Dispatches of solace and hope: Q&A with Sarah Gray

On Hope and Solace: Sarah Gray

Sarah Gray

In her TEDMED talk, Sarah Gray, director of communications for the American Association of Tissue Banks (AATB), shared her journey to find meaning in her most tragic loss by learning how to donate the organs of her newborn son to advance scientific research. We asked Sarah to tell us more about her outreach work.

TEDMED: Could you share any exciting stories you’ve encountered in your work?

SARAH: On the research front, I’m pleased to share that Eversight, one of the largest consortiums of eye banks in the USA, recently launched a new program called Hope and Healing that is designed to help eye donor families meet the researchers who received their loved one’s tissue.

In a story similar to my own, an especially touching family tale is about Amalya, a baby who died of anencephaly who donated to a variety of studies around the USA. His parents were able to meet some of the researchers who received his donations and learn about the impact of his donation.

TEDMED: In your TEDMED talk, you encouraged the audience to contact you with any stories of their own about tissue donation. With over a million views of your talk, have you connected with any viewers with powerful stories of tissue, organ or marrow donation?

SARAH: Absolutely! I have received emails from amazing people from all over the world, from New Zealand and South Africa to Scotland, Spain and France. Some just wanted to say that they liked the talk, some shared stories of loss, some told me that I helped them see a new perspective, and some asked for practical advice about donation and obtaining research samples. One researcher contacted me to find out where he might be able to access different types of tissue for a study on the genetic causes of certain diseases and I am glad I was able to help him.

I was really touched by every person who reached out, and a few of the emails in particular. Two different people from two different countries told me they had terminal cancer and wanted to know where they might be able to donate their tissue when they pass away so that the study of their tissue might help others. Reading these emails was so moving and I am honored I was able to help them.


Learn more about Sarah’s journey in her powerful memoir, A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science. 

A better organ-ized kidney solution: Q&A with Sigrid Fry-Revere

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.

Sigrid Fry-Revere discusses living kidney donation solutions at TEDMED 2014 [Photo: Sandy Huffaker for TEDMED]

Sigrid Fry-Revere discusses living kidney donation solutions at TEDMED 2014 [Photo: Sandy Huffaker for TEDMED]

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.