Too Old To Get H1N1 Vaccine November 19, 2009
Posted by Bob Aronson in journaling.12 comments
If you are over age 64 and you want the H1N1 flu vaccine (swine flu) forget it! Even if you meet the criteria set forth by the Centers for Disease Control (CDC) you will not be allowed to get the vaccine. I know, today I was refused a shot. This development has great significance for everyone over 64 and especially transplant patients with compromised immune systems.
According to the CDC website (http://www.cdc.gov/h1n1flu/highrisk.htm) these are the criteria for getting an H1N1 shot:
1. People at High Risk for Developing Flu-Related Complications
- Children younger than 5, but especially children younger than 2 years old
- Adults 65 years of age and older
- Pregnant women
2. People who have medical conditions including:
- Asthma
- Neurological and neurodevelopmental conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability (mental retardation), moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].
- Chronic lung disease (such as chronic obstructive pulmonary disease [COPD] and cystic fibrosis)
- Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)
- Blood disorders (such as sickle cell disease)
- Endocrine disorders (such as diabetes mellitus)
- Kidney disorders
- Liver disorders
- Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
- Weakened immune system due to disease or medication (such as people with HIV or AIDS, or cancer, or those on chronic steroids)
I fit into three of the criteria. I have asthma, COPD (chronic obstructive pulmonary disease) I am over 65 and because of my heart transplant two years ago I have a suppressed immune system. My transplant cardiologists strongly recommend that people like me should get the H1N1 shot yet when I showed up at the clinic today I was told by the nurse that I couldn’t have the shot because I was over 64. I double and triple checked to see if that is true and it is. The government doesn’t care if your health is at great risk from H1N1 if you are over 64. What I infer from this regulation is that CDC has determined that people my age don’t have much time left anyway so lets not waste vaccine on them even if they meet other criteria.
I would immediately agree that children and pregnant women should get the vaccine ahead of all others. That only seems fair and fairness is all I ask. Never before in my life have I been told I was too old for something. This smacks of governmental age discrimination.
If you agree that this situation is unfair and discriminatory let your congressional delegation know. Call them, email them or stop them on the street. CDC should not be allowed to say one thing in public and then introduce restrictions in private.
Please visit and join my Facebook site, Organ Transplant Patients, Families and Friends at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
If You’re Not Disabled, Don’t Park There! November 2, 2009
Posted by Bob Aronson in Bobservations.7 comments
I’ve taken time off from blogging for the last few months because I was taking care of myself with my own self styled mental/emotional therapy. For fifty years my parents ran a “Mom and Pop” side street grocery store in my home town of Chisholm, Minnesota. To honor and remember them I have built from memory and a pitiful few photographs, a scale model replica of the store and the attached house. The project took the better part of two years and was completed yesterday Sunday November 1, 2009. When I get some pictures taken I will post them.
As to blogging, there is something that has bothered me for quite some time and that is the fact that there seems to be a great number of people using disabled parking illegally. As you know I had a heart transplant a little over two years ago. My new heart is working extremely well and if anything I have more energy than ever before. Unfortunately I have COPD (chronic oppressive pulmonary disease) which makes it extremely difficult for me to breathe. Almost any exertion leaves me out of breath so I have a disabled parking permit and use the spaces often. They are a Godsend when you can’t walk very far.
What disturbs me is the number of people who think the rules don’t apply to them and when it comes to disabled parking they fall into two categories, 1) those without permits that ignore the signs and 2) those that have permits that belong to someone else.
The first group is easy to deal with. If you see a vehicle in a disabled space that has neither special license plates nor a permit hanging from the rear view mirror, notify the authorities. In most cases there is at least a $250 fine for this deliberate violation of the law and of the rights of the disabled.
The second group is more difficult to deal with. I fully recognized that not every disabled person is in a wheelchair, I’m not so in many cases when I see people hang the tag on the mirror and walk to the store I ignore it. People deserve the benefit of the doubt. But, when I see people park, display the permit and then sprint across the lot into a store I get angry. Too many able bodied people use permits issued to friends or family members. I know of some people who are using permits that were owned by deceased relatives. How disrespectful can you be?
Many people who are awaiting transplants but are ambulatory need those spaces. They are not reserved for lazy people but rather for those who genuinely need to be close because they can’t walk very far. Many other people who are not transplant candidates also have very serious disabilities that require them to park as near to their destination as possible. Without disabled parking many people would be forced to either stay at home or face the danger of having to walk farther than they are physically capable of doing.
I was at an art show with my wife recently and I parked in one of the few disabled spaces that were available. Two burly guys in a pickup truck pulled in next to me in the space reserved for Vans for the disabled and began to sprint away. I rolled down the window and told them it was not a parking space and that they should move. They got quite belligerent and after several profanities and hand gestures they grudgingly moved — a half block away. I’ll bet the walk absolutely exhausted them.
You should do the same. Challenge people who park illegally, notify the authorities. The space they occupy may be the one you or a loved one will need someday.
Also, please visit and join my Facebook site, Organ Transplant Patients, Families and Friends at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Obesity, Diabetes and Organ Failure April 20, 2009
Posted by Bob Aronson in Transplant prevention.11 comments
Each year thousands of people die because of a lack of organs for transplantation. Current efforts to increase the supply of organs are woefully inadequate. The altruistic method (becoming a donor out of the goodness of ones heart) simply doesn’t work well enough. Fewer than fifty percent of Americans are organ donors. It does not look like the altruistic approach is going to change any time soon so we must explore every possibility.
One way of increasing the supply of organs for transplant is to reduce the demand and that can be done in part by changing lifestyles. Some of the causes of organ failure are preventable. This blog will focus on two contributors to the rising need for organs; obesity and diabetes. Both could be far better controlled than they are currently simply by eating properly and exercising regularly.
Let’s talk obesity, the second leading cause of unnecessary death in America. According to the American Obesity Association (AOA). http://obesity1.tempdomainname.com/subs/fastfacts/obesity_what2.shtml Approximately 127 million adults in the U.S. are overweight, 60 million obese, and 9 million severely obese Obesity is a disease that affects nearly one-third of the adult American population (approximately 60 million). The number of overweight and obese Americans has continued to increase since 1960, a trend that is not slowing down. Today, 64.5 percent of adult Americans (about 127 million) are categorized as being overweight or obese. Each year, obesity causes at least 300,000 excess deaths in the U.S., and healthcare costs of American adults with obesity amount to approximately $100 billion.
Fox news quoted a Web MD report http://www.foxnews.com/story/0,2933,215604,00.html that says nine out of ten obese people develop type 2 diabetes and while obesity does not cause diabetes, research shows the two are closely related.
Net Wellness (http://www.netwellness.org/healthtopics/diabetes/faq3.cfm) defines diabetes as the inability of glucose to enter the cells. The result is that the bloodstream has a high amount of glucose and cells are not able to produce energy for the body. When diabetes is not carefully managed by keeping the amount of sugar in the blood at the right level, the resulting high glucose amounts wreak havoc on nearly every organ system in the body. The report goes on to say that as many as 65% of people diagnosed with diabetes will eventually die of a heart attack or a stroke and nearly 1 in 3 diabetics will experience kidney failure. For more information on diabetes visit the National Diabetes Education Program Website at: http://www.diabetes.niddk.nih.gov/dm/pubs/type1and2/what.htm
The American Diabetes Association (ADA) offers comprehensive information on diabetes prevention and the value of proper nutrition and exercise along with symptoms of disease http://www.diabetes.org/diabetes-prevention/how-to-prevent-diabetes.jsp
While I will continue to work to develop other methods of increasing the supply of transplantable organs, all of us should take every measure to prevent diseases that can affect our organs. As in most cases prevention is the best cure for organ failure.
Minnesotan’s Creative Efforts to Increase Organ Donation April 15, 2009
Posted by Bob Aronson in Innovative methods for increasing organ donation.4 comments
LifeSource is an Organ Procurement Organization (OPO) in St. Paul, Minnesota. I know the people there quite well and was so impressed by their latest posting in “The Source” I decided to reprint it so others could benefit from it as well. I am often asked, “What can I do to promote organ donation besides becoming a donor myself?” Well, there are many answers but this blog offers a couple of excellent examples.
The Source
by Jeff Richert
http://donatelife.wordpress.com/
We have many exceptional, creative and energetic volunteers. I want to focus on just two of them and what they are doing to celebrate National Donate Life Month in April.
Judy is a long time LifeSource volunteer from Fergus Falls, MN. She lost her daughter, Jenny, in May of 1993. Judy’s activities for April included a radio interview about donation and drunk driving that she has done for many years. She also coordinates a unique program with her beautician.
In addition to providing space for a display and information table, her friend who owns the “ExSalonce” has a special promotion during April. She gives a 20% discount to customers who either show that they have “Donor” on their license or to those who sign up as donors for the first time! What a unique and fun way to communicate our message during April!
Suzanne Ruff is a LifeSource volunteer who knows too well the ravages of Polycystic Kidney Disease (PKD). For several generations, her family has suffered from this often fatal genetic disorder. For National Donate Life Month and for National Donor Sabbath for at least two years, Suzanne has communicated with the Archbishop of St Paul and Minneapolis to convey information to him about donation and transplantation.
Earlier this month, Suzanne received a response from the Archbishop’s office saying that he is both supportive of our cause and that he will try, ” … to the best of my ability, to mention it in my Catholic Spirit column.” Thank you Suzanne for your perseverance and for helping us to communicate to our friends in high places.
Judy and Suzanne’s activities for April are not big and flashy acts. They don’t involve billboards or spot lights. But ultimately their work will contribute to the many activities of our volunteers that help ensure that thousands of people hear about the life saving miracles of donation and transplantation!
I hope reprinting this blog inspires people to do something special to promote organ donation. If each of us could convince just one person to become an organ donor we could end the shortage and be able to offer transplants to everyone on the list.
Also, please visit and join my Facebook site, Organ Transplant Patients, Families and Friends at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Liver Transplant Scam Exposed March 26, 2009
Posted by Bob Aronson in SCAMS.add a comment
It is unfortunate but there are some people who seek to take advantage of the misfortune of others. While I find it hard to believe that anyone would take advantage of people seeking organ transplants, it happens and via this blog I will endeavor to expose as many of these people as I can.
Remember, if it seems too good to be true, it probably is. Before you make any decisions about potential transplant possibilities in other countries check with your local Organ Procurement Organization (OPO), The United Network for Organ Sharing (UNOS) www.unos.org, or your state’s Attorney General’s office.
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On March 19, 2009 Sue Weibezahl Porter of the Syracuse NY Post-standard wrote the following story under the headline: (http://blog.syracuse.com/healthfitness/2009/03/international_organ_transplant.html)
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Organ transplant scam preyed on dying people, ends with capture of Syracuse man
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Federal prosecutors announced this afternoon that Jerome Feldman, 67, was captured in the Philippines and will be extradited to Syracuse on charges he scammed dying people by setting up phony organ transplant surgeries. Feldman had them wire money — more than $400,000 — to the Chase Bank in DeWitt and also had postal boxes in Fayetteville and DeWitt for more checks, authorities said.
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It’s not the first time he’d been in trouble. His New York State medical license was revoked. Feldman, who has family ties in Central New York, allegedly trolled Web sites looking for people who needed transplants. Using phony names, he would promise to set up the surgeries if the people would wire money in advance. FBI investigators have identified at least five victims, most of whom died after arriving in the Philippines and discovering the doctor who was supposed to perform the life-saving surgery did not exist. Feldman faces up to 20 years in federal prison and fines totaling more than $250,000.
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Authorities are also trying to freeze, then seize, his assets.
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If and as we find more of these frauds who prey on people’s worst fears and infirmities we will expose them. In the meantime if you are aware of a person or organization that appears to be a scam let us know and we’ll do what we can to get to the truth.
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Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the 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 have saved or affected over 50 lives.
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Also, please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. I ask, too, that you visit and join my Facebook site, Organ Transplant Patients, Families and Friends at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
“First Person Consent” Can Increase Organ Donation March 22, 2009
Posted by Bob Aronson in Organ Donation.7 comments
In the March 2009 edition of the Virtual Mentor The American Medical Association Journal of Ethics has published a paper in support of “First Person Consent,” a concept that could increase the number of organs available for transplantation. Now effective in 42 states, “First Person Consent” laws dictate that a documented donation decision like a donor card, drivers license etc, is legally binding and does not require the consent of any other person upon the death of the donor. That means if a person has documented their decision to be a donor, families have no legal right to overrule it. You can read the report in its entirety at http://virtualmentor.ama-assn.org/
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I’ll explain the rationale in a moment but in order to make the concept effective two things must be done, 1) more people need to document their wishes. That means that we should consider enacting laws in every state that require people to make a decision on donation when they renew their drivers license. 2) Medical personnel need to defer to the expertise of Organ Procurement Organizations (OPOs).
To further quote from the AMA report,”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. “The refusal of families to grant permission is a major impediment to organ donation. If, despite the law, we must get family consent, 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.
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 are followed [1].(clicking on the number will provide further information).”
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The AMA report continues, “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 who made a decision themselves and declined to donate the organs subsequently regretted their decision [2].”
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The Virtual Mentor also says, “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.
The AMA report is very emphatic, though, on the need for OPOs to develop and maintain a close working relationship with donor families. “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.
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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.”
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I am a believer in adopting a system of presumed consent. One in which people could opt out rather than opt in. In countries where this has been tried donation rates have increased substantially. But presumed consent requires a change in the law. First Person Consent is already the law in all but 8 states. What needs to be done is to fine-tune the system so we can eliminate the obligation OPOs and hospital officials feel to get donation permission from families. Under First Person Consent laws no permission is necessary and that could mean a significant increase in available organs. Perhaps if the AMA suggestions were adopted we might be a step closer to closing the organ donation/transplantation gap.
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Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the 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 have saved or affected over 50 lives.
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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Families and Friends at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Kidney For Sale; The Case for Compensating Donors March 17, 2009
Posted by Bob Aronson in Donor Compensation.6 comments
THIS IS NOT AN OFFER TO BUY ORGANS. ATTEMPTS TO SELL ORGANS HERE WILL NOT BE PUBLISHED.
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Let me begin by quoting Sally Satel M.D., Kidney transplant recipient and Resident Scholar American Enterprise Institute: (Kidney for Sale, Lets Legally Reward the Donor http://www.aei.org/publications/filter.all,pubID.29515/pub_detail.asp)
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“America faces a desperate organ shortage. Today, more than 78,000 people are waiting for a kidney transplant; only one in four will receive one this year, while twelve die each day waiting for help. Not surprisingly, many patients are driven to desperate measures to circumvent the eight-year waiting list—renting billboards, advertising in newsletters, or even purchasing organs on the global black market. Altruism (the current system where one donates an organ through the goodness of their heart) is an admirable but clearly insufficient motivation for would-be donors.
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According to the International Society of Nephrology, kidney disease affects more than 500 million people worldwide, or 10 per cent of the adult population. With more people developing high blood pressure and diabetes (key risks for kidney disease), the picture will only worsen.
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There are nearly two million new cases of the most serious form of kidney disease–renal failure–each year. Unless patients with renal failure receive a kidney transplant or undergo dialysis–an expensive, lifelong procedure that cleanses the blood of toxins–death is guaranteed within a few weeks”
The argument against paying people for their organs (living donors of kidneys and livers) is that the practice would prey on the poor. Supposedly only people who are in desperate need of money would sell their organs. “The rich or reasonably well off,” the argument goes, “Don’t need the money so few of them would become donors under such a system.” Additionally, wealthy people could buy organs from the poor but the poor could not afford to buy organs if they needed them. So the question; “Is it ethical to compensate people for their organs?” My answer is, probably not – if the exchange is simply cash from the recipient to the donor for a kidney. But what if there are other considerations? Dr. Satel offers some interesting options:
“My colleagues and I suggest a system in which compensation is provided by a third party (government, a charity or insurance) with public oversight. Because bidding and private buying would not be permitted, available organs would be distributed to the next in line–not just to the wealthy. Donors would be carefully screened for physical and psychological problems, as is currently done for all volunteer living kidney donors. Moreover, they would be guaranteed follow-up care for any complications.
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Many people are uneasy about offering lump-sum cash payments. A solution is to provide in-kind rewards–such as a down payment on a house, a contribution to a retirement fund, or lifetime health insurance–so the program would not be attractive to people who might otherwise rush to donate on the promise of a large sum of instant cash. The only way to stop illicit markets is to create legal ones. Indeed, there is no better justification for testing legal modes of exchange than the very depredations of the underground market.”
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Dr. Satel goes on to say that, “Momentum is growing. In the British Medical Journal, a leading British transplant surgeon called for a controlled donor compensation program for unrelated live donors. Within the past year, the Israeli, Saudi and Indian governments have decided to offer incentives ranging from lifelong health insurance for the donor to a cash benefit. In the United States, the American Medical Association has endorsed a draft bill that would make it easier for states to offer non-cash incentives for donation.”
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Dr. Satel and her colleagues call on Congress to reform the 1984 National Organ Transplant Act (NOTA), which makes it a felony to provide material reward for an organ. The authors suggest that:
• Congress should amend NOTA so that existing criminal penalties for selling and brokering organ sales between individuals do not apply to any economic incentives offered by federal, state, or local governments. Such a revision would not require any such incentives; it would simply allow states and federal agencies to undertake experimental incentive programs.
• Compensation to prospective donors could take the form of health insurance, tax credits,
tuition vouchers, or contributions to tax-free retirement accounts.
• Rigorous protections for the safety of donors would be created.
• Because the compensation would be provided by the government, every patient in need
would benefit, regardless of income.”
The issue of paying for human organs is controversial to say the least but that does not mean it can’t or won’t work. Iran, which is usually not a good example for much of anything, allows for such a program and the result reportedly is that their waiting list has sharply declined and in some cases it has diminished entirely.
http://freakonomics.blogs.nytimes.com/2008/04/29/human-organs-for-sale-legally-in-which-country/
What we need in the United States is an open dialogue free of emotional outbursts that would allow for a small pilot program to test the concept. We need universal agreement on the need to elminate organ transplant waiting lists, much like the commitment the National Kidney Foundation made to eliminating the kidney waiting list within ten years. We must also agree, though, that the altruistic approach that we’ve tried for the last quarter of a century does not work. Every year the number of people who die while waiting for a transplant grows, yet we continue to cling to the notion that if we work a little harder more people will become donors. Well, everyone has worked very hard and we are still losing the battle. As I have written before about the United Network for Organ Sharing (UNOS) which regulates the entire process, “It’s not working and it is time we tried something that will work, we must stop the dying.” We’ve got to do something new and a pilot program somewhere in the United States would be a great way to start. What have we got to lose?
Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the 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 have saved or affected 50 or more lives.
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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Myths Inhibit Organ Donors, Kill People March 13, 2009
Posted by Bob Aronson in Organ Donation.2 comments
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Sometimes on WordPress, the formatting goes berserk. It did in this post and I apologize for the variances in print style but it was beyond my control.
Some of the greatest barriers to organ donation are urban myths and there are hundreds of them. Primary among them, though, is the tale that doctors will let you die so they can recover your organs. This lie seems to have risen from a single unresolved case in a California hospital in 2006. Before we get to that, though, here are two examples of how this myth manifests itself into supposedly true stories thereby preventing people from becoming organ donors.
- “My wife does not want me to be an organ donor because a few of her friends (who “just so happen to be ER nurses”) claim that when an organ donor is in a life & death situation on the table, doctors will not try and save them so that their organs may be used. This sounds like it defeats the purpose; letting one die so another can live. But, she swears that it’s true.”
- “I heard that having the pink organ donor ticket on your driver license will cause the Paramedics to allow you to die in order to harvest your organs. The rumor claims that due to the long list of people on the organ waiting list, the Paramedics are instructed to allow organ donors to die.”
First and foremost it is important to note that the medical team treating you in a hospital or ER is completely separate from the transplant team. The organ procurement organization (OPO) is not notified until all lifesaving efforts have failed and brain death has been determined by certified neurologists. The OPO does not even notify the transplant team of organ availability until the donor’s family has consented to donation.
Snopes.com, a wonderful source for dispelling myths, rumors and outright lies offers a concise and accurate explanation (http://www.snopes.com/medical/emergent/donor.asp) I encourage you to click on the link and read the entire entry but here are some of the more salient points.
“While the rumor would appear to confirm the belief that physicians involved in harvesting organs will happily sacrifice one patient in their efforts to secure parts for others, such belief overlooks one particular facet of this conjecture: Doctors who fail to provide their best medical care to their patients can and will be sued. As professional healers, they are held to a higher legal “standard of care” than is the average person and thus aren’t afforded the luxury in life or death situations of not attempting to do all in their power to save those whose lives hang in the balance. Additionally, in those instances where patients died, doctors who did decide to scale back care could well be charged with homicide.”
So you might ask, “How did this rumor get started?” Again, according to Snopes:
“The rumor about organ-hungry doctors prematurely offing potential donors gained an unfortunate shot in the arm from a 2006 case in San Luis Obispo, California. Ruben Navarro, a 25-year-old man who suffered from the neurological disorder adrenoleukodystrophy as a child (by his early 20s his mental and physical condition had deteriorated to a point where he was placed in an assisted-care facility), was admitted lifeless and unresponsive to the Sierra Vista Regional Medical Center on 29 January 2006. His organs were subsequently retrieved for transplant five days later. (Those transplants, by the way, never took place because Navarro survived for more than seven hours after he was removed from life support and was given certain drugs, so his organs had deteriorated too much to be usable.)
Prosecutors have charged Dr. Hootan C. Roozrokh, the surgeon who removed Navarro’s organs, with felony counts of dependent adult abuse, mingling a harmful substance (Betadine) and prescribing a controlled substance (morphine and Ativan) without medical purpose. It is their assertion that rather than allow Navarro to die naturally, the doctor knowingly hastened the process by introducing into him excessive amounts of narcotic painkillers and sedatives for the express purpose of killing him. The doctor is also said to have administered the antiseptic Betadine through a feeding tube into Navarro’s stomach while Navarro was still viable, a sterilization procedure typically done after a donor is dead (since it’s likely to kill the living).
Roozrokh’s attorney says Navarro “was going to die shortly, whether in minutes or in hours” and said of the excessive painkillers used that “In that situation, you err on the side of ensuring that he’s pain-free.” Over-medicating the dying with morphine is not at all a new practice; terminal patients are sometimes given unusually high or overly-frequent doses of the drug in an effort (generally unstated but also generally understood by both medical staff and family members in attendance) to help the dying slip through death’s door a bit more quickly and thus terminate sufferers’ torments sooner. Such practice is generally roundly denied when spoken of openly, however.
Dr. Roozrokh continues to practice, pending the verdict in his case.”
If you would like comprehensive information on other organ donation/transplantation myths please visit http://www.iaod.org/myths-organ-donation.htm
Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the 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 have saved or affected over 50 lives.
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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
National Kidney Foundation — “End Kidney Shortage By 2019″ March 10, 2009
Posted by Bob Aronson in New Ideas.4 comments
The month of March is National Kidney Month and March 12, 2009 is World Kidney Day. These dates are significant because they mark the beginning of a commitment by the National Kidney Foundation (NKF) to “End the Wait” for a kidney transplant in the United States in the next decade. This effort needs and deserves your support. Thousands of lives depend on it. At this very moment nearly 80,000 of the 101,000 people on the national transplant list are waiting for kidneys, many of them will die waiting.
There are two sources for kidneys, 1) living donors and 2) deceased donors. While only about half of all donated kidneys come from living donors medical evidence indicates better outcomes for recipients of these life saving gifts. It is also noted that if a living donor lives a healthy lifestyle he/she can have a normal lifespan with just one kidney.
I’m going to let the NKF speak for itself in this blog. I will offer little comment other than to say the organization has committed itself to developing almost every avenue to increase the number of kidneys available for transplant. They have wisely avoided addressing the issue of paying donors for their organs. I will do that in a future blog.
In essence, NKF is advocating a multi-faceted collaborative initiative. What follows are excerpts from that initiative. http://www.kidney.org/news/end_the_wait/index.cfm
“Rather than focusing on single issue tactics, these broad based actions will achieve the common goal that everyone agrees on – ending the wait for a transplant. It uses proven and tested strategies, each of which is already successful in some areas and which should now be implemented everywhere. (The full list of NKF’s Recommendations is attached and is available on the NKF website www.kidney.org)
- We can improve the outcome of first transplants, reducing the need for a return to the waiting list.
- We should pay for immunosuppressive drugs for the life of the recipient.
- The loss of a transplant is one of the leading reasons for starting dialysis. Reducing that problem will make more kidneys available.
- We can improve the health of recipients, transplant them earlier when their condition is better, educate them about their options and ask them sooner, “Do you have a donor?”
- We can also increase the number of organs available from deceased donors.
- We can improve the care of donor families in hospitals and support them while they are with their loved one.
- We can increase the use of proven techniques such as extended criteria donors and donation after cardiac death throughout the country.
- And, we can make sure that donor families don’t incur any additional costs because of the donation, including extra funeral costs.
Increasing the number of living donors is vital to meeting our goal.
- Living donors and potential donors should receive state-of-the-art care and never suffer financially because of their donation.
- We can cover all the costs of donation, including lost wages.
- We can track donor outcomes and make sure they have health care coverage and life insurance for anything that happens related to the donation.
- And, a program of matched donation should be available throughout the United States.
Living donors and potential donors are our constituents, too. NKF will establish a Living Donor Council to support their needs. They should always have the best information about the donation process to help them make decisions that are right for them.
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We also can improve the American system of organ donation and transplantation. Many challenges are resource-based. We can increase the number and skills of people working in transplant programs nationwide to reduce the time it takes to complete the living donation process. All potential living donors should have access to laparoscopic nephrectomy.
Summary
This can be done. It won’t be easy but the goal is worth the effort. We can End The Wait! We can leave existing laws as they are and write new ones that address the whole problem. We can have a dramatic impact on the health of all our patients and our country.
The National Kidney Foundation will commit itself to leading the effort. If the community responds and reaches above individual priorities and single issues, the goal can be met. The challenges are many and the work will be hard. But, it’s the only way to do what our patients need us to do: END THE WAIT!”
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Eating Disorders Destroy Multiple Organs March 8, 2009
Posted by Bob Aronson in Transplant prevention.2 comments
The best way to increase the number of transplantable organs is two-fold; 1) increase the number of organ donors and 2) diminish the need for organs. Only by combining the two will we be able to end the disgraceful upward spiral of people who die while waiting for transplants.
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Eating disorders number among the top organ destroyers of all diseases because Anorexia and Bulimia can destroy virtually all of the organs – making transplants next to impossible. Which organ do you transplant and does it make sense to do so if the patient still suffers from the disease?
Too many people fail to recognize just how dangerous eating disorders can be, and if we are to diminish the need for organs we must address these terrible diseases as early in the process as possible. They are treatable but become less so as the disorders age.
The question is often asked, “Which organs do anorexia and bulimia destroy?” The answer according to wiki answers.com (http://wiki.answers.com/Q/What_organs_does_anorexia_destroy_in_your_body_and_what_are_the_long_term_affects_of_anorexia) is, “Nearly all of them, because of the lack of nourishment.” Wiki adds that the damage goes well beyond what one might expect, “The effects of anorexia and bulimia that can persist throughout the victim’s lifetime are a higher risk of developing osteoporosis later due to the deprivation of calcium, infertility or difficulty conceiving, anemia, stunted growth (in adolescent victims), psycho-neurological problems, ex. depression and anxiety, and neurological problems, ex. seizures, peripheral neuropathy which is a tingling and numbness in the limbs. Diabetics who had anorexia risk a likely chance of developing retinopathy, an eye condition that often causes blindness. Some such as infertility and neurological complications are often permanent.”
Still another source (http://ezinearticles.com/?Long-Term-Effects-of-Bulimia-Nervosa&id=1014462) says, “The heart gets damaged from the constant electrolyte imbalances caused by continuous purging and becomes weaker the longer the disorder continues. Some people even can die from this complication when a weak heart goes into a “heart block”. This is when the heart suddenly stops beating due to extremely low potassium or other mineral deficiency induced by vomiting and laxatives abuse.
Kidney damage is very common. The kidneys are organs that normally correct mineral abnormalities in the body. But when a person’s mineral balance is constantly disturbed, they get damaged.
The brain suffers also from the moment bulimia starts.
The digestive system also gets affected badly. The stomach experience delays in empting its food content and people suffer from pains in the abdominal area, bloating, acid reflux, stomach ulcers and esophageal problems.
The bones become weak due to the development of low bones density and the bones can break from even minimal strain or pressure.
Skin looses its youthful look even at a relatively young age. Hair loss due to mineral and protein depletion is inevitable in the long term.
The endocrine glands eventually stop working properly and produce fewer hormones than the body needs: this makes a person age quickly and loose muscle tone.”
The list of problems caused by eating disorders is endless but the solutions are not simple. Eating disorders like chemical dependency and depression are not easy to treat and some people don’t respond at all. If we are to address diminishing the demand for organ transplants, though, we must take these diseases much more seriously. For more information on eating disorders click on the above links or the National Eating Disorders Association (NEDA) http://www.nationaleatingdisorders.org/
Please comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the 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 have saved or affected 50 lives.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
How Alcohol Can Kill Your Liver — And You March 4, 2009
Posted by Bob Aronson in Uncategorized.4 comments
The response to my blog; Should Alcoholics Get Liver Transplants, was overwhelming. I’ve been posting for a little over a year and no other blog has generated a response as heavy as this one. Because so many people were interested in the effect of alcohol on the liver, I decided to offer a brief expansion of the topic.
I think it is important to point out here that while I am a recovering alcoholic I am not anti-alcohol. There are, though, some instances where abstinence is absolutely necessary. Such is the case with liver disease.
According to the American Liver Foundation (ALF), (http://www.liverfoundation.org/education/info/alcohol/)
the liver breaks down alcohol so it can be eliminated from your body. If you consume more alcohol than the liver can process, the resulting imbalance can injure the liver by interfering with its normal breakdown of protein, fats, and carbohydrates.
The ALF says there are three kinds of liver disease related to alcohol consumption:
Fatty liver is marked by a build-up of fat cells in the liver. Usually there are no symptoms, although the liver may be enlarged and you may experience discomfort in your upper abdomen. Fatty liver occurs in almost all people who drink heavily. The condition will improve after you stop drinking.
Alcoholic hepatitis is an inflammation of the liver. Up to 35 percent of heavy drinkers develop alcoholic hepatitis. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain and tenderness, fever and jaundice. In its mild form, alcoholic hepatitis can last for years and will cause progressive liver damage. The damage may be reversible if you stop drinking. In its severe form, the disease may occur suddenly, after binge drinking, and it can quickly lead to life-threatening complications.
Alcoholic cirrhosis is the most serious type of alcohol-induced liver disease. Cirrhosis refers to the replacement of normal liver tissue with scar tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis, usually after 10 or more years of drinking. Symptoms of cirrhosis are similar to those of alcoholic hepatitis. The damage from cirrhosis is not reversible, and it is a life-threatening disease. Your condition may stabilize if you stop drinking.
Many heavy drinkers will progress from fatty liver to alcoholic hepatitis and finally to alcoholic cirrhosis, though the progression may vary from patient to patient. The risk of developing cirrhosis is particularly high for people who drink heavily and have another chronic liver disease such as viral hepatitis C.
The ALF makes it very clear that if you have any liver disease you must stop drinking, period! “Your doctor may suggest changes in your diet and certain vitamin supplements to help your liver recover from the alcohol-related damage. Medications may be needed to manage the complications caused by your liver damage. In advanced cases of alcoholic cirrhosis, the only treatment option may be a liver transplant. However, active alcoholics will usually not qualify as suitable organ recipients.”
Once people become aware of the dangers alcohol poses to the liver, the first question they ask is, “Can I drink at all? Is there a safe level of drinking?” Here’s ALF’s response:
“For most people, moderate drinking will not lead to alcohol-induced liver disease. Moderate drinking means no more than one drink a day for women and two drinks a day for men. (A standard drink is one 12-ounce beer, one 5-ounce glass of wine or one 1.5-ounce shot of distilled spirits.) However, for people with chronic liver disease, especially alcohol-induced liver disease, even small amounts of alcohol can make the liver disease worse. Patients with alcohol-induced liver disease and those with cirrhosis from any cause should stop using alcohol completely.
Women are more likely to be affected by alcohol-induced liver disease because women can be affected by smaller amounts of alcohol than men.”
Finally The American Liver Foundation says: “Serious complications from alcohol-induced liver disease typically occur after many years of heavy drinking. Once they do occur, the complications can be serious and life-threatening. They may include:
· Accumulation of fluid in the abdomen
· Bleeding from veins in the esophagus
· Enlarged spleen
· High blood pressure in the liver
· Changes in mental function, and coma
· Kidney failure
· Liver cancer”
The basic philosophy behind this blog is to advance organ donation but because there is such an organ shortage it is important, too, to protect our organs. Steps can be taken to avoid needing an organ transplant. Moderation of alcohol consumption is one of them.
Please comment here or email your comments to me at bob@baronson.org.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Should Alcoholics Get Liver Transplants? March 1, 2009
Posted by Bob Aronson in Alcohol.17 comments
This is a “think piece.” I’m hoping this blog will challenge your thinking and cause you to comment. I am taking no position on this issue, I am simply asking some very important questions.
Heavy drinking or alcoholism can severely damage our organs and the liver seems to be the most susceptible to such damage. So – if you were to ask the average person if alcoholics should be eligible for liver transplants the answer would likely be a resounding, “NO!”
As with most things in life, though, nothing is that simple. If transplant eligibility depended on us living healthy lifestyles then there would be no organ shortage because few people would qualify for the life-saving procedure.
According to a study, published in the April 25th edition of the Archives of Internal Medicine, led by Mathew J. Reeves who is the lead researcher and epidemiologist at Michigan State University, only 3% of Americans lead a healthy lifestyle. Reeves says a healthy lifestyle that includes not smoking, maintaining a healthy weight, regular exercise and a diet containing lots of fruits and vegetables lessens the risk of developing diabetes, cardiovascular disease and cancer. http://www.qualityeldercare.com/healthy.html
Back to the question on heavy drinking and liver transplants. Just what is heavy drinking? You may be surprised to learn that population-based surveys indicate that 68 percent of adult Americans drink at least one alcoholic beverage per month. About 10 percent consume more than two drinks per day, which is a commonly used definition of “heavy drinking”. Two drinks a day! http://www.enotalone.com/article/11240.html
Let’s ask the question again, “Should alcoholics or heavy drinkers be eligible for liver transplants?” Well, I am an alcoholic and had a heart transplant eighteen months ago. It Is likely that my alcoholism contributed to the disease that destroyed my original heart. I quit drinking in 1982 and have had no relapses but I am an alcoholic and always will be. Should I have been denied a transplant?
Should the obese person suffering from diabetes be denied treatment? Driving too fast is one of the top killers of American men, should the person with a speeding record be denied a transplant because they are likely to kill themselves? What about people who have anorexia, bulimia and other lifestyles that could be considered self destructive? Should prisoners be denied transplants even though they might someday be released? I fear that once we go down this road it is unlikely we would treat or transplant anyone.
I am not trying to justify transplanting livers into practicing alcoholics, but if you accept the American Medical Association (AMA) position that alcoholism is a disease, should the patient be punished because of it? Do we punish cancer patients because they have cancer? There is a school of thought based on limited research that suggests a liver-transplant recipient was statistically more likely to reject a new liver than to destroy it from continued drinking. The fact is that most transplant programs around the world require at least six months of alcohol abstinence before they will consider a transplant. But if two drinks a day is heavy drinking, the average person may be only a few drinks a week away from being a member of that group.
I began by saying that this is a “think piece.” I wrote it because I want to hear from you. Where do we draw the line on who is and who is not eligible for a transplant? The medical community has some solid guidelines, for example cocaine use in most cases will automatically eliminate a person from being considered for a transplant. The public however, as was evidenced in the Mickey Mantle case, may not agree with the medical professionals. What do you think? Being as there is a shortage of organs and thousands die each year because of it, should we more severely limit who is eligible for a transplant?
Please comment here or email your comments to me at bob@baronson.org.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Stem Cells Are Curing Horses — Are Humans Next? February 27, 2009
Posted by Bob Aronson in New Ideas.3 comments
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“Doctors might soon be able to re-grow injured muscles, tendons and bones without invasive surgery, simply by injecting a person’s own stem cells into the site of an injury. Veterinarians are already doing it with injured horses, and research into human applications is well under way.”
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That’s Marty Graham lead paragraph in the August 2008 issue of Wired Magazine’s story on adult stem cell research. http://www.wired.com/medtech/stemcells/news/2008/08/stemcell_regeneration . According to the story, “The National Institutes for Health (NIH) seem to think regenerating human muscle and bone using a person’s own adult stem cells is nearly ready for prime time.” The under-the-radar announcement to the NIH staff said it’s creating a bone marrow-stem cell transplant center within the NIH Clinical Research Center. Apparently while NIH sees some promise here, they didn’t want to attract attention and buried the announcement in other information.
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As you well know, there are two sides to every story. In this blog we’ll try to cover the up and downsides of this most important issue. Let’s start with the upside.
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The Wired story goes on to say, “Using adult stem cells — grown inside the body or in the lab — has become accepted in the veterinary community, and horses have benefited greatly. Researchers are working to bring those same benefits to humans, but there are still hurdles left to clear. The NIH project comes in part from what veterinarians have learned from injecting adult stem cells into valuable horses who’ve suffered injuries. In many cases, those horses’ careers were saved when the stem cells re-grew damaged tendons and ligaments.”
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Here is where it is imperative that I point out the fallibility of animal trials. Often what looks promising in animals simply doesn’t work in humans. You can be hopeful but keep that fact in mind. Medical science could tell a million stories of promising animal tests that fizzled in humans. Does that mean I’m not excited, absolutely not — but I am practical.
The Wired story continues with, “An emerging body of scientific studies from all over the world — including a cardiac study under way in Miami and a pediatric ACL (anterior cruciate ligament) study at the Harvard-affiliated Children’s Hospital of Boston — is showing that using a patient’s own stem cells can prompt the growth of new muscle, from the knee to the heart. And the precursor step, using platelet-rich plasma for injuries, is on the verge of becoming mainstream.
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Because researchers are using autologous cells — from the patient’s own body — the research is not controversial. No one has challenged the ethics or funding of adult stem cell research the way embryonic stem cell studies have been challenged. And because adult stem cells are native to the patient’s own body, the chances of a patient rejecting them are slim to none.”
Rocky Tuan, a Ph.D. and senior investigator in the Cartilage and Orthopedics branch of the NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (NIH) …sees a day when there will be no need for the dreaded surgery for torn anterior cruciate ligaments that sideline up to a quarter-million people in the United States and Canada every year.
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Obviously there are other benefits of adult stem cell therapy as I’ve written before. One might assume that if stem cells can regenerate tendons, they might also be able to repair hearts, lungs, kidneys and other human organs. But again, all of this could be nothing more than a pipe dream.
Stem cell treatment is not without risks, researchers say. The worst-case scenario is that the stem cells could cause cancer — or become cancerous themselves.
“You’re putting in cells that want to grow. That has to be under control or we can end up with cancer,” says Dr. Thomas Rando, an associate professor of neurology at Stanford University School of Medicine. Tuan also says that researchers don’t entirely trust stem cells and their ability to adapt and grow.
“There’s a nagging feeling that there’s a cancer stem cell, that when it’s agitated by exposure to carcinogens or radiation or something, it goes nuts, and that we can’t identify it from the other stem cells,” he says. “How do you find this bad boy and pull him out?”
“And there’s a nagging worry it’s the same cell. We only know these cells by what they’ve done, and by the time they’ve become cancer, it’s too late.”
The use of stem cells whether adult or embryonic is highly controversial and needs much more research. Let’s hope government, the medical community and the law will allow, even encourage it. .
Please comment in the space provided or email your comments to bob@baronson.org.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
What Minorities Need To Know About Organ Donation & Transplantation February 25, 2009
Posted by Bob Aronson in Organ Donation.4 comments
In the past my posts have been very general about the need for and benefit of organ donation. Today, though, I want to be more specific and discuss how minorities are affected by organ donation and transplantation.
There is some evidence to indicate a reluctance to donate by minorities is based on what they believe is unequal treatment – minorities giving up organs for rich non-minorities. The facts are clear – more members of the minority population will benefit if there is an increase in minority organ donation.
The U.S. Department of Health and Human Services Office of Minority health http://www.omhrc.gov/templates/content.aspx?ID=3123 published the following article on why it is Important for Minorities to Donate?
“The need for transplants is unusually high among some ethnic minorities. Some diseases of the kidney, heart, lung, pancreas, and liver that can lead to organ failure are found more frequently in ethnic minority populations than in the general population. For example, Native Americans are four times more likely than Whites to suffer from diabetes. African Americans, Asian and Pacific Islanders, and Hispanics are three times more likely than Whites to suffer from kidney disease. Many African Americans have high blood pressure (hypertension) which can lead to kidney failure. Some of these diseases are best treated through transplantation; others can only be treated through transplantation.
The rate of organ donation in minority communities does not keep pace with the number needing transplants. Although minorities donate in proportion to their share of the population, their need for transplants is much greater. African Americans, for example, are about 13 percent of the population, about 12 percent of donors, and about 23 percent of the kidney waiting list.
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Successful transplantation is often enhanced by matching of organs between members of the same racial and ethnic group. Generally, people are genetically more similar to people of their own ethnicity or race than to people of other races. Therefore, matches are more likely and more timely when donors and potential recipients are members of the same ethnic background.
Minority patients may have to wait longer for matched kidneys and therefore may be sicker at the time of transplant or die waiting. With more donated organs from minorities, finding a match will be quicker and the waiting time will be reduced.”
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MOTTEP (Minority Organ Tissue Transplant Education Program) http://www.nationalmottep.org/statistics.shtml is a treasure trove of information about this subject and they support the point that at least half the people on the national waiting list are minorities. “One disease, diabetes, is particularly notable: Diabetes is the 7th leading cause of death. Type 1 diabetes usually occurs within children. Type 2 diabetes is the most common form of diabetes, usually occurring after age 45. Complications include: blindness, kidney disease, amputations, heart attack and stroke.”
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Prevalence in African Americans:
· Approximately 2.3 million African Americans have diabetes. 1/3 of them do not know it.
· African Americans are 1.7 times more like to have diabetes, than Non-Latino Whites.
· 25% of African Americans between the ages of 65 and 74 have diabetes.
· 1 in 4 African American women over 55 years of age have diabetes.
Prevalence in Native Americans:
· Native Americans have the highest rates of diabetes in the world.
· Type 2 diabetes among Native Americans is 12.2% for those over 19 years of age.
· Diabetes has reached epidemic proportions among Native Americans. Complications from diabetes are major causes of death and health problems in most Native American populations.
· Amputations among Native Americans are 3-4 times higher than the general population.
Prevalence in Hispanics/Latinos:
· Type 2 diabetes is 2 times higher in Latinos than in Non-Latino Whites.
· 1.2 million of all Mexican Americans have diabetes.
· Nearly 16% of Cuban Americans in the U.S. between the ages of 45-74 have diabetes.
· Approximately 24% of Mexican Americans in U.S. and 26% of Puerto Ricans between the ages of 45-75 have diabetes.
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Finally, a word about the process of organ allocation — it is fair and non-discriminatory. What is unfair and very discriminatory is the fact that so many people don’t even get listed for an organ transplant because they can’t afford the cost. That is a national disgrace.
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Please comment in the space below or email your thoughts to me at bob@baronson.org
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Medicare Pays For Your Transplant But Not Anti-Rejection Drugs? February 22, 2009
Posted by Bob Aronson in Medicare.7 comments
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According to the American Society of Transplantation (AST) “Organ transplant recipients expect to and must take immunosuppressive medications for the lifetime of their transplanted organ. Thus, organ transplantation should be viewed as a treatment rather than a cure. Similar to many chronic diseases, the need for medical therapy goes on indefinitely. If immunosuppressive medications are discontinued for any significant length of time, rejection of the transplanted organ is inevitable in all but a small minority of patients.” http://www.a-s-t.org/index2.cfm?Section=public_policy&Sub1Section=key_position_statements&content=immunosuppressive_drug.cfm (AST is an international organization of transplant professionals dedicated to advancing the field of transplantation through the promotion of research, education, advocacy, and organ donation to improve patient care www.a-s-t.org )
As I understand current law, Medicare will pay the cost of a transplant for eligible patients, they will even pay for a second transplant if necessary but they will only pay for expensive anti-rejection drugs for thirty six months. There have been several attempts to change this situation but to date none have been successful.
In a special report on the issue of Medicare coverage of immunosuppressive drugs, AST also says,
“Extended coverage of immunosuppressive medications makes good fiscal sense, as well. Patients who stop their immunosuppressive medications run the risk of rejection of the transplanted organ. This usually leads to a prolonged hospitalization, at a cost of several thousand dollars a day. Thus, the amount of money necessary to cover the cost of immunosuppressive medications could be spent in a matter of days for one hospitalization related to rejection. If a kidney transplant recipient’s kidney fails, a return to thrice weekly dialysis sessions is necessary, at an expense above and beyond the cost of immunosuppressive medications for the same time period. Loss of other transplanted organs ultimately leads to death or the need for another organ transplant, at a cost of hundreds of thousands of dollars.” The AST Executive Committee approved this report on April 26, 2006. They summarize their position in the following manner:
· Extension of coverage for immunosuppressive medications for the lifetime of the transplanted organ
· Access to insurance coverage for the lifetime of the transplanted organ
“AST supports initiatives that ensure the coverage of immunosuppressive medications for the lifetime of a transplanted organ, regardless of age and ability to pay. Ultimately, this will lead to improved transplant success rates and the greater ability of transplant recipients to return to a normal life.”
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Calling the current coverage policy “one of the great paradoxes in federal health policies,” US Representatives Dave Camp (R-MI) and Ron Kind (D-WI) introduced HR 3282 – the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2007 – despite their good intentions, however, the bill still has not passed congress.
If the Medicare policy I have described is bothersome to you, then write to your members of congress, the U.S. Senate, The U.S. Department of Health and Human Services and President Obama.
Please comment in the space below or email your thoughts to me at bob@baronson.org
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
More On Cellular Memory. New Heart, New Personality, Too? February 17, 2009
Posted by Bob Aronson in Cellular Memory.4 comments
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I have been writing this blog for over a year, and it is with great interest that I watch which of my posts gets the most attention. Cellular Memory – Organ Recipients with Characteristics of Donors is far and away the most popular of all the columns I have written by a factor of over two to one. Why is that? Why are so many people so interested in the possibility of adopting the characteristics of a total stranger? I had a heart transplant eighteen months ago and have adopted no new characteristics but apparently that’s not true of all organ recipients. Heart transplant patients lead the way in saying they have changed — taken on some of the characteristics of their donors and some of their stories are compelling.
I am not here to promote nor deny the existence of cellular memory I just find the topic fascinating especially because so many of my readers do. Not long ago The Discovery Health Channel aired a program titled “Transplanting Memories.” http://dsc.discovery.com/ In the show experts explained why they believe in the concept. Georgetown University Professor, Dr. Candace Pert, said she believes the mind is not just in the brain, but also exists throughout the body. “The mind and body communicate with each other through chemicals known as peptides,” she said. “These peptides are found in the brain as well as in the stomach, muscles and all of our major organs. I believe that memory can be accessed anywhere in the peptide/receptor network. For instance, a memory associated with food may be linked to the pancreas or liver and such associations can be transplanted from one person to another.”
Another expert, German neurologist, Leopold Auerbach, discovered over a century ago that a complex network of nerve cells, like those of the human brain, exist in the intestines. And — Professor Wolfgang Prinz, of the Max Planck Institute for Psychological Research, Munich, discussed the “second brain” in Geo, a German science magazine. Prinz said the digestive track is made up of a knot of about 100 billion brain nerve cells, more than found in the spinal cord. The article suggested the cells may save information on physical reactions to mental processes and give out signals to influence later decisions. It may also be involved in emotional reactions to events.
Perhaps all of this explains the many stories on the internet of transplant patients taking on the personalities of their donors.
If you really want to explore this phenomenon I strongly encourage you to read Knowing By Heart: Cellular Memory in Heart Transplants by Kate Ruth Linton in the MONTGOMERY COLLEGE STUDENT JOURNAL OF SCIENCE & MATHEMATICS
Volume 2 September 2003, http://www.montgomerycollege.edu/Departments/StudentJournal/volume2/kate.pdf.
Ms. Linton writes: “On May 29, 1988, a woman named Claire Sylvia received the heart of an 18-year-old
male who had been killed in a motorcycle accident. Soon after the operation, Sylvia
noticed some distinct changes in her attitudes, habits, and tastes. She found herself acting
more masculine, strutting down the street (which, being a dancer, was not her usual
manner of walking). She began craving foods, such as green peppers and beer, which she
had always disliked before. Sylvia even began having recurring dreams about a mystery
man named Tim L., who she had a feeling was her donor.
As it turns out, he was. Upon meeting the “family of her heart” as she put it, Sylvia
discovered that her donor’s name was, in fact, Tim L., and that all the changes she had
been experiencing in her attitudes, tastes, and habits closely mirrored that of Tim’s.”
Several transplant surgeons have contributed to a theory for cellular memory essentially
based on psychological and metaphysical conditions, which Dr. Paul Pearsall has pieced
together. Pearsall is a psychoneuroimmunologist, or a licensed psychologist who studies
the relationship between the brain, immune system, and an individual’s life experiences. Pearsall calls this theory the “Lowered Recall Threshold” Basically, it suggests that the immunosuppressive drugs that transplant recipients must take are what bring about associations to donor experiences in recipients. Immunosuppressive drugs minimize the chances of rejection of the new, foreign heart by suppressing the recipient’s immune system. Scientists believe these drugs could also possibly act as psychotropic, meaning “acting on the mind.”
There are many interesting passages in this treatise but you should read it for yourself — in its entirety. If nothing else you will find it very, very thought provoking. There’s a lot of information on this subject on the internet. You might also be interested in: http://medhum.blogspot.com/2006/06/mindshock-transplanting-memories.html
Please comment in the space below or email your thoughts to me at Jaxbob@gmail.com.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Brits Say Stem Cells May Make Heart Transplants Unnecessary February 15, 2009
Posted by Bob Aronson in New Ideas.4 comments
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“Heart disease patients in Britain could soon take part in a revolutionary stem cell surgery trial that could change the nature of heart surgery and ultimately end the need for transplants.” http://www.telegraph.co.uk/health/healthnews/4569971/Trials-for-revolutionary-stem-cell-surgery-in-UK-within-a-year.html That headline comes on the heels of President Obama’s promise to remove the ban on Government backed embryonic stem cell research here in the U.S.
The story by Caroline Gammell in the British publication, The Telegraph, seems to offer more than promise. If one could use their own (adult) stem cells to repair damaged organs it would be one of the greatest medical breakthroughs of all time. No longer would there be a need for organ donors and sometimes risky transplant surgery. Also true is the fact that because a patient would use his or her own stem cells there would be no danger of rejection and therefore no need to take often toxic anti-rejection drugs that transplant patients must take for the rest of their lives. To quote from the story; “It is believed that British patents could take the pioneering treatment, in which a patient’s own cells are extracted and grown in a laboratory, in as little as a year. Scientists have worked out a technique where human bone marrow cells are turned into human heart stem cells and then injected into the heart. Laboratory grown heart stem cells were initially extensively tested on animals and trials on humans in Europe are due to start later this month (February 2009). “
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Again, quoting from the story, “Professor Sian Harding, of Imperial College London, said being able to convert bone marrow stem cells into heart stem cell was a “big leap forward” in finding an “effective” treatment for heart failure.
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“Placing heart stem cells into the heart to repair has a very good chance of working because the stem cells are the patient’s own there are no problems with rejection,” she said. Prof Harding is working on turning embryo stem cells into heart stem cells but said her research was “still years away” from being used in patients.” The most recent process,” according to the Telegraph, “was developed at the Mayo Clinic research centre in Minnesota”
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One must be careful in reporting this kind of story because the research is still in the stage of being tested on laboratory animals and no matter how promising it is with animals, history tells us that the effect on humans may be totally different.
We’ll watch this story carefully and report any new information. In the meantime I urge you to “Google alert” this story as well and let us know what you find.
My only question here is, did the Telegraph make too much of the story. Does it offer premature and perhaps false hope to the thousands of people who are waiting for new organs and who could die waiting? Please read the full story by clicking on the URL listed above, and comment here or email me at jaxbob@gmail.com.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
Illegal U.S. Organ Trafficking Not An Urban Legend? February 11, 2009
Posted by Bob Aronson in Illegal Organ Trafficking.2 comments
A recent issue of Newsweek Magazine featured a story about organ trafficking and the possibility of an illegal organ procurement/transplantation market in the United States. To say the story is disturbing is putting it mildly. The article, Not Just Urban Legend, http://www.newsweek.com/id/178873 was written by Jeneen Interlandi and draws heavily on information provided by Nancy Scheper-Hughes a PHD anthropologist from the University of California at Berkley. Scheper-Hughes spent more than a decade tracking the illegal sale of human organs around the world.
While the hospital name is not mentioned, Scheper-Hughes refers often to a big Philadelphia hospital that she believes, “Has been transplanting black-market kidneys from residents of the world’s most impoverished slums into the failing bodies of wealthy dialysis patients from Israel, Europe and the United States.” She also indicates that the Philadelphia hospital is not alone among U.S. Hospitals that are involved in the illegal trafficking of organs.
The Berkley anthropologist claims she has compiled sixty pages of evidence from organ buyers, sellers and brokers in virtually every part of the world. According to the Newsweek story, the World Health Organization (WHO) estimates that one fifth of the 70,000 kidneys transplanted worldwide very year come from the black market. The story claims that while prices vary from country to country a Kidney can be bought in the United States for $30,000.
The Newsweek story goes on to say, “Scheper-Hughes’s evidence, which is largely anecdotal and comes in part from interviews with known criminals, has not convinced U.S. State department officials otherwise. “It would be impossible to successfully conceal a clandestine organ-trafficking ring,” Todd Leventhal, the department’s countermisinformation officer, wrote in a 2004 report, adding that stories like the ones Scheper-Hughes tells are “irresponsible and totally unsubstantiated.” In recent years, however, the WHO, Human Rights Watch and many transplant surgeons have broken with that view and acknowledged organ trafficking as a real problem.”
Obviously I cannot vouch for the accuracy of Scheper-Hughes’ information. I can testify, though, about my own experience. My Blog on www.bobsnewheart.wordpress.com has covered numerous subjects. One was titled, “Would You Sell a Kidney for $47 K U.S.?” The blog quoted an Australian physician who thought that price to be a fair one. It in no way encouraged or even subtly suggested that people should sell their kidneys. Since writing the blog I have received at least three dozen comments and/or emails from people offering to sell their kidneys. The reasons given were usually quite simple and straightforward – they needed the money. As a result I have no trouble believing that many Americans would sell a kidney to anyone that could come up with the price. I have no evidence to indicate that the transplants are done here in the United States.
I am disturbed, though, that such a practice could go on here and that there is even the remotest possibility that U.S. Licensed transplant surgeons would be involved in this illegal practice. Perhaps it is time to do a better job of policing the situation or, exploring new ways other than the altruistic approach to obtaining organs.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php
