Monday, May 24, 2010

Compensation for living organ donation! status quo no more but...

I talked earlier this year about “Compensation for living donation”. The comments I got show how controversial this subject is. I was happy to see that ATC this year opened the debate on this crucial matter because keeping the status quo means more people dying on dialysis. I will try to summarize the discussion and you can refer to the ATC website for more details.

Dr. Ghahramani reported on the Iranian system. Although, it’s obviously not the ideal system, there are some lessons to learn from it:
  1. The system eliminated the waiting list so more lives were saved.
  2. He claims that potential donors were evaluated thoroughly by nephrologists and the transplant team for clearance.
  3. Patients paid 3/4 of the amount of the compensation that is set by the transplant community. This amount is revised every year depending on inflation. The government paid 1/4. Charity organizations took over in cases of patients of low socioeconomic status.
  4. The donor was offered free follow up medical care by the government.
From the data shown, LRD was minimal in this system, most likely because relatives lost the incentives to donate. DCD kidneys were also minimal because “buying a kidney” would limit the time on dialysis. A recent change to the system was made and every ESRD patient had to stay on the deceased transplant list for at least 6 months before looking for a living donor. It seems that LRD and DCD transplants increased after the implementation of this new policy probably because relatives now had an incentive to donate so they can limit the time on dialysis for their loved ones. Dr. Padilla talked about the failed system for organ compensation in the Philippines. She felt this was mainly due to the government's failure to regulate the system.

Dr. Danovitch certainly made excellent comments on how "Commercial living donation displaces non-commercial living unrelated donation and comes at the expense of living related donation". This was obvious in the Iranian and the Israeli experience, although one may think that enrollment of the ESRD patients on the deceased list before they are allowed to look for a living donor could potentially give incentives to friends and family to donate. I think the most important comment he made is about how “the rest of the world might follow suit if the U.S. allowed incentivized organ donation”. Those parts of the world may not have the regulation ability as the US government, causing what Dr. Danovitch called "blowback" in a global competition of incentives. On the other hand, Dr. Danovitch talked about the disincentives for people to donate. He showed data that more people of high socioeconomic status are donating as LURD. I can’t believe that people of low socioeconomic status have less good intentions than rich people but simply they couldn't afford to do this act of love to friends or beloved ones because of the disincentives I talked about in the previous blog.

Dr. Matas offered an interesting potential model in the US including “national criteria for selecting donors under an incentivized plan. The organ procurement organization could set up screening interviews, including medical and psychological evaluation and panel reviews involving the surgeons, other transplant physicians, transplant coordinators, social workers and patient advocates. If accepted, a computer algorithm would determine the allocation of the kidney to a center with an appropriately matched candidate at the top of a wait list”.

An interesting comment during this session came from Dr. David Sachs who saw that both Dr. Danovitch and Dr. Matas were talking about the same thing and he felt that eliminating disincentives or compensating donation could be the same thing and we should be working together to eliminate the waiting list rather that fighting.

Those disincentives could be eliminated by indirect compensation. I think it’s about time to start discussing this issue with an open mind and no prejudice, knowing that most people including myself have controversial feelings and need more enlightenment from other people.

I would appreciate your comments and voting.

1 comment:

Cristy at Living Donor 101 said...

This article, like most in favor of donor compensation, operates under some not insignificant misconceptions.

1. Examining kidney sales in other countries, including Iran, India, Pakistan and the Phillipines will show bad short and long-term outcomes for the donors/vendors. (refer to published literature)

2. Living donation is NOT safe, and a kidney is NOT a 'spare'. In the US, according to the most conservative statistics available, 1 to 2 living donors die every year as a direct result of the procedure.

In addition, many others suffer from complications such as permanent nerve damage, pancreatitis, intestinal blockage, bleeding, testicular swelling and sensitivity, hernia, chronic pain, chylous ascites (lymph leakage), adrenal dysfunction, etc.

Living kidney donors are at a higher, lifelong risk of cardiac death and disease, hypertension and kidney failure. Since 1993, more than 200 LKD have registered on the waitlist in need of their own transplant.

3. The process of Informed Consent varies across surgeons and hospitals, and is not standardized. Two brothers (one donor, one recipient) are currently suing UPMC for lack of Informed Consent.


4. Many living donors suffer depression, anxiety, anger and PTSD, yet not one transplant center in the US offers any aftercare or support services.

4. There is NO comprehensive, long-term data on living donors' health and well-being. In fact, there is NO federal law giving any agency or dept oversight or purview over living donation, creating a Wild West mentality throughout the transplant industry. (UNOS policies are voluntary and cannot be enforced)

5. Since 2000, transplant centers have been required to submit one to two year followup forms on their living donors. In the latest 'organ utilization' report (1998-2008), 30% of 2006 were incomplete and some transplant ctrs reported ALL LDs as 'lost to follow-up', meaning they made no effort at all.


6. Most importantly, transplants are not cures. The vast majority of recipients will need multiple transplants to achieve a normal lifespan. Exactly how many living donors lives is one recipient worth? Two, four?

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