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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.

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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.

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.

Stop the Insanity Now!


(The writer, Bob Aronson, got a new heart on  August 21, 2007 at the Mayo Clinic in Jacksonville, Florida.  He has been an outspoken advocate for blood, organ and tissue donation, transplantation and related issues)

Due to several economic and political factors America’s health care safety net is in danger of disintegrating leaving millions of people with only emergency rooms for their primary care 

As the economy worsened the cost of health care and health insurance continued to rise and millions of Americans whether employed or not found themselves with little or no coverage even if their conditions were life threatening.  A good number of these people were critically ill, jobless, had exhausted their financial resources and could only turn to Medicaid for help (Medicaid is partially funded by the U.S. Government but administered by the individual states).

Many officials were elected by promising tax cuts and deficit reduction.  Then, just a few weeks after the last election, their legislatures went into session and members of the bodies knew their promises were still fresh in the minds of voters.  Unlike the federal government the law does not allow states to end the year with a deficit.  So as the budget disparity grew tax increases were considered to be political suicide even if such moves would have helped solve the problem.  That left legislators with only one way to address the state’s deficit — cut programs.

The top revenue eaters in all states are education and Medicaid.  There have been or will be drastic spending cuts in both areas.   While several states like California, New York, Texas and Florida are considering Medicaid cuts, Arizona took the first step by eliminating the program’s coverage of most organ and tissue transplants. The move immediately affected 98 legal pre-approved Arizona citizens who were promised that Medicaid would cover their procedures.  Texas, threatens to go even farther and some powerful people there want to eliminate Medicaid completely

Experts agree that anyone who is approved to be on the transplant list has a life-threatening illness that requires treatment beyond what standard medical procedures and treatments can provide and that means tissue and/or organ transplants which are highly effective but expensive.   A person can only be “listed” if a physician who specializes in their disease is convinced there is no other way to save the patient’s life.  Then, that same expert must convince a hospital transplant committee, also made up of experts, that the patient’s name should be submitted for listing.  At that point the name and condition of the patient is forwarded to the United Network for Organ Sharing (UNOS) in Richmond, Virginia for placement on the national waiting list.  UNOS coordinates all organ and tissue transplants in the United States.  Currently there are over 110,000 people on that list. 

When Arizona decided to break their promise to the 98 patients they knew that without the promised transplants every one of these terminally ill people would die. Two have passed on already and a Phoenix transplant surgeon says as many as 30 more may die in 2011. 

To make matters worse, the legislature and Governor Brewer used outdated and erroneous data to justify the action saying “Transplants are Cadillac options and aren’t very effective anyway.”  The truth is that the only option to a transplant is death; there are no other medical remedies for these patients  and — organ and tissue transplants do work.  Hearts have a 90-95% success rate (this writer is one of them) kidneys have an 85-90% success rate and lung transplants are successful about 75% of the time.  The American Society of Transplant Surgeons, the American Transplantation Society and UNOS have together protested the use of incorrect information and have provided the Governor and the legislature with the latest data which shows beyond a doubt that the procedures are not only successful but save money in the long run.  Governor Brewer and the Legislative leadership has ignored that information and continue to use the same old incorrect data in order to justify their unconscionable actions.  

The Arizona lawmakers insist that the transplant cuts will save $5 million but the state’s own research indicates the figures are lower — $800,000 in 2010 and $1.4 million in 2011.  Governor Brewer has $30 million in discretionary federal stimulus funds that she could use to save these lives.  She says the money is spoken for but won’t say where it’s going.  In the meantime she found $2 million to conduct algae research and another nearly $2 million to fix a roof. 

Steven Daglas a 30-year-old Republican from Illinois with whom I’ve talked studied the Arizona budget carefully and found 26 ways to cover the cost of the transplants without raising taxes and without negatively affecting other programs.  Acting in a respectful, responsible and helpful manner he presented his findings to the Governor.  He, too, has been ignored.

Now Arizona wants to cut almost 300 thousand people from Medicaid which will place a burden on hospital Emergency Rooms that are required by law to treat anyone who comes in, insured or not.  That most certainly will cause a hike in the cost of healthcare and penalize hospitals and patients at the same time.   If you think ER waiting times are long now wait a few months, it will get much worse.

Governor Brewer in a game of smoke and mirrors has stated that she is setting up a fund for critical cases that should help the Arizona 98 get their transplants.  But the fact is this action may make it even less likely because by removing nearly 300 thousand people from Medicaid the fund will be depleted almost immediately and the likelihood of the transplant patients getting the care they need is below minimal.

Unfortunately this is only the beginning.  Other state legislatures are meeting, too and most of them are watching Arizona very carefully to see what the Grand Canyon State is going to do.

I believe, as do many Americans, that allowing the critically ill to die in order to balance a budget or achieve political gains is wrong and criminal in nature.  This is a civil and human rights issue and no one should have the right to decide who lives and who dies.  In the case of Medicaid those who die will be mostly poor who have exhausted all other alternatives.  We can find absolutely no justification for this cruel and unconscionable action.  It must be stopped, you can stop it.  Let your voices be heard.  Join Facebook’s Organ Transplant Initiative (OTI) and/or Dream of Life Coalition (DLC).and become a volunteer to stop this insanity.

On March 5, 2011 The Dream of Life Coalition will hold a rally at the state capitol in Phoenix, Arizona to send a strong message to Arizona about the immorality of denying Medicaid coverage to transplant patients.  It will start at 9 AM at St. Mathew church. Walk with us and show your support.  There’s a hole in the dam and we have an opportunity to patch it.  Can you stand by and do nothing?

Please view our 7 minute video “A Promise Broken” on www.savethearizona98.com.  Also…there is more information on this blog site about other donation/transplantation issues.  We would love to have you join our Facebook pages, Organ Transplant Initiative  and The Dream of Life Coalition  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.

Give Me Your Tired, Your Poor – and We Will Let Them Die


 (The Author, Bob Aronson, is a heart transplant recipient, former journalist,  former Communications Director for a Minnesota Governor and retired international communications consultant.  He lives in Jacksonville, Florida with his wife Robin)

 

If Medicaid dies so does American morality and compassion.  Due to several economic, political and yes, even some human selfishness factors, America’s health care safety net is in danger of disintegration leaving millions of people with only emergency rooms for their primary care.  Most disturbing is the fact that the great majority of terminally ill patients who depend on life saving organ and tissue transplants, dialysis, radiation and chemo therapy, hospice and other complex surgeries and treatments will simply be sent home to die. It is happening in Arizona and it is likely to happen in many other states as well and but for a committed few is being met with apathy and disdain for those affected. 

 

The danger is imminent but many Americans just don’t seem to care.  If we let this happen America will have lost part of what has made it great, Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!”   These last few lines in a poem by Emma Lazarus, speak for all eternity the words of compassion for which America is known.  If Medicaid dies so do those words on the Grand Lady in the Harbor that inspired so many millions who came to these shores.

 

As our economy worsened the costs of health care and health insurance continued to rise.  Millions of Americans whether employed or not have found themselves with little or no coverage even if their conditions were life threatening.  A good number of these people were critically ill, jobless, had exhausted their financial resources and could only turn to Medicaid for help (Medicaid is partially funded by the U.S. Government but administered by the individual states)

 

Across the width and breadth of the United States many officials were elected on promises of tax and spending cuts so as budget deficits grew tax increases were out of the question, they were considered political suicide.   Unlike the federal government the law does not allow states to end the year with a deficit.  In every state, legislatures meet shortly after election day so the lawmaker’s immediate top priority was budget slashing — often indiscriminate and cruel in its nature.   

 

The top revenue eaters in all states are education and Medicaid.  While there have been some cuts in education most of the emphasis in the new year has been on Medicaid and the cuts and proposed cuts have been both dramatic and life threatening.  While several states like California, New York and Florida are considering huge Medicaid cuts, Arizona took the first step by eliminating the program’s coverage of most organ and tissue transplants.  The move immediately affected 98  pre-approved Arizona citizens who were promised that Medicaid would cover their procedures. 

 

Experts agree that anyone who is approved to be on the transplant list has a life-threatening disease that requires treatment beyond what standard medical procedures and treatments can provide.  In the great majority of cases that means tissue and/or organ transplants which are highly effective albeit expensive will not be available unless you are insured or very wealthy.   A person can only be “listed” if a physician who specializes in their disease is convinced there is no other way to save the patient’s life.  Then, that same expert must convince a hospital transplant committee, also made up of experts, that the patient’s name should be submitted for listing.  At that point the name and condition of the patient is forwarded to the United Network for Organ Sharing (UNOS) in Richmond, Virginia for placement on the national waiting list.  UNOS coordinates all organ and tissue transplants in the United States.  Currently there are over 110,000 people on that list. 

 

When Arizona decided to break their promise to the 98 patients they knew that without the promised transplants every one of these terminally ill people would die. Two have passed on already and a Phoenix transplant surgeon says as many as 30 more may die in 2011 – and that’s just in Arizona and  just transplant patients.. 

 

To make matters worse, the Arizona legislature and Governor Brewer used outdated and erroneous data to justify the action saying “Transplants are Cadillac options and aren’t very effective anyway.”  The truth is that the only option to a transplant is death; there are no other medical remedies for these patients.  And — organ and tissue transplants do work.  Hearts have a 90-95% success rate (this writer is one of them) kidneys have an 85-90% success rate and lung transplants are successful about 75-80% of the time.  The American Society of Transplant Surgeons, the American Transplantation Society and UNOS have together protested the use of incorrect information and have provided the Governor and the legislature with the latest data which shows beyond a doubt that the procedures are not only successful but save money in the long run. http://www.a-s-t.org/news/new-ast-asts-unos-review-concludes-az-medical-data-shows-eliminated-transplants-work  (You can also go the Website of the American Society of Transplant Surgeons web page and click on the first item, December 9, 2010 Arizona Transplant Cuts Based on Flawed Data http://www.asts.org/thesociety/positionstatements.aspx) Governor Brewer and the Legislative leadership have ignored that information and continue to use the same old incorrect data to justify their inhuman action.  Is this any different from perpetuating a lie?  

 

The Arizona lawmakers insist that the transplant cuts will save $5 million but the state’s own research indicates the figures are lower — $800,000 in 2010 and $1.4 million in 2011.  Governor Brewer has $30 million in discretionary federal stimulus funds that she could use to save these lives.  She says the money is spoken for but won’t say where it’s going.  In the meantime she found $2 million to conduct algae research and another nearly $2 million to fix a roof. 

 

Steven Daglas a 30-year-old Republican from Illinois studied the Arizona budget carefully and found 26 ways to cover the cost of the transplants without raising taxes and without negatively affecting other programs.  Respectfully he offered his findings to Governor Brewer and the legislature.  He, too, has been ignored.

 

Now Arizona wants to cut almost 300 thousand people from Medicaid which will cause a hike in the cost of healthcare and insurance while penalizing hospitals at the same time.  If this legislation is passed and spreads to other states and a flood of patients of Noah’s Ark proportions hits hospital emergency rooms the death toll will mount  into the hundreds of thousands if not millions and health care and insurance costs will rise until only the ultra-rich will be able to afford them.  That’s the scenario friends.  You can deny my hypothesis, you can call it exaggerated and sensationalized but the fact remains that cutting Medicaid to the bone or eliminating it altogether as Texas would like to do, will cause a major financial and health disaster unlike anything America ever seen. 

 

Other state legislatures are meeting now, too, and most of them are watching Arizona very carefully to see what the Grand Canyon State is going to do.  If we allow Arizona to balance its budget by refusing to treat the first 98 critically ill patients and then cutting another 300 thousand from Medicaid roles, the green light will be seen from California to New York and the disaster will have begun.

 

Many of us in Organ Transplant Initiative and other organizations believe that allowing the critically ill to die in order to balance a budget is wrong.  This is a civil and human rights issue and no elected official(s) should have the right to decide who lives and who dies.  In the case of Medicaid those who die will be mostly poor who have exhausted all other alternatives.  We can find absolutely no justification for this cruel and unconscionable action.  Politicians who pander to base selfishness and allow people to die are really no different from the street thug who maims and even kills an innocent citizen for their money.

 

Please view our 7 minute video “A Promise Broken” on www.savethearizona98.com.  Also…there is more information on this blog site about other donation/transplantation issues.  We would love to have you join our Facebook pages, ORGAN Transplant Initiative  and The Dream of Life Coalition  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.

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.comhttp://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.

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

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