By Anna Bennett
There is a HUGE disservice being done by the advocacy world to those in CKD5. Why is organ donation always conflated with an Organ Market? Paying an altruistic donor's medical bills is expected, it should be a given. Ensuring that a donor is not discriminated in future medical care, that too should be a given. Missed work/recovery - well, that is a debate. I am ok with it, as long as it does not enrich the donor. The disservice is done by promoting travesties such as the Iranian Paid Donor System as optimal (as Dr. Tabarrock did). It is that kind of example that just detracts from what can be done to help. Citing a country with KNOWN human rights abuse removes all credibility and made Dr. Tabarrock an easy target for the final speaker of the evening, Dr. Nancy Scheper-Hughes, Ph.D., Chancellor’s Professor in Medical Anthropology, Head, Doctoral Program in Medical Anthropology, Critical Studies in Medicine, Science and the Body, University of California at Berkeley; Director, Organs Watch.
My first reaction, WOW! It was fortuitous that the she spoke right after Dr. Tabarrock, she easily refuted his citation of Iran being a good example of an Organ Market. She has actually had graduate students working in Iran, unbiased people who have seen the atrocities and abuse first hand. This woman brought it all into perspective for me. Her research is on Organ Trafficking.
Dr. Scheper-Hughes is well versed in CKD and the unique entitlement that guarantees that we in the United States with CKD5 receive treatment. Entitlement is the key word here. If we paid into the system or are a child, we are guaranteed renal replacement in the form of dialysis or transplant and the government will pay for it. The Medicare ESRD Entitlement is a unique program, in this regard, Americans with CKD5 are very, very lucky.
Dr. Scheper-Hughes talked a bit about the history of the Medicare entitlement and the original Seattle "Life or Death" Committees. Dr. Scheper-Hughes spoke for a long time, and many in the audience were uncomfortable. It is tough to sit in the pristine Paley Center Screening Room, just off Fifth Ave in NYC, and be faced with the realities of Organ Trafficking. Those reception canapes paid for by big pharma don't sit too well when Dr. Scheper-Hughes points out that trafficking exists here in NYC - all over the USA actually - she gave us places and names, and slides of the traffickers.
Currently, one Trafficking Ring is flying in Moldovian Peasants to the USA to be paid donors. The National Organ Transplant Act (NOTA) is the law that covers against paid donation has been on the books since 1984 (and then amended in 2008). As of today there have been no prosecutions citing the act. District attorneys are not enforcing it. Dr. Scheper-Hughes has been working with the FBI and various embassies, trying to stop this exploitative practice, and so far, nothing has come of it. When she spoke to the Moldavian Embassy, their reply was (I am paraphrasing) "So, that's why so many were applying for visas".
I hope that we'll be hearing more from Dr. Scheper-Hughes, we need to be reminded that desperation can lead to exploitation. There are better answers out there than buying a kidney on the organ black market. Nephronline noted in their quote of the day (which, if memory serves, was said during the Q&A - when Dr. Scheper-Hughes was trying to see a solution to the desperation):
"Due to the huge shortage in available organs, a sense of desperation has set in, driving the current practice of organ trafficking. There are penalties for buying, selling and brokering the sale of organs in this country, but still it goes on, often with an attitude of 'don't ask, don't tell.' I believe that if the laws are not going to be followed, then the laws should change. First, though, a controlled study must take place, in an ethical manner, with a sample of volunteer organ donors being compensated appropriately."
—Nancy Scheper-Hughes, director of Organs Watch and an expert on organ smuggling at the Kidney & Urology Foundation of America transplant conference.
On a personal note: I want to thank Karol Franks (OKarol) over at IHD for posting about this program (that is how I found out about it). Karol is an AMAZING woman, and her dedication to those with CKD is a shining example for all of us. I want to thank KUFA (the Kidney and Urology Foundation of America) for putting on the program. I wish they did more for those 80% of people with CKD5 who are on dialysis with no transplant in their future. But I see that there is high drama in transplant. I'll admit, it is shocking to see the scars of the Brazilian mental patients who were kidney donors. What I'd like to see is some of that passion go into promoting HDHD. I'd like to see more examples like Bill, Peter and Harvey et al, showing that life does not stop with dialysis.