Sigrid Fry-Revere, Founder and President of the Center for Ethical Solutions, discusses issues around organ transplantation policy and provides an inspiring and cost-effective living organ donation solution from Iran. We learned more about her work and vision.
What motivated you to speak at TEDMED?
I was terrified of the thought of speaking before so many people, but I knew my research in Iran and experience as a rejected living organ donor could save lives.
What impact do you hope the talk will have?
We need to rethink conventional paradigms used for donor kidney shortage. Increasing the proportion of cadaveric kidney donation, while helpful, will never be enough. And, as it relates to living donation, it is not simply a question of whether we allow only altruistic (non-compensated) donations or whether we allow a market. Neither a market system nor pure altruism are necessarily the answer, however compensating living organ donors so that they don’t suffer financial consequences for their altruism is certainly a start. Assisting donors with meeting their expenses, or expressing gratitude with gifts or benefits does not diminish their altruism. Unfortunately, policies that limit efforts to to ensure fiscal health of donors makes taking part in the act of helping friends and family who need transplants a privilege only the wealthy can afford.
What’s next for you?
I want to to spur discussion and change, and to this end, I founded two organizations. Stop Organ Trafficking Now! is lobbying Congress to pay more attention to living organ donation and the rights and needs of those living organ donors. Making living organ donation easier means fewer Americans will brave black market organ trafficking channels to try to save themselves or their loved ones. I also co-founded a charity based on my experiences in Iran. The American Living Organ Donor Fund (ALODF) is a living organ donor support organization that provides information, an online donor support group, and financial assistance with non-medical donation related expenses. ALODF exists to support all kinds of living organ donors – kidney, liver, bone marrow and others – but to date only kidney donors have applied. My research has given me a good idea of what needs are alleviated for Iranian living donors in order to to ease the burden of donation. We lack such data for other countries, including our own, so I intend for the ALODF’s efforts to include learning more about the needs of American living organ donors. The American Living Organ Donor Fund has already made more transplants possible for U.S. citizens in its two and a half month existence than some government funded Organ Procurement Organizations (OPOs) average per month. How is this possible? For one, OPOs focus almost entirely on retrieving organs from deceased donors. Cadaveric organ retrieval is expensive and far less productive than live organ transplants. OPOs receive on average $50,000 per kidney retrieval, and as many as 20% of those organs are not viable for transplant. In the last two and a half months, the ALODF has helped 30 Americans receive transplants by helping their living organ donors with out-of-pocket expenses, spending on average $2,500 per donor. If you do the math, that is twenty times less per transplant than what an OPO receives per transplant.
Any corrections to your talk since you gave it?
In both my book and my TEDMED talk I mention that the Fars Province in Iran (an area surrounding the city of Shiraz) doesn’t allow compensating donors beyond the federal government contribution given to all living donors to help cover expenses. Dr. Malek-Hosseini, the head of the transplant program in Shiraz, Iran, notified me in November 2014 that his province no longer allows any unrelated donors. He believes this will help prevent the illegal payments or black market sales or kidneys that were occurring in his province. Note, no other region in Iran that I know of has banned paying donors or placed such restrictions on relatedness of donors by blood, adoption, or marriage. However it is important to note that throughout Iran, it is illegal for foreigners to either buy organs or sell organs to Iranian citizens.