectful of the decedent and his or her family. The young patient in this case could potentially donate his heart, both lungs, liver, pancreas, both kidneys, and small intestine for transplantation,thereby benefiting as many as 8 recipients. He could help many more patients by being a tissue donor (corneas, skin, bone, blood vessels) as well. Many times families report great satisfaction after organ and tissue donation from knowing that so much good can result from so much pain.

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References

1. Gortmaker SL, Beasley CL, Sheehy E, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord. 1998;8:210-217.
2. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care. 1998;7:13-23.
3. Gundle K. Presumed consent: an international comparison and possibilities for change in the United States. Camb Q Healthc Ethics. 2005;14:113-118.
4. Johnson EJ, Goldstein DG. Defaults and donation decisions. Transplantation. 2004;78:1713-1716.
5. Wood KE, Becker BN, McCartney JG, D’Alessandro AM, Coursin DB. Care of the potential organ donor. N Engl J Med. 2004;351:2730-2739.

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Douglas W. Hanto, MD, PhD, is the Lewis Thomas Professor of Surgery at Harvard Medical School and chief of the Division of Transplantation at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Commentary 2

by Thomas G. Peters, MD

Patient-centered ethical dilemmas often arise in a trauma surgery rotation. For the medical student, a sudden and perplexing ethical dilemma may actually open the door to solving certain clinical problems and issues of family interaction.

In this case, there is no question that the patient, a 20-year-old man who sustained a massive head injury, is dead. With cardiorespiratory function being sustained artificially, the emergency room and trauma surgery staff have appropriately assessed the patient, tested and ruled out any possibility of survival, and determined the hopelessness of the patient care situation. With such a dire determination, however, comes new promise: helping others by way of organ donation. The student is a witness not only to the consequences of severe trauma, but also to the process of consent for organ donation.

The case narrative indicates that the patient, Justin, carried what we presume is a recognized legal organ donor card. Such a document is generally believed to be sufficient to go forward with organ donation. Some states including Florida, Pennsylvania, and Texas, have determined that the organ donor card is an end-of-life document that is afforded as much standing as a will or advance health care directive. Therefore, the issue of consent and legality of organ donation should not be a dilemma considering that a 20-year-old man is past the age of majority—18—in most states.

A dilemma does arise, however, because Justin and his father favor organ donation, but his mother does not. She is adamantly opposed to anyone removing organs from her son, and the story appears to end with the attending physician noting that mechanical ventilation and other support measures will be carried on until an agreement is reached regarding organ donation.

The best-known way to prevent the conflict between the mother and the father is for families to discuss organ donation before any tragedy occurs. Consent disagreements almost never arise when a family has talked about the idea of postmortem organ donation and the intentions of family members are fully understood by all.

It appears, however, that no such discussion took place between Justin and his parents, so the medical staff faces a dilemma: whether or not to maintain mechanical and artificial support, which use critical hospital resources, while the family is further counseled regarding organ donation. In fact, most acute care units have experienced similar circumstances, and giving time to grieving families in the final hours of life, whether organ donation is to occur or not, is not unusual. So, support might be continued for several hours during which resolution of the family conflict would become an important and, perhaps, intense matter.

The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all. This professional should be able to apply techniques of personal communication to persuade the mother that the wishes of her deceased son should be honored.

In the majority of such situations, the procurement coordinator begins by facilitating an empathic discussion among all concerned persons with the aim of reaching a consensus on what the decedent really may have wanted. The presence of an organ donor card itself, while sufficient to preclude the need for family consent to organ removal, does not always silence the objections or satisfy the concerns of those who would prefer that organ donation not occur. Thus, the mother who is objecting might be given time to explore the reasons for her opposition to organ donation before being confronted about her son’s wishes. The astute organ procurement coordinator will use techniques of active listening to engage the reluctant—or opposing—person and to allow full expression of his or her thoughts and feelings. It is never enjoyable to talk about recovering organs from a young person who has died unexpectedly. The waves of emotion that must overcome parents are best managed by those trained to listen and respond appropriately in such difficult family circumstances.

Over a period of several hours, the effective procurement coordinator will have established a relationship with the mother and permitted her to work through the early stages of grief and to have her questions regarding organ donation and transplantation answered. It is highly likely that the mother will ultimately come to the understanding that her son’s wishes should be honored, even if she opposes organ donation.

It is, of course, possible that the organ procurement specialist is not as talented as one would wish, or that the mother remains adamantly opposed to organ removal no matter what. In such a case, the organ procurement team is beset with a difficult decision: whether or not to go forward with organ recovery since the signed donor card is suitable consent, and, thus, leave the family in conflict. The family would be left in conflict if organs are not recovered anyway, since the father favors organ donation. In the circumstance of unsuccessful counseling, the organ procurement agency would need to examine the procedures and experiences that have allowed for the best outcome of potential donor families and others. In many such situations, organ recovery is accomplished even when objections persist. While the family dilemma goes on, lives of other critically ill persons will be saved by organs recovered from the dead trauma victim.

Thomas G. Peters, MD, is a professor of surgery and chief of the Transplant Service at the University of Florida Health Sciences Center in Jacksonville. In 1988, Dr. Peters organized and directed the Jacksonville Transplant Center at Methodist Medical Center and served as chairman of the Department of Surgery at Methodist Medical Center for 10 years. He was co-chief of surgery at the University of Florida and Shands Jacksonville from 1989 until 2001.

Commentary 3
by Richard J. Howard, MD, and Danielle Cornell, BSN

The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation. In addition to dealing with an unexpected injury or intracerebral accident, the family must come to terms with the fact that their loved one is dead. They may have a difficult time accepting this since the patient has a heartbeat, a measurable blood pressure, produces urine, and has good skin color and other indications that suggest life. Many individuals (even physicians) do not understand the concept of brain death. And now someone the family has not seen before comes in from something called an organ procurement organization and asks permission to remove the organs of their son or mother or sister for transplantation. The stresses associated with the initial injury, the death, and now the request for organs cannot be underestimated and can be difficult for anyone who has not gone through this process to fully appreciate.

Yet organ donation can salvage a great deal of good from a tragic circumstance. Knowing that their loved one can save and improve the lives of other individuals through organ and tissue donation can be a source of great solace and comfort. The organ donation can become a living memory of and tribute to their relative.

In the example cited here a 20-year-old man, Justin Lewis, died in an automobile accident, and testing showed he was a suitable potential organ and tissue donor. In this particular case, it was discovered that he had signed an organ donor card. The Uniform Anatomical Gift Act (UAGA) of 1968 clearly indicates that a donor card signed in the presence of 2 witnesses is legally binding. The act was adopted by all states within 3 years. Many organ procurement organizations (OPOs), however, do not take advantage of this provision because they are concerned about their relations with the family as well as about potential legal disputes and adverse publicity that could result in a decline in organ donation should they act upon the donor’s consent—even though such worries have not proved to be an issue in most places.

States have responded to this concern, and legislation authorizing the donors intent, called “first-person consent,” has now been enacted in 42 states. These laws acknowledge that a documented donation decision (donor card, drivers’ license, donor registry, etc) that has not been revoked by the donor prior to death, is legally binding and does not require the consent of any other person upon death. Despite this legislation, many OPOs are still reluctant to pursue first-person consent. Fifteen years following the enactment of the UAGA, OPOs in only 4 states reported they were actively practicing first-person consent organ donation recoveries.

In the case of this 20-year-old designated donor, our organ procurement organization, would have modified its approach to the family. The staff would have notified the parents that their son had clearly showed his intent to be a donor by so designating on his driver’s license and that we planned to honor his wishes. Even if both parents disagree with organ donation, the signed organ donor card is sufficient permission for the OPO to recover organs for transplantation. We have had only a few differences of opinion with the donors’ legal next of kin in honoring first-person consent.

The case of Justin Lewis would not be unmanageable for an OPO that is actively pursuing first-person consent cases. The OPO staff must discuss organ donation and what it entails with the family and answer their questions in a supportive, non-confrontational, non-threatening manner. We have found that much of the objection to organ donation is due to lack of accurate information. For instance, some individuals believe that if organ or tissue donation occurs, there can be no viewing of the body afterwards. Some will agree to organ donation once they realize that a viewing can still take place and that no incisions will be made on the head or neck.

Parental or next-of-kin refusal often has less to do with the concept of organ donation than with control or authority for decision making for their injured and now dead relative. Building a relationship with the family by asking questions about what type of person their relative was can assist in establishing communication related to the patient; the importance of this relationship cannot be overstated. Having a sympathetic OPO coordinator or designated requester who is willing to take time with the family, hear their concerns, and answer questions frequently means the difference between obtaining permission and being met with refusal. Asking the parents if they understood what the physician told them about brain death also provides an opportunity for educating and trust-building.

Even if the OPO staff or other designated requestors aren’t negotiating with family members to obtain consent, they should still speak to the next-of-kin in a quiet room that is softly lit and has enough chairs so that no person is left standing. The number of people in the room should be limited to 1 or 2 family members. The more people who are in the room, the more likely someone will object to donation. It is important for the requestor staff to state that the adult decedent willingly made a choice to give the “gift of life” upon his or her death, and that the purpose of the meeting is to answer any questions they may have about the procedure and to ask some questions about the medical history of the donor.

Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families, and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.

When an OPO makes the choice to recover organs from a designated donor against the family’s wishes, an ethical balancing act may ensue. Some would argue that the wishes of the surviving family members should be given primary consideration; that procuring organs from a deceased patient in opposition to the family’s desire will add to their grief, especially in the case of parents. But others will dispute that the surviving family members deserve primary consideration, arguing that the patient’s wishes to be an organ donor upon death must be honored. Is it ethical for the OPO to walk away from a patient and not honor the documented decision he or she made while alive? Is it defensible to decide not to attempt to place and procure organs for transplant because the family doesn’t agree with the decision the adult patient made during life? Finally, is it right to ignore the patient’s request because he can no longer speak for himself?

Would we deny living patients’ the right to decline blood products, to see their religious representative, or to decline cardiopulmonary resuscitation? The answer, simply, is no. People who make the decision to become donors during their lives have a right to have that decision carried out upon their death. It is not ethical for an OPO to refuse to recover organs only because the donor can no longer speak for himself or herself. We believe the wishes of someone who signs a donor card should be respected even if the family disagrees. And yet we realize there may be unique circumstances where pursuing first- person consent might not be in the best interest of the family or of the transplantation community. Every potential donor situation has unique aspects. While some OPOs err on the side of the designated donor, there is no 1 formula that will always guarantee a good outcome.

There are also times when a disagreement about donation cannot be resolved among family members (and where the donor has not indicated his wishes while alive). If a resolution is not attainable despite the best efforts of the OPO coordinator, it may be appropriate for the OPO to withdraw and make no further efforts to get those who object to donation to change their minds. In these situations the family usually comes to a consensus and refuses permission for donation. If, for example, the family stated that the patient, in the presence of his mother, girlfriend, or other family member, verbally revoked his decision to become a donor, the OPO would have to withdraw all attempts of obtaining consent for donation.

Richard J. Howard, MD, PhD, is the Robert H. and Kathleen M. Axline Professor of Surgery and head of the Division of Transplantation at the University of Florida. Dr. Howard is also the past president of the American Association of Transplant Surgeons and is a member of the Board of Directors of UNOS (United Network for Organ Sharing).

Danielle Cornell, BSN, is the executive director of LifeQuest Organ Recovery Services, the organ procurement organization (OPO) that serves northern Florida.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.

© 2005 American Medical Association. All Rights Reserved.\

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Bob Aronson is a 2007 heart transplant recipient and the author of most of the more than 200 Bob’s Newheart blogs.  On occasion we publish guest blogs and welcome submissions.  We cannot guarantee that your submission will be used and it will not be returned.  We reserve the right to edit guest blogs but will always give full credit to the author or source. 

Today’s post is the last one of 2013.  Bob’s Newheart blogs are read in 142 countries and average 5,000 readers per month, mostly from the United States with English speaking countries rounding out the top ten.

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We send our best wishes and hopes that all of our readers, followers and friends have a happy, peaceful and safe holiday season. 

Steering Toward Hope — A Canadian’s Noble and Impassioned Effort To Save Lives

Dedicated to “Uncle Jim” MacMillan

By Bob Aronson

With Johnny Racine

The chorus from the Mariah Carey song Hero is a fitting way to start this blog..

“And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you”

“And then a hero comes along….Johnny Racine would never describe himself that way, he would never even think of it but being as this is my blog I can say it.

The 39 year old former mechanic, musician and computer whiz kid from Ottawa, Ontario, Canada has made a commitment that puts him on a collision course with the hero designation.  His “Steering Towards Hope” tour will span the width of Canada in the summer of 2014 to inform and inspire the nation to become organ donors and support kidney research during the Kidney Foundation of Canada’s 50th anniversary year.

Johnny will be leading the tour with his own 800 horsepower Mustang which he built with the aid of his twin sons 16 year old Tyler and Ryan.   Dubbed “The Kidney Hope Car” the 2007 Mustang is a labor of love hope and commitment to kidney patients everywhere.

As Racine and his crew cross the nation they will hold “Poker Runs” and “Show and Shines” in several cities along the way (schedule to be announced) to draw attention to the need for organ donors.  These are real “Oooh and Ahhh” events that allow owners to show off their great work and attendees have an opportunity to get up close and personal with some of the most amazing and exciting cars on the planet and their ingenious owners.

Show and Shines involve owners bringing their cars into town for display purposes only but there will be awards for those that show best.  Registration is only $10 and It’s a lot of fun for owners to show off their hard work.  Attendees will have fun looking, taking pictures and talking with the owners.

Organization of the Poker Runs and the Show and Shine events is up to individual communities but Racine’s team will be available for advice and other help.

Here’s how a “Poker Run” works.  First you have to know this is not a race.  It is a poker game on some very hot wheels and an opportunity for the most creative custom hot rodders to get together to show off their cars and maybe win a prize while doing it.

Each contestant pays an entry fee of $35 and those fees will go to the Kidney fund.  There will also be prizes for the top three Poker hands.  The prizes and Poker Run expenses are funded by sponsors (more on sponsorship opportunities at the end of this blog).  Drivers are encouraged to bring a navigator for the contest.

Upon registration each driver will be given a number along with a map to direct them towards their first check point. Again this is not a race so there is no set time to complete the game.  The driver and co-pilot can enjoy the drive and the spectacular Canadian scenery.

At the starting line, groups of 6 to 8 cars will leave about ten minutes apart.  Upon arriving at their check points they will each blindly pick a card from a pillowcase full of cards.  An official at the check point then logs the card they chose and puts it back in the pillow case at which point the driver is given a map that will lead them to the next stop. When they have made all the stops and selected all their cards they return to the starting point where judges will look at each poker hand.  Those with the best hands win the prizes.

“What happens in a tie?” You ask.  Well, if that happens contestants can choose between a real game of poker or picking new cards from a new pillow case.

As the Steering Toward Hope tour moves west to east across the country, every unique moment will be shared via Twitter, Facebook and YouTube.

Leading the tour will be Johnny’s own custom vehicle, “The Kidney Hope Car.”

Yes, it’s a Mustang and no, it’s not your father’s Mustang or anyone else’ for that matter because this baby is powered by 800 horses, that’s right 800 horsepower that’s about four times the power of the average car but it didn’t come that way from the Ford Motor Company.  Johnny and his 16 year old twin sons Tyler and Ryan are responsible for taming that many horses and packing them under the hood of this 2007 mustang. And…believe, me, all 800 of them are raring to go.  As you can see by the trophies,  It has already won three best of show awards.

Johnny is well known in automotive and motorcycle circles and he’s using his car and his reputation to save lives by increasing the number of organ donors in Canada (I have a hunch there’s going to be a huge ripple effect that will send waves splashing across the border and inspire U.S. citizens to do the same. I wouldn’t’ be at all surprised to see a U.S. tour).

Racine is doing this because he watched his favorite uncle James MacMillan die a slow and terrible death as the result of kidney disease.  “Uncle Jim” suffered for a long time and even got a transplant several years ago but the illness returned and he was again placed on the Canadian transplant list.  This time, though,   there was no donor organ match.  Canada like most every other country doesn’t have enough organ donors to meet the demand and Johnny sadly watched Jim’s failing health until in February of 2012 MacMillan died.

His uncle’s death left Johnny Racine saddened, devastated and frustrated.  Jim MacMillan a brilliant mechanic himself, was Johnny’s mentor who not only taught the young Racine what he knew but worked side by side with him on a number of car “remodeling” projects.

Johnny saw Jim’s death as a challenge to do something to prevent others from suffering the same fate, so he turned to what he and Uncle Jim knew best – cars – hot cars – souped-up rubber burning, fire breathing, chrome plated, mechanical miracles.

Jim taught Johnny and Johnny taught his sons.  Together they turned his 2007 Mustang into something with nearly enough power to leave earth’s gravitational pull.  It has become the “Kidney Hope Car.”

Now that incredible automobile is going to be on display for everyone to experience and it is guaranteed to excite all of your senses.  Upon first sight this spectacular car and its custom vertical doors  will almost take your breath away — but you will be near sensory overload when Johnny fires up that big custom engine because you will not only hear it you will feel the rumble of 800 restless horses when that big V8 power plant roars to life.  And…finally there’s that special aroma that only a car like this has and it stays with you –forever (if you want to know more about the car see the footnote to this blog).

Working closely with the Kidney Foundation of Canada, Racine is dismayed by the fact that people don’t seem to know just how serious kidney disease is.  With indignation and passion he points out the following:

• 1 in 10 Canadians have kidney disease
• Canada was once a leader in organ donation and that now it has fallen to 23rd
• 4,500 Canadians are waiting for an organ transplant, 80% are waiting for a kidney
• Of the 80% waiting for kidneys 40% will never get one…they will die waiting just like Johnny’s uncle Jim

Johnny asks that everyone consider this question, “Why take your organs to the grave when the gravely ill so desperately need them?”

The Steering Towards Hope team includes Johnny, the twins and Stephanie but also several people who have had kidney transplants like Cody McLelland who got a Kidney from his dad three years ago.

Cody and others will meet and greet people on the tour and tell their stories in an effort to increase organ donation and to raise money for the Kidney Foundation of Canada. They will also visit the dialysis units in those areas to speak with patients, get more stories, do interviews and publish them on their website and YouTube http://www.youtube.com/user/STHCanada?feature=watch   So you’ll get a double hit of excitement.  You’ll not only see great cars and meet their owners you’ll also meet and chat with medical miracles who are alive because of the goodness of others.

Cody, for example, decided that a tattoo would serve as a constant reminder of his father’s love and generosity.

While dates have not yet been set for the tour the plan is nearing completion and has the team starting on the West Coast of Canada and moving eastward to the final destination of Ottawa.  Here’s where the team plans to go.

Steering Towards Hope Proposed Stops

Day 1 Mission BC

Day 2 Victoria & Nanaimo BC

Day 3 Vancouver BC
Day 4 Calgary AB

Day 5 Medicine Hat AB

Day 6 Saskatoon & Moose Jaw, SK
Day 7 Brandon MB Day 8 Winnipeg MB Day 9 Kenora ON
Day 10 Thunder Bay Day 11 Toronto ON Day 12 Val D’Or & Quebec City
Day 13 Labrador City

Day 14 Travel day

Day 15 Charlottetown PEI
Day 16 Halifax & Fredericton

Day 17 Montreal QC

Day 18 Ottawa

The Steering Towards Hope tour can and must happen and you can help.  Once again, if you’d like to be a sponsor click here. http://tinyurl.com/lv2amzs

You know about the car, you know about the tour and you know why Johnny Racine is doing this.  What you don’t know is who Johnny is.  Well, Johnny Racine is kind of a Mr. Everybody.  He’s like the rest of us who work and make payments.  He is a computer expert who works for the Canadian Government and is in the office by 6 every morning.  His family of five includes himself, fiancé Stephanie Bailey his 16 year old twin sons Tyler and Ryan and her son 11 year old Jackson.

Johnny works on the car and the Steering Towards Hope tour after hours and on weekends.  He’s still making monthly payments on the Mustang, has to pay the light and water bills, buy food and meet all the same family obligations as the rest of us plus — and this is a big plus — financing the car over the last two years of the Local Ottawa Steering Towards Hope event and he loves every minute of it.

Johnny Racine is just a regular guy with a big heart and a mission.  His desire to help kidney and other patients is sincere and he has a laser like focus on his planned 2014 tour across Canada to honor his Uncle Jim by increasing the number of organ donors.

Canada offers a multitude of ways in which you can become an organ donor and this site will help you do that http://tinyurl.com/c3awxwn but, no matter what you do…tell your family what your decision is.  All too often families say, “No” to organ donation because they are unaware of the wishes of their loved ones.  Decide to become a donor, register in any of the ways offered on the link provided and then TELL YOUR FAMILY!

You Can Help

Finally, at the very beginning of this post I noted that John Racine would never think of himself as a hero I know that because we’ve talked several times.  He is an unassuming, compassionate man with a mission.  But that mission is expensive and to this point he has paid all the costs out of his own pocket.  He’s not the kind to emphasize the financial burden he has taken on and doesn’t like asking for help.  In preparing this post we communicated by several means a number of times every day.  His enthusiasm for the project is exceeded only by the ideas he generates on how to make it better.  I only found out about the financial strain by pressing him for information.  It’s not something he volunteered or even wanted to discuss but I know he needs some help and I also know he’ll get it.   Here’s the part of the story Johnny rarely discusses.

In each town he visits with the Kidney Hope Car to oversee the Poker Run  and the Show and Shine he helps raise funds for kidney research and organ donation.  Money raised locally stays there.  Johnny neither gets any of it nor does he want it.  He personally pays all the expense of taking the car to events, keeping it running, insured, fueled and safe and now new Federal emissions standards are causing him to make significant mechanical changes that are expensive.  Once the national tour begins the expenses will mount quickly and significantly.  Unless he gets some assistance Racine will have to  pay that expense, too, plus he will be taking all of his vacation time to do it.

Johnny Racine is making an impact but he can’t continue to do it alone.  He’s not looking for donations for himself, he has a job and can pay his own way.  What he needs is sponsors — companies, corporations, individuals or groups who will absorb the cost of tires, necessary upgrades (like the new emission standards) oil changes, tune ups, insurance and other items.  If you are interested in sponsorship here are your options and the benefits associated with being part of Steering Towards Hope.  It is a very worthwhile project and will result in saving a good many lives and some of them may be people you know and love.  Is there a higher calling or a more noble action you could take?

$1,000 level Sponsorship Benefits July 25 2013.docx

$1,000 Tour One Pager draft by Pam Aug 2, 2013.docx

$5,000 level Sponsorship Benefits July 25 2013.docx

$10,000 level Sponsorship Benefits July 25 2013.docx

$25,000 level Sponsorship Benefits July 25 2013.docx

Click here if you’d like to become a sponsor or want more information.  http://tinyurl.com/lv2amzs

 ***The Kidney Hope Car specs for car buffs

It took Racine and his twin sons three years to build this 2007 Mustang GT into a high performance street and show car.  The Mustang features a built twin turbo 4.6 three-valve engine good for nearly 800 hp at the rear tires. They also added an Exedy dual friction clutch, ROUSH Performance body kit, and Menzari 20-inch wheels. They lowered the car with Eibach springs, added Koni adjustable shocks, and a Steeda anti-hop kit as well. They kept the stock 3.55 gears in the differential allowing the car to cruise easily on the highway. It averages 500 km with 65 liters of 94 octane fuel on the 94 octane performance tune, that’s a little over 18 MPG (for those of us not on the metric system),. The father and sons also upgraded the exterior of the car with a ROUSH body kit and a set of vertical opening doors.

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Bob Aronson is a heart transplant recipient.  He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.

For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the  Aronson Communications Group after the surgery.  Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.

Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor;  was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.   

Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007.  OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group. 

Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI.  We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at bob@baronson.org.  We intend to continue to expand the number of issues we cover and the availability of information to the public.  You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.

If you are an organ donor we thank you.  If not you can become one by going to www.donatelife.net it only takes a few minutes.  Then, tell your family what you have done so there is no confusion later.

A Proposal To Legalize the Sale of Human Organs

By Bob Aronson

Plan by David F. Diamond

The story of the organ shortage is all too familiar; supply just can’t catch demand. 

Since 1984 when Tennessee Congressman Al Gore (D) and Utah Senator Orin Hatch (R) authored and passed the National Organ Transplant Act (NOTA) there have not  been enough organs.  The act makes “Altruistic” donation the law of the land simply meaning that patients who need transplants must depend on the good will of others who upon their deaths will voluntarily donate their organs. 

 After nearly 30 years only 40% of Americans have shown that good will by registering as organ donors.  If the goal was to provide organs for all who needed them then the experiment failed.  I cannot believe that either Gore or Hatch would have supported a plan that would allow thousands to die.

Today there are about 120,000 people on the national transplant list and so far in the first 7 months of this year there have been only 11,600 transplants done. Obviously the system isn’t working the way Gore and Hatch had hoped.

So what to do?  There have been scores of proposals put forward to change the law.  Proposals which include “Opt-out” or “Presumed consent” which means everyone would automatically be considered an organ donor unless they chose to “Opt Out” (our current system is “Opt In”).   Also proposed are programs that would offer transplants only to registered organ donors; mandatory donation; compensation of sorts that would pay funeral expenses or perhaps provide scholarships and outright commercial sales of human organs.  All of those options have been discussed by lawmakers, medical ethicists and the people who run the national transplant program and they have all been dismissed as unethical, unmanageable or just plain unworkable and people continue to die.

When NOTA was established the authors made it quite clear that organ sales would not be allowed.  NOTA specifically states “it shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” The penalty of breaking this law is a fine of $50,000 or up to five years in prison, or both,   So that readers have accurate information before them, here is that section of NOTA:

From the National Organ Transplant Act of 1984, as amended through February 1, 2010:
TITLE 42 > CHAPTER 6A > SUBCHAPTER II > Part H > § 274e
Prohibition of organ purchases
(a) Prohibition

It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. The preceding sentence does not apply with respect to human organ paired donation.
(b) Penalties
Any person who violates subsection (a) of this section shall be fined not more than $50,000 or imprisoned not more than five years, or both.
(c) Definitions
For purposes of subsection (a) of this section:
(1) The term “human organ” means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation.
(2) The term “valuable consideration” does not include the reasonable payments associated with the removal, transportation, implantation, processing, preservation, quality control, and storage of a human organ or the expenses of travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ.

For the past nearly 30 years, the prohibition against buying and selling organs in the United States has been the law of the land.   Efforts to provide financial incentives as a means of increasing deceased donation, for example, have failed because of what was determined as clear Congressional intent that organs not be placed in a commercial market.

When you consider the strong language in NOTA with regard to organ sales one would think the debate would be dead.  Well, it’s not and that’s because of what appears to be a contradiction in public policy.  The law says one thing but we seem to practice in some cases what the law disallows.   

We are prohibited from selling human organs but not hair, sperm, blood, and other “replenishable” body parts.   The question of commercialization of human organs remains unsettled; not so much because of a public desire to sell their organs but rather because of the explosive growth of the biotechnology industry.  

Advances in that arena have generated uses and needs for body tissues that were previously unimaginable. And there’s the rub.  While the law bans the buying and selling of organs for transplantation, they have not banned their use in research, education, and commercial endeavors.  So the bottom line is that you can buy body parts legally but not for transplantation.

Enter David Diamond and his proposal for legalizing the sale of human organs.  I met David on the internet.  We share backgrounds in politics and broadcasting and in trying to save lives through organ transplantation.  

By publishing his proposal I am neither endorsing nor opposing it.  I am posting it because I believe in an informed public and that he has the right to be heard and have his ideas discussed.

David has not had a transplant nor is he a candidate for one, he simply has an interest in the issue that began with a radio interview. Here’s David Diamonds story in his words:

“In 1984 I was doing a radio talk show in Memphis TN.  My guest one day was the local director of the Organ Procurement group I asked him “Well, couldn’t people buy an organ if they wanted to?”

He answered that was illegal under the new law.  The authors, he said, wanted to prevent the development of a black market.

I didn’t think to ask the logical follow-up question:  “But won’t that seriously limit the supply.”

Days and weeks and months thereafter, the question nagged at me.    Finally I began to develop a solution that I thought could solve the shortage.  And so I talked it up for 20 plus years, getting nowhere fast!  Folks didn’t want to consider or talk about such a “ghoulish” subject.

In 2008 before the Republican Presidential Primary, I had a brainstorm.  I thought, “One way to get publicity for anything is to run for President of the United States but I’ll do it on just the issue of legalizing organ sales.”

Well,  I did it on a shoestring and sure enough I got some publicity and even got a story in the Des Moines, Iowa paper.  Unfortunately John McCain got the nomination and my plan was no longer of interest to the news media.

I say the idea is still good.  I’ve tried to improve it along the way; tried to address all the obvious objections.  But I’m sure I’ve missed a few.  Now you get to give us your thoughts.  Let’s work together and create a huge supply of organs.

The David Diamond Plan to increase the supply of transplantable organs by making the sale of human organs legal in the United States.

The Federal Organ Transplant law needs to be changed.

The Federal Organ Transplant Law enacted in 1984 provides that only donated organs may be used. The following plan to increase the supply of organs for transplant was developed in subsequent years by David F. Diamond of Memphis, Tennessee.
======0======

The shortage of organs is taking the lives of almost 7,000 people unnecessarily each year. Donation is good. It is the highest altruistic step that a person can contemplate. However, for a number of reasons, many people are not willing to donate. The solution is to provide a regulated system allowing the organs of cadavers to be sold as follows:

A. A contract can provide that when a person has decided, for whatever reasons, not to donate organs, he or she (hereafter: the provider) can commit to a plan to have the organs sold if and when the provider is brain dead. This contract will also be signed by the next of kin, spouse or nearest living relative so that that party understands the purpose of the contract and agrees that they will not oppose its implementation when the provider dies. A provider’s option to cancel the contract at any time prior to the provider’s death will be included in the contract. The use of this contract will allow the provider to leave an estate to his heirs or a designated charity. A provider, with few or no assets, might otherwise have none to leave when he or she passed.

B. The sale of organs can be conducted by a broker, attorney or individual (hereafter: an agent) designated by the provider. A licensing procedure would establish that the agent would be certified as fiscally responsible and having financial integrity. Upon determination of brain death, the agent selected by the provider, using email, fax or phones, would immediately advise interested buyers of an organ’s availability and condition, etc. Time would be of the essence, of course. Appropriate compensation to the agent, such as a commission for services provided, would be set forth in the contract. Buyers whose bids were accepted would send payment by wire transfer, cashier’s check or other means approved in the law.

C. The party designated by the provider must maintain a public record (like a broadcaster’s log which is available for public viewing) specifying the individual who gets the organs, how much is being paid and the identification of the provider. The purpose of this transparency is to eliminate the need for a black market, and to stimulate public awareness. If there is a public record, as soon as organ sales begin, the news media will undoubtedly write about it pointing out how much money was involved in the transactions and stressing how much money goes to the heirs. This will persuade a lot of additional people to agree to such a contract, thus increasing supply exponentially. Through the action of the law of supply and demand, the increased supply will cause prices to decrease to a level most people will consider reasonable. Unless you allow prices to be set by the market process you put a limit on the number of organs that might become available. Any fixed price, set by government or a special agency, would diminish the supply which would defeat the goal of making the most organs available. That would cause some individuals to decide not to participate. But if they knew that the organs they might provide are going to bring whatever the market process allows, they’ll have every incentive to take part.

D. The organs would have to be sold only for transplant to U. S. citizens in order to avoid foreigners from bidding up the price and reducing the supply to Americans. Of course, if other countries should adopt model legislation such as ours then we could reciprocate and become partners with them since their organ supply could be shared with ours.

E. The poor will not be discriminated against. They will have access to organs because the law will provide that, just as in Medicare or Medicaid presently, the government will pay for any medical procedure or supplies that the patient needs, upon a doctor’s certification that it is medically necessary. The government would buy organs on the market for those with Medicare or Medicaid unless donated organs were available. The same principle will apply for those with health insurance. And the wealthy, who may choose to be self insured, would be free to arrange for organs in the same market. Of course, people would still be free to donate organs. And participation by providers in the futures contracts would be entirely voluntary.

F. Presently those uninsured or poor, not covered by Medicare or Medicaid, have to raise tens of thousands of dollars before hospitals or transplant surgeons will help them. The added cost of an organ can also be raised in the same way, or the law can require our government to cover that cost, since it will be less costly over time than dealing with whatever the patient’s medical expenses would be otherwise.

G. The plan will require providers to have their medical records maintained by their doctors beginning at least as soon as a futures contract is signed. It would be made available immediately to any parties potentially buying an organ from that cadaver. The purpose, and the result, would be to assure a better, safer organ supply. This plan does not contemplate any sale of kidneys or parts of livers from a living person. There are risks in having such surgery and for that reason and others, we set that aside and take no position on that question. Sometimes, under current law, it is the right thing to do, depending on the circumstances. But in point of fact, the need for such organs will be adequately supplied with adoption of my plan.

=========0=========

The proposal I’m offering will be, of course, subject to improvement and modification by the federal legislature. Meanwhile, I welcome and will entertain seriously any changes so long as they do no damage to this essential requirement: We have to let the law of supply and demand work in order to maximize the number of organs that will be made available.
–

David Diamond 82, lives in Memphis, Tennessee.  He is  a retired TV and radio commercial spokesman, an actor, a freelance broadcast sports producer, and a marketing and public relations consultant.

Following four years of service (1953-1957) as a Russian language technician in the U.S. Air Force, Diamond studied foreign affairs at George Washington University in the late 1950’s. He also worked for Maryland state senator Newton I. Steers, Jr: as congressional and state senatorial campaign manager.

Other endeavors include:

·         Serving as executive assistant and deputy commissioner in the Maryland Insurance Department;

·         Legislative assistant in the state capitol in Annapolis.

·         Office manager for U.S Senator Charles McC Mathias.

·         News anchor for WTAE radio; radio/TV

·         News director for the 1973 National Boy Scout Jamboree;

·         Managed a successful congressional primary campaign for Robert Casey

·         From 1982 to 1991 he was the national commercial voice for the Levitz Furniture chain.

IF THE COMMENT SECTION IS NOT VISIBLE GO TO THE TOP OF THE PAGE AND CLICK ON THE NUMBER IN THE CIRCLE IN THE RIGHT HAND CORNER AND IT WILL APPEAR OR.…you can email David F. Diamond at david.f.diamond@gmail.com or Bob Aronson at bob@baronson.org 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound.  If you decide to use the show I will  also send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and I will send the show and book ASAP.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a sus pensamientos a mí en bob@baronson.org. Y – por favor difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

Por favor, vea nuestro video musical “Dawn Anita The Gift of Life” en YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, “Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

IF THE COMMENT SECTION IS NOT VISIBLE GO TO THE TOP OF THE PAGE AND CLICK ON THE NUMBER IN THE CIRCLE IN THE RIGHT HAND CORNER AND IT WILL APPEAR OR.…you can email David F. Diamond at david.f.diamond@gmail.com or Bob Aronson at bob@baronson.org 

Kids Should Get Organs and So Should Everyone Else

Transplant experts agree to special consideration for kids

The board overseeing organ transplants in the U.S. voted on Monday to allow special consideration for children needing lung transplants after the families of two dying children filed suit. http://vitals.nbcnews.com/_news/2013/06/10/18888114-transplant-experts-agree-to-special-consideration-for-kids?lite

The real story behind this sensational headline is that we have a severe shortage of transplantable organs that results in the deaths of 20 Americans of all ages every single day of the year.  Somehow, though, the big picture, the view from 50,000 feet gets lost in the clamor to save the lives of helpless, dying children.  We could save their lives and a lot of others if more Americans became organ donors — but let’s get back to the headline story and then discuss the bigger picture.

While today’s story appears to be good news it could also signal that people with the ability and resources to generate publicity favorable to their issue can cause decision making bodies to change policy.

I am and have always been of the opinion that younger patients should always be favored when organs become available but nothing is that simple.  There are a number of factors that go into the decision to transplant an organ and the age of the proposed recipient is but one of them.  Others include the size and condition of the organ, blood type, tissue match and the distance from the donor (some organs cannot survive outside the body long enough to travel great distances.  A heart in San Francisco likely cannot be sent to a patient in New York and maybe not even as close as Omaha).

I understand and sympathize with the public outrage over children who are dying because they can’t get organs to keep them alive.  I understand and sympathize with parents who will go to nearly extreme to save their children’s lives.  I, too, would seek relief from the courts.  These parents are doing what parents ought to do.  What I don’t understand is why the politicians and the media place so much emphasis on a short term fix for a few and ignore the long term solution for the many — which is to increase organ donation.

The problem is that while most of us have good intentions, we just don’t follow through.  Polls continually indicate that over 90% of us think organ donation is a great idea but available data suggest that only about 40% of eligible organ donors actually sign up.

The decision noted in the posted story could represent a double edged sword.  The experts who are members of governing bodies should rely on their expertise, experience and science to make decisions and not be swayed by political or public pressure.  Sometimes politicians and public opinion are wrong and when that’s the case the experts have to stand up to the pressure.

I would readily give up my spot on the transplant list if it meant a child could have an organ instead of me but the choice is rarely that simple.  I have a feeling that this move by “Transplant Experts” is window dressing because reality suggests that if organs don’t match, if they are too large, or if they don’t meet other criteria children will still be left waiting.

I don’t know much about most things but I do know a little about organ transplants being as I got a new heart in 2007. It took me 12 years to get on the national transplant list but only 13 days to get a new heart…I got lucky.

 In order to be listed for a transplant you have to be at an “end stage” in your disease.  That means physicians have to certify that you will die without a transplant.  Everyone on the list is dying and there are about 120,000 Americans who qualify but only about 28,000 transplants are done each year.  You do the math. Thousands die each year because of a lack of transplantable organs.

So, my friends with good intentions of becoming organ donors please know this.  Good intentions won’t save a single life.  If you are one of the 90% who believe that organ donation is a good idea but also belong to the 60% who haven’t signed up, do it now.  Just go to www.donatelife.net and follow the instructions.  It only takes a minute or two.  Then, then tell your family of your intentions.

The question I hear most often is, “If so many believe in donation, why aren’t they donors?”  I think the answer is quite simple and two-fold.  1) People don’t like to think about dying and 2) They don’t think they will die anytime soon so, “What’s the rush?”

The regrettable fact is that death can strike unexpectedly and if you are not an organ donor your organs likely will be buried with you.  Each year thousands and thousands of perfectly healthy transplantable organs are buried because the deceased person just “didn’t get around to becoming a donor.”

I hope that everyone who reads this lives for a very long time…but just in case, why not register now?  One organ donor can save or positively affect the lives of up to 60 people.  An expression often used and very true is, “Don’t take your organs to heaven; heaven knows we need them here.”  Good advice.  Register today www.donatelife.net

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

UNOS CEO: Study Could Redefine “Medically Suitable” Donors

On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

You Could Die Today! Will You Bury Your Organs Or Donate Them?

What if tomorrow or even today was your last day to be alive?  It’s possible.  No one knows when their time will come.  We start dying upon birth and could die young from a variety of medical or accidental causes. That’s why it is so important to become an organ donor now, right now.  Just go to www.donatelife.net and do it. 

There are three reasons you should become an organ donor right now:

1. You could die today or tomorrow and if you are not a donor your organs could be buried with you.  It happens 20,000 times a year in the U.S. 
2. You could find out that you or a loved one needs a transplant
3. You are a compassionate human being who wants to save lives and you understand the urgency.

My blogs are about living, about saving lives and about how the living can help do that but sometimes a writer has to provide some shock value in order to get people’s attention.  So here’s the shock.  You should become an organ donor soon because you could die soon, very soon. Stand by…there’s more shock to come.

You’ve all heard the numbers 114,000 people on the organ transplant waiting list with only 28,000 transplants done each year. Estimates indicate about 20 people die every day while waiting for organs.  Becoming an organ donor is an urgent issue but for most potential donors it is only urgent for the would-be recipient but consider this… you or a loved one could be the next patient in line waiting for an organ transplant. 

While 9 out of 10 Americans support organ donation, only 38% of US driver’s license or ID card holders are registered as organ donors, according to the 2009 Organ Donor Report Card. Overall, only 1 in 3.75 people in the US are registered organ donors. And in 2008, for the first time in at least 20 years, the number of both living and deceased donors declined over the previous year, according to the United Network for Organ Sharing (UNOS) Organ Procurement and Transplantation Network (OPTN).

None of us expect to die any time soon so we approach organ donation with a, “What’s the rush” attitude.  “They can’t take my organs until I die and I’m going to be around for a while so I’ll become a donor when I get around to it.”  But…what if you die before you get around to it?  Here are some startling odds.

All figures below are for U.S. residents.as of 2005, the latest year this data was available.

Your chance of dying of any of the following                                                   Lifetime Odds

Heart Disease                                                                                                        1-in-5

Cancer                                                                                                                    1-in-7

Stroke                                                                                                                     1-in-23

Accidental Injury                                                                                                   1-in-36

Motor Vehicle Accident*                                                                                      1-in-100

Intentional Self-harm (suicide)                                                                            1-in-121

Falling Down                                                                                                         1-in-246

Assault by Firearm                                                                                               1-in-325

Fire or Smoke                                                                                                        1-in-1,116

Natural Forces (heat, cold, storms, quakes, etc.)                                             1-in-3,357

Electrocution*                                                                                                       1-in-5,000

Drowning                                                                                                               1-in-8,942

Air Travel Accident*                                                                                           1-in-20,000

 SOURCES: National Center for Health Statistics, CDC; American Cancer Society; National Safety Council; International Federation of Red Cross and Red Crescent Societies; World Health Organization; USGS; Clark Chapman, SwRI; David Morrison, NASA; Michael Paine, Planetary Society Australian Volunteers

 Heart disease, Cancer, Stroke and Accidents claim the most people every year.  If you really believe in organ donation becoming a donor right now is the only logical thing to do.                                                                                                              

I hope everyone who reads this blog lives for a very, very long time but I also hope you recognize that there is no time to spare in becoming an organ donor.  My donor was only 30 years old when he died.  I’m sure he expected to live a lot longer than that but fate is unpredictable so why not arrange now to save some lives.  If you wait you could not only lose your own life but cause others to die because your organs were buried with You.                                                                                               

It is so easy to become a donor.  You can do it by going to www.donatelife.net , on Facebook or you can get free organ donation Apps for your cell phone, pads and computers too.  One is http://www.appbrain.com/app/donor-register/com.sam.donorregister  I understand that Blackberry and I-phone have similar apps.

Please understand the urgency. Please go to your computer right now and sign up and then be sure to tell your family, your physician and your faith leader if you have one and…when you renew your driver’s license make sure you check the organ donor designation.

Bob Aronson of Bob’s Newheart  is a 2007 heart transplant recipient, the founder of Facebook’s 1800 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs. 

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.  If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills.  Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Using the DMV to Inrease Organ Donation

By PAULINE W. CHEN, M.D.

Reprinted from The New York Times

| May 17, 2012, 12:35 pm

Last summer I went to my local Department of Motor Vehicles to renew my driver’s license. When it was my turn after a half-hour wait, a woman behind the counter summoned me, muttered a greeting and began shuffling through my papers.

After a few minutes she broke the silence and asked, “Do you want to be an organ donor?”

As a surgeon specializing in liver transplants, I’ve spent more time than most people thinking about that question. But on that particular afternoon, after a long wait on hard benches in a spartan room with a dozen others gazing glassy-eyed into space, a question about death and the dispersal of body parts felt as if it had come from out of the blue. Or from the script of a bad existential play.

It took me a minute to collect my thoughts and agree, but the experience reminded me why there are not enough organs available for transplant in the United States and why only half of all Americans consent on their driver’s licenses to organ donation. It’s hard to think about dying anywhere. It’s particularly difficult in the middle of the D.M.V.

Unfortunately, there are significant repercussions to those decisions. More than 100,000 patients are currently on the transplant waiting list, and about 7,000 of them die each year because of the organ shortage. Even more dire is the situation of African-American patients, who have a higher incidence of diseases that can result in kidney failure. These patients make up almost a third of the waiting list but account for only about 15 percent of those who donate after death. Even though organ allocation does not take race or ethnicity into account, the chances of a “good match” are increased within groups with genetic similarities.

An interesting study published last month in Annals of Internal Medicine offers some hope of increasing the number of people who consent to donation on their driver’s license, one of the easiest and most popular ways to register donors. Unlike previous initiatives that have tried appealing language like the “gift of life,” offering educational programs at workplaces or churches, promoting a YouTube video reminiscent of a popular soft drink jingle and, most recently, tapping into the power of Facebook, this approach takes advantage of the obvious – the wait at the D.M.V.

For six months, a group of researchers stood outside branches of the Bureau of Motor Vehicles in northeastern Ohio and stopped anyone arriving to apply for or renew a driver’s license. They then asked half of these people to watch a five-minute iPod video on organ donation before entering the office, and they asked everyone to show their new driver’s licenses when they left the building.

In the video, family members, donors, transplant recipients and people whose friends and relatives died while on the waiting list discuss their experiences. They also answer common questions about the personal impact of donation, religious views and the level of care a patient might receive once it is known that person is a potential donor. Most significant, the video also encourages viewers to begin thinking about donation, so most people who watch the video as they enter the D.M.V. will contemplate the decision while they are waiting to get their licenses.

The video resulted in an increase of more than 10 percent in consent for donation. And the increase was even greater among African-Americans; nearly 25 percent more consented to organ donation after watching the short film.

“Video is very powerful, particularly among minority communities where health care literacy is an issue,” said Dr. J. Daryl Thornton, the lead author and an assistant professor of pulmonary and critical care medicine at the MetroHealth Campus of Case Western Reserve University School of Medicine in Cleveland. “If you give people time to think and contemplate right before you ask them, you can have an impact on their decisions.”

Those who watched the video felt better informed, had fewer conflicts about the idea of donating and were less likely to want to be buried with all their organs. But there were limitations. Regardless of whether they watched the video, some people continued to believe, for example, that carrying a donor card would mean they would receive less emergency medical care in case of an auto accident.

“There are probably some deep-seated beliefs about organ donation and the health care system that a five-minute video is unlikely to change,” Dr. Thornton said.

It is still unclear whether the increased number of consents that resulted from the video will mean more available organs in the future, but Dr. Thornton and his colleagues are heartened by their findings and are continuing their research. The video is already playing as a public service announcement in some D.M.V.’s throughout the Washington State, and there are plans to try to link it to state motor vehicle Web sites for those who are renewing a license online.

“Even though the majority of people support organ donation, it’s hard for them to envision becoming the donor themselves,” Dr. Thornton said. “We’re trying to create a bridge that makes it easier for those people to cross over.”

Bob Aronson of bobsnewheart is a 2007 heart transplant recipient, the founder of Facebook’s 1800 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs. 

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.  If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills.  Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

To Remember Me — A Donor’s Request

To Remember Me

By Robert Noel Test (1926-1994)

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying.

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

• Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

• Give my heart to a person whose own heart has caused nothing but endless days of pain.

• Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

• Give my kidneys to the one who depends on a machine to exist from week to week.

• Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

• Explore every corner of my brain.

• Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

• Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

• If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man….

• If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

Bob Aronson is a 2007 heart transplant recipient, the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of most of these donation/transplantation blogs on Bob’s Newheart.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

Ethicist Needs Ethics Transplant

In an op-ed piece on MSNBC Arthur Caplan a University of Pennsylvania bioethicist suggested that Vice President Dick Cheney received a heart transplant because he was rich and influential.  Caplan implied, too, that Cheney at 71 was too old for a transplant and that the heart should have gone to a younger person.  I responded with this comment.

Up until today I had some respect for Dr. Caplan but upon reading his uninformed and arrogant musings on Vice President Cheney’s heart transplant and senior citizens, I not only lost all respect I find him pathetic and in need of an ethics transplant. 

I am a long time Democrat, a very vocal opponent of Mr. Cheney and everything he stands for and a transplant recipient who got a heart at age 68 and I’m neither rich nor influential yet I believe the former Vice President got his heart in the same fair and balanced manner in which I got mine.  In that sentence I just negated all of Caplan’s arguments.

Had Arthur Caplan taken a little bit of time to understand the donation/transplantation process he might have a different story.

As much as I dislike Dick Cheney he got his heart fairly and am convinced that his wealth and influence had nothing to do with it. The only discriminatory factor that prevailed is that you must be able to pay for a transplant whether privately or through insurance. Yes, that leaves a lot of people out of the mix but that’s another argument.  He was insured just as I was. Had we matched bank accounts I would have come out on the short end but it was insurance that paid not private wealth.

The United Network for Organ (UNOS) Sharing in Richmond, Virginia (a site I’ve visited many times, has Caplan?) is a U.S. government subcontractor that coordinates all organ transplants in the United States.  It has done so since its establishment under the National Organ Transplant Act (NOTA) in 1984.  Its computer system tracks and continually updates the national transplant list which includes nearly 114,000 Americans.  It is a very sophisticated process and it is blind.  The information in the system does not contain anyone’s name or rank or social standing or wealth it has medical information and the location for each patient.

Having been on the national waiting list I think I’m familiar with the process of how you get there and it is not easy.  First you must see a specialist in your disease at a transplant center where you are subjected to battery of tests to determine two things 1) are you a legitimate candidate for a transplant and 2) is it likely you’ll survive after the surgery.  If the physician determines you meet those criteria he or she presents your case to a hospital’s transplant committee and, if they agree, the patient’s information is sent to UNOS for listing.  Please note, you cannot get on the list unless a specialist physician certifies that you are dying, that a transplant is a last resort to save your life and that you will survive the surgery.

In the United States there are 58 Organ Procurement Organizations (OPOs) they are the federally mandated groups that work with transplant centers  and UNOS to identify potential donors and then with families and hospitals to coordinate the recovery of the organ and its transportation to the site of the recipient.  They have no knowledge at any time of who the recipient is.

Once it is clear that there will a donor organ the process begins to match blood type, tissue, size and other factors.  The match must be as close as possible to in order to limit rejection of the organ by the host body (once transplanted rejection is further limited by powerful drugs). While the intent is to get the organ to the sickest patient, it doesn’t always work out that way because sometime the sickest patient is not a good match for the available organ.

Here’s an example.  I had my transplant done at the Mayo Clinic in Jacksonville, Florida.  My heart came from South Carolina.  I don’t know all the details but here’s what likely happened.  First the heart was offered within the immediate area served by the OPO but there were apparently no good matches.  Then it was made available to outlying areas and they found me in an area that was in the jurisdiction of a different OPO altogether.  I was not the sickest (wasn’t even hospitalized) and certainly at age 68 was not the youngest, and I know I was not the richest but I was a match and I got the heart.  It is just as likely that the same thing could have happened for Mr. Cheney. 

It is also likely that had Cheney not gotten the heart, no one would because it wasn’t a match.  I doubt that someone else was deprived of an organ because Mr. Cheney got it.  Also, there is the question of distance.  An organ will only survive for a limited amount of time once removed from a body.  It must be transplanted as soon as possible.  Mr. Cheney was likely the best candidate within the range of the survivability of the organ. 

 And finally.  It may not be important to Dr. Caplan that those of us over 65 have a chance at getting a transplant and living several more years but it is to us.  How dare he imply that we seniors aren’t worth the time, money and effort to save.  His arrogance and lack of compassion reflects poorly on his ethical character.  How can the ethicist say that a certain segment of the population is “disposable.”  Is that ethical behavior?   Better unlock that ivory tower door Dr. Caplan.  Let some fresh air in.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

 Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission.  Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions.  This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

 Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Journalistic Terrorism

I am a heart transplant recipient and a registered organ donor.  Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die.  I know what it’s like to be on that list.  I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting.  In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist.  I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done.  It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die.  The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation.  Not only is that charge wrong, it is reckless and life threatening.  The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization.  And – not all hospitals even have transplant capabilities.  There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers.  Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs.  That picture is not only distorted it is the product of the overactive imagination found in most fiction writers.  The problem is Terisi passes himself off as a knowledgeable reporter of actual events.  Let me be very blunt.  He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant.  Fact:  the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it.  My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail.   This story is a dramatic example of what I call “Junk” science.  He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors.  Others, who are donors, may decide to reverse their decision.  In either case people will die as a result because the critical shortage of organs for transplant will become even more critical.  Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life.  This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet.  Myths about organ donation (this link directly addresses the subject of care of dying patients)  http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S.  http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line.  We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people.  That’s a fact!  Tell the story and tell it often.  I’m here to write this piece because of an unselfish organ donor.  I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

 Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

 Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

“RockScar Love is where “Scars R Sexy”

Amy Tippins spends every waking moment thinking about or doing something about organ donation, helping other people and spreading joy.   She is the creative genius behind “Rock Scar Love” which celebrates the scars we accumulate through life.  She views these scars as badges of honor and encourages everyone she meets to view them the same way.  Today’s blog is written by Amy with my encouragement and support.  Please heed her words and help out.  Bob Aronson

My senior year of high school was supposed to be spent figuring out which college was going to offer me the best swimming scholarship.  My emotions were supposed to be spent on fighting my mother and trying to earn my independence.

Instead of negotiating how to pay for the next four years of college  I was negotiating with God on if I was going to live through them.  For five years, I had been in liver failure due to approximately two dozen tumors that had been slowly killing me.  I was not fighting with my mother (okay, maybe a little), but my own body.  As a teenager, I was fully aware of my own mortality.

As I reflect on the holiday season that has just passed I am reminded, as I am every year, that I was told I needed a life-saving liver transplant during the week of Christmas 1992.  For the following two months I wondered if I would get my second chance and what it would look like?  1992 was before you could Google “liver transplant” on the web and most likely, it was before Al Gore invented the internet.  When I was evaluated for my liver transplant it was during a time that the long term success of organ donation was still unknown, but the need of for organs was not so desperate.  As my transplant doctor said, “We had more livers than recipients”.  What I did not know was how much my life was going to change in so many amazing ways because of organ donation and how through it I would find my purpose.

Two years ago, I decided to “pay it forward” for what I was given.  Therefore, I started RockScar Love Designs (www.rockscarlove.com) a company that celebrates scars.  We celebrate beautiful scars and the lessons they teach us.  Through my scar, I have come to understand who I am and why I am worthy of celebration and love.  Through my scar, I have come to love who I am and realize that transplantation was my path to opening up my heart to a love beyond my imagination…love for myself!

Starting soon, in late March, RockScar Love Designs and Live Wright Society, a non profit promoting people and causes paying it forward (www.livewrightsociety.org), will be sponsoring the “Scars R Sexy” campaign.  We will be sharing over 20,000 scar stories across the US.  This is not about a physical scar or one particular type of scar, but about all scars and the people who bear them from all walks of life as they embrace their journey and realize that their story is one to be proud of; that scars are something to be embraced as beautiful and that we should all rise up to say “I love my scar because it means I have won — because I have championed what has tried to defeat me!  I am amazing and beautiful for all that I have been through”.

In order to make this campaign successful, RSL and LWS need each and every person that reads this to share our campaign and what it means to you by going to our Facebook page and becoming a fan as well as sharing the page: http://tinyurl.com/7pz5t8w Scars R Sexy)   If you believe in anyone who has a scar of a physical, emotional or psychological sort, we ask you to be a part of this campaign by sharing it with everyone you know.  Without your support, our scars will remain hidden!

You can find RockScar Love Products at www.rockscarlove.com.  We offer t-shirts, baseball caps and multiple other items with a scar theme.  15-20% of all sales go back to charity with a focus on transplant and pediatric based charities!  I also dedicate large portions of my time to mentoring transplant patients, speaking at charity events, serving on board of NKF GA/AL and raising money for Camp Independence.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

Also…there is more information on this blog site about other donation/transplantation issues.  When you leave this site go to our Facebook group, Organ Transplant Initiative and join. The more members we get the greater our clout with decision makers.

Too Few Organ Donors — Inadvertent Terrorism

Each day 19 people die because there are not enough transplantable human organs to fill the need.  The United Network for Organ Sharing (UNOS) which coordinates all transplants in America maintains a list of people who need life-saving transplants.  As of today, January 2, 2012 the numbers are:

Waiting list candidates                                 112,702

Transplants January – Sept. 2011              21,354

Donors January – Sept. 2011                       10,558

Right now, as you read this a patient, maybe a child, is near death.  She needs a heart but there won’t be one. As the electronic monitors beep and chirp, the family is devastated, inconsolable in the frustration over the lack of organ donors and the imminent death of their loved one.  The best medical care in the world is at their fingertips but they are helpless without an organ donor.  The patients vital signs are dropping more rapidly now, the Doctors aren’t holding out much hope.

Right now as you read this, another patient not too far away has already been declared brain dead as the result of an auto accident.  He is surrounded by a grieving family.  It is not known if the patient is or wanted to be an organ donor.  The family is considering a request to donate his organs but the decision must be made soon and they don’t know what to do, their loved one never told them of his wishes.  Through tears and indescribable grief they discuss, they argue and then decline.  Both patients die.

Each year Americans bury or cremate more than 20,000 transplantable organs – 20.000.  Surveys continually indicate that over 90 percent of Americans approve of organ donation but in one of the greatest mysteries ever, only 46 percent actually make the commitment to do so.  This inaction, this procrastination is causing people to die, families to grieve and patients who are awaiting transplants to live their lives in absolute terror.  People who are not organ donors are not evil, they are not bad, they just don’t understand that their lack of action causes terror among patients as great as that caused by the real terrorists of the world.

Most people who aren’t donors, “Just haven’t gotten around to it.”  After all, there’s no rush for them.  Organs are recovered after a person dies and most potential donors are in pretty good health.  The problem is that the patients who need the organs are not in good health.  Everyone who is on that UNOS list mentioned earlier, is dying.  Without a transplant they will die.  Period. End of story.

Well, let’s make the donation process really simple, so simple you can do it from home, your office, on your I-pad or Kindle in your doctor’s waiting room anywhere.  You don’t even have to get up.  Just go to www.donatelife.net and follow the instructions then tell your family what you have done.  It only takes minutes.  Then make very sure they clearly understand that you want to be an organ donor.  “That means when I die I want the medical people to take as much of my tissue and as many of my organs as they need to help save or enhance the lives of others.”  Those are my distinct wishes please respect them should the time come.

That’s the first step to saving lives by helping to increase the number of donors.  The second step, just in case you like this cause and want to do more, is to spread the word to convince others to do the same.  “So,” you say, “How do I do that, how do I spread the word?”  Here are ten easy tips, I’m sure that if you think real hard you might be able to come up with ten more.

1. 150 words is about a minute’s speaking time.  Write out about 150 words on why organ donation is important to the donor…the donor and then post it everywhere you can think of on the internet.
2. Call your local Organ Procurement Organization (OPO) and volunteer to speak on behalf of donation.
3. Buy the green “Donate life” wristband at www.donatelife.net and wear it every day.  If someone admires it give it to them and ask them to wear it.  What’s a few bucks to save  some lives?
4. Ask your pastor to give a sermon on organ donation…offer to help gather the information for him/her.
5. Write a letter to the editor…actually send it to every editor you can think of.
6. When some radio talk show host least expects it…call about the importance of organ donation
7. Offer to speak to a local service club about donation/transplantation issues (Kiwanis, Rotary, Lions etc).
8. Add a short note about organ donation to the signature of every email you send “Did you know that one organ/tissue donor can save or positively affect up to 60 lives?”
9. Talk to a public school class about donation/transplantation
10. Start a blog…it’s really easy.  Just Google “free blog sites” and go for it.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and love.  Please view our video “Thank You From the Bottom of my Donor’s heart.” Just go to www.organti.org and click on the title.  This video was produced to py romote organ donation so it is free and no permission is needed for it’s use.  You’ll also find other useful information on this web site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative (OTI) The more members we get the greater our clout with decision makers and the more clout we have the more likely it  is that we’ll be able to increase not only organ donation but the many alternatives that science and technology people are working on.

Donation to Transplantation — How it Works

It is only fitting that on the eve of the fourth anniversary of my heart transplant that blog 100 on this site addresses  the donation/transplantation process.   My undying thanks to my donor, his family and my caregiver wife for giving me these extra years.  Bob Aronson

Joel Newman is the Assistant Director of Communications for the United Network for Organ Sharing (UNOS).  UNOS coordinates all organ transplants in the United states and is located in Richmond, Virginia.  In response to my request for a guest blog on how the donation/transplantation system works, Joel wrote the following.  Our sincere thanks to him and all the dedicated people at UNOS for their life saving work and for allowing us to use them as a resource.

How It Works

By Joel Newman, UNOS

Since the first successful organ transplant in 1954, more than 500,000 transplants have been performed in the United States.  About 250,000 transplant recipients are alive today, and most enjoy a greatly enhanced quality of life as a result of this life-giving therapy.

Under federal contract, UNOS (United Network for Organ Sharing) maintains an extensive national transplant network to assist medical professionals in the recovery and allocation of donated organs.  This network is called the Organ Procurement and Transplantation Network (OPTN).

This is a brief overview of the processes involved in listing transplant candidates, organ donation and organ allocation.  We at UNOS are glad to address more specific questions.

 

Transplant Evaluation and Listing

To be considered for a transplant, a person approaching end-stage organ failure must be evaluated at one of roughly 250 transplant hospitals nationwide.  A transplant program’s medical team will address issues such as:

• Will a transplant effectively treat his or her disease?
• Does this person have other medical conditions that would complicate his or her care?
• Can this person participate in his or her own care by taking medications on time, following medical advice, keeping appointments, etc.?  Does he or she have family or caregiver support to assist if needed?
• Does this person qualify for insurance for transplant costs?  If not, can he or she raise funds to defray expenses?

The transplant team makes individual decisions according to its medical judgment.  If the program agrees to accept the person as a transplant candidate, it will submit a set of basic data to the OPTN.  The OPTN maintains a highly secure, continuously operated computer database to compare medical and logistical information about transplant candidates at hospitals with that of available organs from deceased donors.

An issue sometimes raised is whether a person’s past history of substance abuse, non-compliance with medical care or other self-destructive behavior may count against the possibility of listing.  While this remains a medical judgment of the transplant team, their emphasis is not on past behavior but current and likely future status.  If the team is reasonably assured that the person has ended harmful behavior and is not likely to resume that behavior once transplanted, they would be more likely to list the person as a transplant candidate.  UNOS is not involved in any program’s decision to list a transplant candidate or remove a candidate once listed.

Organ Donation and Recovery

Organ transplantation depends entirely upon the generosity of one human being to help others through the gift of organ donation.  While this gift may involve a living donor, we will focus here on donation from those who have recently died in a hospital and who meet criteria for donation.

An organ procurement organization (often called an OPO) is responsible for several key functions in the donation process, including:

• identifying potential donors
• documenting donation consent

• collecting key medical history and lab test results to assess organ function and risk of any diseases that might be transmitted to recipients
• entering donor information and organs available for matching into the OPTN database
• assuming a transplant center accepts the organ offer, arranging for logistics of organ recovery, preservation and transportation

Most deceased organ donors in the U.S. encounter brain death (a complete and irreversible loss of brain function, determined by physicians not involved in the donation process).  For such potential donors, respiration and circulation can be maintained artificially for some time (commonly 24 to 48 hours) after brain death has been pronounced.

In other instances, donation may be possible for some people who die in a hospital setting from cardiorespiratory failure.  The person’s treating medical team (in no way involved with organ donation) must conclude that he or she cannot survive but will die of cardiac failure instead of brain death.  The next of kin must agree that death is imminent and that they will agree to end supportive care.  Only then, if the individual meets other criteria for donation, would donation be considered.

Surgeons with specific training and experience remove the organs to be transplanted.  Each organ is packaged in sterile conditions and carefully labeled with a unique identification number to be matched with the recipient when it arrives at the transplant hospital.  The organ cannot be frozen, as this would cause permanent damage to the blood vessels supplying it.  It is preserved in a series of sterile containers that are then surrounded by a solution of wet ice.

Transportation arrangements for deceased donor organs will differ according to the type of organ, the circumstances of the donation, and the distance between donor and recipient hospital.  If they are to be used within a local area, ground transportation (ambulance or chartered vehicle) may be used.  Hearts, lungs and livers, commonly used within a few hundred miles of the donor location, often travel by charter air flight along with a team from the receiving transplant center.  Kidneys have the longest preservation time (commonly up to 36 hours from recovery).  If they are being transported over long distances, they may travel on commercial flights and be delivered to and from the airport by a courier service.

Organ Allocation

Federal law and regulation charge the OPTN to maintain an allocation system that promotes equity and efficiency, minimizes wastage of transplantable organs, and allows individual medical judgment in evaluating and accepting organ offers.

Candidates do not have a designated “ranking” on a waiting list until the OPO enters data for a given organ offer.  The characteristics of each offer may be different in terms of donor size, blood type and location, thus the rank-order of potential recipients will be unique to each offer.

The OPTN computer system generates a “match run” list.  This displays which potential recipient is to be offered each organ in sequence.  Using the match run results, a specialist at either the OPO or UNOS notifies the medical teams for the highest-ranked candidates and provides additional detail to help the team evaluate the organ offer.  This initial notification is usually sent electronically via computer or text message, but the transplant program may request additional information by phone.

Once the transplant team for the highest-ranked patient is notified, they have one hour to review detailed information about the donor and the organ and either accept or refuse the offer.  If the organ is accepted, arrangements are made for recovery and transportation.  If the transplant program declines the offer, it will note a refusal reason back to UNOS.  The offer process will continue either until the organ is accepted or until no one can accept it in time to arrange a successful transplant.

The OPTN matching system is programmed to reflect many factors.  These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system.  Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles.  One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need.  The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward.  The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

• how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
• (for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
• the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
• if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation.  We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

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You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and lovePlease view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

A Life Needs Saving Right Now. Will You Help?

Most often I write about transplants that almost everyone has heard of like heart, lung, kidney, liver and pancreas.  Today is different though. This is about how a new discovery that removes then replaces  some of a patient’s adult stem cells back to the patient and stop, even reverse the effects of Multiple Sclerosis (MS).  Studies indicate this is an amazing breakthrough.  The same procedure is being studied for use with other diseases as well.

This blog is about Emily Lori Cameron a cancer survivor who now has Multiple Sclerosis (MS) which presents her with new challenges every day.  Each day she asks herself, “Will I be able to speak clearly, will my thoughts be clear, will I be able to walk, use my hands or even know where I am and what I am doing?”   Medicare has approved a new procedure for Lori but she must raise $42,000 to pay her share of the cost.  More about that in a bit but first a little about MS.

Multiple Sclerosis is a terrible disease.  In effect the immune system attacks the protective lining around nerves, shreds it and causes communication between brain, nerves and body to become tangled and ineffective.   For example, the brain might send a message to the legs to begin walking but along the way the message gets garbled and what the legs receive is a command to relax so you fall down.  Up until the last couple of years  standard treatment which includes drugs and some physical therapy only delays the inevitable. It does not stop the progression of the disease so it certainly can’t reverse it.

Now there is a new procedure that uses one’s own adult stem cells to not only stop the disease in its tracks but to even reverse many of the existing symptoms.   This new procedure is approved by Medicare and initial studies have indicated that it is very effective, some have even called it a cure for Multiple Sclerosis.   I can’t tell you exactly how this works but apparently they will withdraw from Lori a certain amount of her adult stem cells and store them for a short while. Then she will undergo chemotherapy that will destroy the old immune system. When that is done the original adult stem cells withdrawn from Lori’s body will be injected into her again to create a new uncontaminated immune system. Initial studies indicate success rates in the high 90 percent range. Here’s a link to tell you more http://www.northwestern.edu/newscenter/stories/2009/01/burtms.html

So far the new treatment is approved for use in the early stages of MS so it is entirely possible that if Lori’s condition gets considerably worse, which is entirely possible, she could be removed from the approved list.  Lori’s sister has already experienced the treatment and is doing wonderfully well.  There is an urgency to Lori’s condition because we must, must, must raise the money as soon as possible so there is no chance she will be removed from the transplant list.

Just today I posted a new video on YouTube, it’s only 9 minutes long and effectively tells Lori’s story and why your donation is so critical and must be done so quickly.  You can find it at http://www.youtube.com/watch?v=KrBJoCdIKto.  Or to be even faster you can just go directly to the highly respected National Transplant Assistance Fund (NTAF) and donate directly.  Lori has been approved by NTAF and is registered there www.ntafund.org/contribute/ Secure credit card: 800-642-8399.   You can look her up under the name Emily Lori.

This is probably the most urgent appeal I have ever made.  Lori is a nurse and a very compassionate human being.  She has sacrificed a great deal in order to help others, never asking for anything for herself but now the situation is becoming desperate.  We simply must raise $42,000.  That’s a lot of money but when that’s all it takes to save a human life it should not be an insurmountable obstacle.  Please dig deep…forsake the Latte for a few days, or a beer, or a pack of cigarettes or that sweater you really wnted and send the money to Lori instead.  If we can do that Lori will have the financial support she needs very quickly.  Can you stand by and watch someone die?  I think not…send what you can 50 cents, a dollar, ten dollars…all of it will add up and we can save this precious human life.

Please view another of our recent videos, “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use. 

Also…there  is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook grou[, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

Please  comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and love.

Save Arizona Lives, Make This Video Viral

The campaign to save the lives of the Arizona citizens who were promised and then denied Medicaid coverage for their terminal illnesses is picking up steam.  Organizations from all over the United States and the world are joining the effort to get the Arizona legislature and Governor Jan Brewer to reverse their inhuman decision. 

Two of our Allies, Transplant Recipients International (TRIO) and The FAIR Foundation have thrown their significant weight behind this effort and they are having a huge impact.  

Visible cracks in the Brewer administration foundation are appearing daily.  Arizona legislative leaders are now saying they want to review the decision, even Governor Brewer has indicated she might, might be willing to discuss the issue but that will only happen if they really feel the pressure.

To this point Governor Brewer has defended her decision by using inaccurate and, in some cases, totally false data but it is being challenged daily by prominent physicians, medical associations and even, the United Network for Organ Sharing (UNOS) which usually steers clear of controversial subjects (UNOS coordinates all organ transplants in the United States). 

All of the Television networks, have been reporting on the issue as have newspapers and radio stations.  Our Video, “A Promise Broken” which was released yesterday January 6, 2011 has been watched by thousands from all over the world but we are just getting started.  We need to continue to build the pressure the Arizona politicians are beginning to feel. 

“A Promise Broken” is a powerful six minute PowerPoint slide show that exposes the misinformation campaign that has resulted in the deaths of two Arizonans already.  You can view this compelling presentation at www.savethearizona98.com  or on You Tube at http://www.youtube.com/watch?v=yq5cGoRMne4  Permission is granted for appropriate use of this production to advance the cause of reversing the Arizona decision to deny transplants. 

On You Tube http://www.youtube.com/watch?v=yq5cGoRMne4 you can find it under “Save the Arizona 98” but because we have little in the way of financial resources we had to upload an evaluation copy created by some free internet software so please be patient as you watch it if it slows down a bit. 

As noted we have no funding to promote this video and we won’t make any from its release because it viewing is free, that’s why we need your help to make it viral.  Please view it and if you like it pass on the URL to others. Post it wherever you can because every time you do we get one step closer to saving lives. 

Because of the Arizona decision to deny organ transplants to Medicaid patients two people have already died.  The longer it takes to change the law, the more deaths we will see.  That’s just not acceptable, so join the cause, and make “A Promise Broken” viral.  Do it now, the lives you save could be someone near and dear to you.  If Arizona gets away with this, it will begin to happen in other states.  The video should become viral…not the program that causes the deaths.

Please help, now.  Your fellow Americans are counting on you. www.savethearizona98.com.  http://www.youtube.com/watch?v=yq5cGoRMne4

If you go to www.savethearizona98.com you’ll find some links on the left side of the page that not only take you to the video but also offer you an opportunity to buy T-shirts and other products (all the profits go to the National Transplant Assistance Fund (NTAF) or there’s a link where you can contribute directly to NTAF and purchase nothing. 

When you click “Play” on “A Promise Broken” let it roll.  The slides will change automatically.  When you’ve finished viewing it you are invited to tell others about it. No permission is needed for it to be used in a manner appropriate to the cause.  Also, we’d appreciate if you returned to Bob’s NewHeart and commented about what you’ve seen.

Please visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

Finally, The Ability to Compare Dialysis Centers

ATTENTION DIABETICS! If you need or will need dialysis you must visit this site. Through the Freedom of Information Act (FOIA) a journalistic group has lifted the veil of secrecy surrounding dialysis mortality, transplant listings and more and allows you to compare facilities in every state.

Normally my blogs go into some detail on an issue but this time the posting will be short because the link I provide will give you all the information you need and you can personalize it for your individual needs.  Pro Publica Journalism in the Public Interest, got this information through diligence and patience. 

 This is one of the most important stories to come out in a long time and so far it has been virtually ignored by the mainstream media. 

Please visit this link and comment.  http://projects.propublica….org/dialysis/ 

And…don’t forget the Arizona 98 campaign.  there is more information on this blogsite and you can offer futher support by visiting www.savethearizona98.com.  You can also visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

Organ Transplants Work, Donations Are Up, Hope is Real!

In Arizona there are 98 patients who have been approved for organ transplants but because of cuts in state run Medicaid there is no money available to pay for the procedures.  There has been a lot of misinformation about the effectiveness of transplants and some have even suggested that there isn’t much hope for most of these patients anyway.

I contacted my friends at the United Network for Organ Sharing (UNOS), the national organization that coordinates all transplants in America, and asked them to write a guest blog on the facts about donation and transplantation.  Jim Gleason, a heart transplant recipient, activist, UNOS committee member and National President of Transplant Recipients International Organization (TRIO) responded with compassion, facts and hope

Jim Gleason, UNOS

Sixteen years ago, with heart meds running at their fullest and the heart still failing, I waited for any news of an available heart to replace my failing one. I felt no fear of death as each day seemed to draw nearer to that possibility, never giving up hope and continuing to pray each night “…Thy will be done.”  Imagine my emotions when 6am the next morning, Heather, my transplant coordinator nurse, called with those awaited words, “Mr. Gleason, I think we have a heart for you!”  Even today when I share that part of the amazing story, those emotions well up bringing tears to my eyes, causing me to pause before continuing for so many audiences over these many years.  Yes, that did become my “new heart” and I’ve been enjoying a fulfilled and productive life ever since, thanks to that generous donor family decision.

Viewing developments from my 16 years post heart transplant life history, I see major improvements in every direction.  Technology is keeping us alive longer, making the wait for a transplant more successful and raising the quality of life post-transplant dramatically.  I offer this vision of hope to you from years of personal observation and life experience.  Allow me to share some examples.

Reports of improvements in donated organ preservation will dramatically affect where those organs can travel to the neediest patients.  Through preservation pumps, a donated organ’s condition is being improved, before they are implanted, resulting in both healthier transplants and allowing previously discarded organs to be made viable for transplant.  I see healthier recipients coming back to fulfilled and productive lives than ever before, especially in today’s lung recipients, as one example, where in days past, this was almost a rarity and too often a short-lived success.   Heart patients are waiting for their transplants at home, often supported by miniature-implanted pumps that can keep them alive, sometimes without even a human heart, for months and beyond the one-year milestone that seemed impossible just years ago, now almost commonplace. 

Recently our support group heard a presentation about “growing transplantable human bladders” from the patient’s own cells.  When we asked how soon this might be a viable option, imagine our surprise in hearing that over a dozen had already been grown and implanted in children as part of the yearlong trial to get government approval, and that such bladders were grown in just 6 to 8 weeks!   Now even the invasive biopsy used to test for possible heart rejection after transplant has been supplemented by a simple blood draw.  Through complex DNA testing that test yields a “risk of rejection” metric that can be used to reduce the previously large number of very expensive biopsies ($60k each I heard recently) with these $3k blood tests.  Now that’s progress and hope for us all.

OPO’s (i.e, the organ procurement organizations that work with UNOS to insure organs get to the right patients) and transplant center staffs are teaming up to share best practices, increasing donation rates,  patient survival and improving the overall patient experience, before, during and after the transplant.  The lifesaving but very expensive immuno-suppressant meds that years ago were given in heavy dosages with long-term possible toxic side effects on the kidney and liver, for example, are today proving effective in lesser amounts.  As one very successful and long-term transplant surgeon explained candidly to our support group, “We are discovering that the body itself can deal with those rejection challenges supported by far lesser amounts of those meds.”  Or as another patient, twenty-four years out from an 1986 heart transplant, heard from his transplant doctor, “We really didn’t have enough experience back when you were transplanted – often making “seat of the pants” decisions based on what seemed to be working so far.  Today we have so much more to work with in proven practices that are shared world-wide to the benefit of patients everywhere.” 

When my own kidney ten years post-transplant showed early signs of weakening due to those meds, we had two new alternative drugs that I could be switched to that resulted in improving that kidney function before a transplant was needed.  Today, as I find myself on Medicaid supported insurance, even the high cost of those brand name drugs, a major financial challenge for many post-transplant, are replaced with equally effective low cost co-pay generics.  As we live longer and healthier post-transplant lives, we enjoy the increasing benefits of such developments, both in quality of care and in cost of that care, as evidenced by these modern drug improvements.  At a recent heart transplant dinner celebration of life, our local organization of 800 heart recipients, honored eight who were over 20 years out with their “new” hearts – and I stress that was just our “local” area support group!  We were all given hope and inspiration by their example, and again, that was from the early era of very challenging heart transplants.  How much more we can expect today with today’s protocols, much improved over the past half century in hearts, as just one example.

My personal post heart transplant experience has included seven years of working on three different UNOS committees.  Know that there are over 20 UNOS committees supported by more than 700 volunteers of all backgrounds – yes, even candidate and recipient patients like you and me – working to make the process constantly better, keeping up with the ever improving developments in medical and computer/communications technology.  All serve without pay, dedicating their time and talent to help you get that transplant in the shortest and healthiest manner possible.  In seeing such dedication and hard work, I come away knowing that our process is in good hands and will continue to improve each and every year in a transparent environment that is open to anyone who cares to take the time to see it through the UNOS web site or even personally visits them in Richmond, Va.  “Been there, done that!” and I can tell you it’s worth the trip.

The organ allocation process is constantly under review and revision by these UNOS committees, all done open to public preview and comment.  Currently, a concept known as “net benefit” is used as a basis for ongoing changes in allocation policy to insure that scarce organs are going to patients who will receive most long term life-years benefit from the right gifted organ.  Strict rules and constant oversight insure that organs go to those in most urgent need, not just those who waited the longest.  We may see a critical patient sometimes getting a liver transplant, as one example, with short wait times. This may seem unfair to another who, less ill, can still wait for their transplant while that other life is saved “just in time.”  It’s a balancing act that is constantly simulated, reviewed and improved, with the results then compared to the expected outcomes for confirmation or correction within those committees.

We see and are concerned that the national waiting list is constantly growing.  But realize that this is due to the success of organ and tissue transplantation and people surviving longer with now older bodies that need replacement organs.  Patients are finding out about transplant success as an option to their condition – all good news.  Not a day goes by that we don’t read or hear about the results of increased living donations.   Now that the “paired donation” process is allowing a living donor and their unmatched recipient to share kidneys among a chain of (most recently I saw 14…) individuals, the waiting list benefits as those transplanted are removed in that chaining process.   Yes, I feel amazed and hopeful in seeing progress like that.

And also there is good news in that organs donated and organs transplanted have increased significantly over the past decade through the work of national “breakthrough collaboratives.”  These cooperative nationwide efforts have served to both identify and spread the “best practices” of organ and tissue donation to hospitals and OPO’s across the country, especially those with the highest donation environments.  That growth continues but at a slower pace recently, calling for even more work in educating everyone about this urgent need.  But that’s where you and I come in. 

Patients are the living examples of both the need and the success of transplant today.  As you wait for your transplant, and again especially after recovering from a transplant, spread the word with your personal life experience as evidence of that need/success.  The most effective message is that one-on-one face to face that only you and I can give.  Remember, the lives you save in promoting organ donation may be both yours and mine!

From Bob Aronson

If you would like to donate money to help these Aizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF).  You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/  

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

Also…visit and join my Facebook site, ORGAN Transplantation Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

Ending the Organ Shortage Through Regeneration

I’ve written about regenerating organs in the past and found that while many like the idea many others think the process would violate some religious principles so let’s put it in perspective.

First, it is important to define regeneration.  Your body already regenerates some organs on its own.  For example, have you ever cut yourself and then noticed that within a short time the cut disappears and there is no evidence of the cut on your skin.  That’s because skin, the largest organ in the human body, regenerates itself.  Another human organ with the same capability is the liver, which is why a person can donate a part of their liver to another person who needs a transplant.  Both the donor and the recipient’s liver parts can then re-grow into normal, healthy livers. 

Scientific or technological regeneration of organs is not possible now but could be in a few years.  Apparently there are several methods that could be used that would allow us to grow new organs if the old ones become diseased or damaged.  For example if a person suffers from a weakening of the heart muscle (cardiomyopathy) we might be able to replace the old heart with one grown from our own cells.  That means there would be no rejection because the body would not recognize it as a “foreign” object like donated hearts.  Subsequently there would be no need for the very expensive anti-rejection medication that transplant patients must take for the rest of their lives. 

At this moment there are over 110.000 people on the U.S. transplant list.  All of them will die unless they receive a life saving organ and those organs are only available from voluntary living or deceased donors.  Unfortunately only about 40-50 percent of Americans are donors and that means many of the people on the list will die waiting.  It does not appear that the U.S. will change the method of obtaining donors any time soon so we have two alternatives, regenerating organs or developing much more sophisticated mechanical organs.  Growing new organs may be preferable because they would be real and would not be rejected by the body but additionally such an achievement could mean the end of the organ shortage and that’s why there is so much excitement surrounding the issue.

The use of embryonic stem cells to re-grow organs is a method that seems to be the most controversial because some claim that an embryo is a human life and therefore we shouldn’t use them.  But there are other methods as well and we’d like to hear your thoughts about any of them. 

The world famous Mayo Clinic recently announced that regenerative medicine is a top priority for the organization and is moving ahead on some exciting research into using Pluripotent stem cells. “Huh?” You say, “What are they?”  According to Mayo, Pluripotent stem cells come from your own body and have the potential to produce almost any other cell in the body.   Mayo summarizes the process in four steps:

1. Take a few cells from a human.

2. Keep the patient stabilized long enough for more cells to be grown.

3. Re-engineer the cells to turn them into adult Pluripotent stem cells (the kind that can be triggered to change into any tissue, without the need for controversial embryonic stem cells).

4. Inject the cells into the damaged tissue of the person from whom they were taken. Or replace the patient’s damaged organ with a new, healthy one (grown from the person’s own cells). http://blog.targethealth.com/?p=11930  

According to the Exploring Stem Cells website (http://www.explorestemcells.co.uk/pluripotentstemcells.html) Pluripotent stem cells provide a chance to get a renewable source of healthy cells and tissues to treat a wide array of diseases such as heart disease and diabetes. Burn victims and those who suffer from autoimmune diseases such as Parkinson’s can all potentially benefit from the use of Pluripotent stem cells.

Pluripotent stem cells have a vast potential for the treatment of disease, namely because they give rise to the majority of cell types in the human body. These include muscle, blood, heart and nerve cells. Another potential use for Pluripotent stem cells involves the generation of cells and tissues for use in transplantation.

Pluripotent stem cells can evolve into specialized cells that ultimately can replace diseased cells and tissues. Drug research is another area that Pluripotent stem cells may benefit. Animals are a commonly used model to assess the safety and use of drugs. Instead of initially testing drugs on animals, they can be evaluated through testing on cells grown from Pluripotent stem cells. Those drugs that appear tolerated and safe can then progress to testing on animals and finally, humans.

There are several areas of research that offer organ regeneration possibilities like this one just announced this year.  http://www.hplusmagazine.com/articles/bio/print-your-own-designer-organs It would print yes print, new organs with ink jet technology.  It sounds a little complicated and perhaps strange but it does offer potential and hope for patients.

If you are really interested in the ethical issues surrounding regenerative medicine then I suggest you take the time to read Wake University’s Ethical Issues in Regenerative Medicine http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1380162

I hope you have found this post to be helpful, perhaps enlightening but no matter what we would like to get your thoughts on this most important issue.  Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.

Visit and join my Facebook site, ORGAN Transplantation Initiative (OTI) at http://www.facebook.com/group.php?gid=152655364765710 the more members we get the greater our potential impact on decision makers who influence all organ transplant issues.  Also, check out my blog https://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.

Organ Donors Are Heroes, Are You?

  (Bob Aronson, the author of this blog, received a new heart on August 21, 2007)

April is National Donate Life Month in the U.S.  It is a time for us to not only become donors but to also encourage others to do the same.  The 18 people who die every day while waiting for an organ is a national disgrace.

Brotherly love is a concept repeated often not only in the old and new testament http://www.eliyah.com/brother.html but in every other religion as well.  How does the concept apply to your life, do you pay lip service to it, or do you live it?

If you were dying from organ failure would you accept a new organ from a total stranger?  If you answered, “Yes,” then it seems logical that a total stranger would accept an organ from you. 

The greatest ethical code ever written consists of just ten words, “Do unto others what you would have done unto you.”  A variation of these words exists in almost every religion http://www.religioustolerance.org/reciproc.htm .  With that in mind, how can anyone possibly choose not to be an organ donor?  It is the neighborly thing to do, it is the right thing to do and, it is the ethical thing to do. 

Polls show that over 90% of us are in favor of organ donation but only about 35% actually become donors.  By not “Getting around to it” you have checked the “No” box on the registration form.  In light of “Brotherly love,” and, “The Golden Rule,” is “NO” really your preference?  Do you really want to take your organs and tissue to the grave while thousands of people die waiting for them?

Organ donors are among the real heroes of our society. They have made a conscious decision to help others live.  Living donors make a tangible sacrifice; they give up a part or parts of their bodies and undergo many inconveniences and some expense to do so.  Donor families often make their decision in the presence of a dying loved one. 

All too often people who are not registered organ donors die and their families must make the donation decision under great emotional stress.  Among these families are parents who agree to share their loved one in order to save lives.  Sometime the loved one is a child.  I cannot even begin to empathize with the rush of emotion they must feel.  Saying, “No” would be the easy thing to say. 

I have a Facebook page called, Organ Transplant Initiative a site with thousands of members who share their thoughts, emotions and opinions with the rest of us.  Following are some comments (edited for brevity) from people who willingly gave permission to recover life-giving organs.

•  My daughter (December 16, 1983 to December 10 2006 was an organ an tissue donor she saved lives.  I know you are in heaven, you are my angel.  Rest in peace.  Love an miss you sweetie every day.  Please be an organ donor. 
• We make a great family don’t we.  My daughter 29th Oct 1983 -6th Sept 2004, saved 4 lives here in Australia.  
• She is in heaven…She’s in the same place as my husband, he too was an Organ Donor saving 4 people here in Illinois. 
• I am also the mother of an organ donor…my son, Patrick saved 7 lives and made a difference in 3 others.
• My daughter was also an organ donor. By giving, our daughter made a difference in someone’s life. 
• I… donated a kidney to my friend 6 weeks ago and it was the absolute most life-changing experience of my life. It was amazing! The Lord is the One who set the whole plan in motion and ordered every step throughout the evaluation process and surgery. God bless you.

 And — there are grateful organ recipients, too.

•  Thank you for your wonderful gift of life.  If it wasn’t for generous people like you…I wouldn’t be here today:) I am a liver transplant recipient and waiting for a kidney. Love & God Bless 
• I am very, very sorry for the loss of your daughter. It is so scary for me to even think about. THANKS SO MUCH for making the decision to donate all of her organs. She’s definitely an angel living on in many. My aunt is waiting on a lung transplant…which, of course, is bittersweet. Bless you and your family! 
• My daughter was killed in a car accident 17 years ago at the age of 14. She was an organ and tissue donor, too. We can help others to understand the importance of making the decision to become an organ and tissue donor.  
• You are my hero for donating her organs.  My husband and I are waiting for our hero. My husband has been… on the liver transplant list for 3 years now. Words will never be enough for what you have done. May God bless you and your family. Love and prayers. 
• May god continue to bless your family. My brother received the gift of a kidney many years ago. We never knew the circumstances as to how we received it but we give many thanks to the family out there who made the conscious decision to donate. Thank You.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

 You are also invited to join Facebook’s Organ Transplantation Initiative (OTI)  a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

End the Shortage. Clone Organs?

(Bob Aronson, the author of this blog, received a new heart on August 21, 2007)

People who need an organ transplant face two hurdles; one is the limited availability of organs and the second is the possibility that if you do get an organ your body might reject it. 

 

First let us discuss the donor issue.  Since the national Organ Transplant Act of 1984 The United States has depended on the altruistic motive for obtaining organs.  That means we must depend on people becoming organ donors voluntarily through the goodness of their hearts.  Unfortunately despite increasing efforts the gap between those who need organs and the number of organs available is steadily increasing.  Only about 35 percent of Americans are donors and with over 100,000 people on the transplant list thousands are dying each year because of the lack of donor organs.  Many more thousands probably die because, for whatever reason, they never got on the list.  We’ve tried the altruistic method now for twenty-six years and must admit that it simply isn’t working.

 

The second issue is rejection.  Without anti-rejection drugs most of us who have been transplanted would likely reject our new organs and die within a short time of undergoing the surgery unless the new organ came from an identical twin.  Short of that, though, there is always a risk.  Some people die even with anti-rejection drugs like Cyclosporine.  So what’s the solution?  There is one potential remedy that seems to make the most sense despite its potential for extreme controversy and that is cloning.   

 

I’m not talking about cloning human beings for their organs but rather cloning specific organs.  It is called therapeutic cloning as opposed to reproductive cloning.  Engaging in therapeutic cloning would solve the two problems I outlined.  It would greatly diminish or even end the organ shortage and, because we would be using our own cells for the cloning process, our bodies would not reject the organs and there would be no need for anti-rejection drugs which, in turn, would reduce the cost to the patient, insurance companies and the government.  

While cloning human organs is theoretically possible success rates have been very low and very expensive.  But, according to the Human Genome Project, http://www.ornl.gov/sci/techresources/Human_Genome/elsi/cloning.shtml#organsQ “Scientists hope that one day therapeutic cloning can be used to generate tissues and organs for transplants. To do this, DNA would be extracted from the person in need of a transplant and inserted into an enucleated egg. After the egg containing the patient’s DNA starts to divide, embryonic stem cells that can be transformed into any type of tissue would be harvested. The stem cells would be used to generate an organ or tissue that is a genetic match to the recipient. In theory, the cloned organ could then be transplanted into the patient without the risk of tissue rejection. If organs could be generated from cloned human embryos, the need for organ donation could be significantly reduced.”

 

Experts say that the benefits of organ cloning are almost too numerous to list but I will name just a few.

• Skin for burn victims
• Vital organs like hearts, lungs, livers and kidneys could be produced.
• Bone marrow for those who suffer with leukemia.
• Genetic therapy for Cystic Fibrosis.
• We may learn how to turn cells on and off and therefore develop a cure for cancer.
• We may be able to grow new nerves for spinal cord injuries and perhaps put the wheelchair industry out of business.

Yes, much of this is wistful thinking but researchers say it is possible, that more effectively treating or even curing some diseases may not be that far away.  What do you think?  Is it morally or ethically acceptable to clone organs?  Whatever your position we would all like to hear the rationale for your decision. 

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

In Honor of Organ Donors and their Families

We read and hear a great deal about the shortage of organs, incredible stories about “nick-of-time” transplants, multiple transplants and innovations in transplantation but we don’t hear much about the donors who make this all possible.  Being an organ donor is one of the most unselfish, compassionate and noble gestures one can make.  It is particularly noble because in most cases the donor will not be around to hear the praise and thanks.  Paying tribute to donors and their families is one of the most important things we can do.  These mostly anonymous people deserve to be in our thoughts and prayers every minute of every day. 

As you know I am a heart transplant recipient, I only know that my donor was a 30 year old male from South Carolina, nothing more.  I have written to the donor family expressing my gratitude but, like many donor families, they have chosen to remain anonymous.  There are many more, however, who choose to be public about their experience and how we support and honor them is the subject of this blog. 

Prior to my retirement I was honored to have as a client, LifeSource, an organ procurement organization (OPO) that serves Minnesota, the Dakotas and part of Wisconsin.  They were not only a valued client but also became dear, dear friends.  Rebecca (Becky) Ousley is one of the many dedicated people who help to further the LifeSource mission.  Like most OPOs LifeSource does a wonderful job of promoting organ donation and coordinating transplants.  But they are so much more than that, they offer heart felt support to the living, too, especially donor families.  Below is a reprint of their latest blog.  Please read and comment either to this blog or directly to LifeSource at http://www.life-source.org/

From “The Source” by Becky Ousley, LifeSource

One of the things I find remarkable about the work we do at LifeSource is the extent to which we are committed to supporting donor families, both at the time of donation and for years afterward.  Donor families are the cornerstone of the work that we do – without them there would be no transplants.  It is an incredibly generous gift.

I’m always so excited to tell people about this, as many people don’t realize that donor families receive this kind of support in the months and years following donation.  At LifeSource donor families are part of our aftercare program for as long as they wish; we have some families that have been coming to our events for nearly 20 years!   In addition to receiving support and remembering their loved ones, these long time donor families are also able to provide hope and perspective to our families that are more newly bereaved.  That too, is a wonderful gift.

Part of our aftercare program involves facilitating letters between transplant recipients and donor family members.  Either party can write to the other; often, recipients want a chance to say thank you for their gift of life or donor family members may want to share memories about their loved ones.  Donor families and recipients can request to have direct contact with one another and, sometimes, they even meet.  These are often very rewarding relationships.

This was the case today, when I was honored to attend a donor family and recipient meeting with my colleague Jill, whose job it is to support these families.  She connected this pair after some persistent detective work, as the donation and transplant took place more than 40 years ago in 1966!  It was an incredible meeting and I think we were all touched when Steve, the kidney recipient, immediately hugged the donor’s sister and told her he had been waiting for 43 years to give her that hug.

KARE-11 was there to document this wonderful meeting and I encourage you to watch the story by clicking here.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

23% of Donors Can’t Pay For A Transplant

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I have written before about the inequality of the organ transplant system but the following information caused me and I hope you, too, to consider the topic again.  It is particularly important now because it is an election year and now is the time to put pressure on candidates to make changes in the current health care system.  Here is but another short chapter. 

 

According to a study by Southern Methodist University, http://www.smu.edu/newsinfo/excerpts/cardiac-donation-ethics.html)

“Twenty three (23) percent of organ donors are uninsured.” That means that despite being donors, they would not be eligible for transplants because they could not afford the cost of the procedure. The study goes on to say, “Financing an organ transplant out-of-pocket is prohibitive for all but the wealthiest of Americans. The estimated costs for a heart transplant during the first post-operative year is $478,900, according to the health-care consulting firm Milliman USA. Liver transplant patients typically incur about $393,000 in expenses during the first year”  (Important note…There is no cost associated with being a donor, the recipient’s insurance pays for all charges.  The recipient, though, must have the financial resources to pay for the procedure or he/she will likely be denied a new organ).

 

As an aside, this information makes LifeSharers claims of equity even more absurd, unless LifeSharers will pay the cost of a transplant for the approximately 23 percent of its 11,000 plus members (2,530 people) who presumably lack the finances to afford a transplant..

 

One approach that would make the system more equitable is a national healthcare system that would provide funding for those people who otherwise would fall through the cracks.  At this point, the United States is the only industrialized western nation that does not provide the kind of health care of which I speak.

Additionally, under a national or universal health care system we might be able to address the following sorry statistics: (http://cthealth.server101.com/the_case_for_universal_health_care_in_the_united_states.htm) 

• The United States ranks 23^rd in infant mortality, down from 12^th in 1960 and 21^st in 1990
• The United States ranks 20 in life expectancy for women down from 1 in 1945 and 13 in 1960
•  The United States ranks 21 in life expectancy for men down from 1st in 1945 and 17 in 1960.

If you really care about an equitable health plan in the U.S. write to your Congressperson or Senator now.  Election years are about the only time elected officials really listen…well, kind of.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

Please visit and join my Facebook site, ORGAN Transplantation Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ .   The more members we get the greater our impact on increasing life saving organ donation.