Advocacy Follow-Up Living Donor Risks Living Kidney Donor OPTN Registry

Letter to Editor: Where’s the Care for Living Donors?

[note: is it sad that I’m more impressed/surprised/pleased a newspaper actually published this than I am about what was said?]

Letter to the editor: ‘Heroic’ organ donors need aftercare

It is gratifying that Gary Rutter received a long-awaited kidney and that Hallie Twomey has found solace in donating one of hers (“Six linked patients, three saved lives in series of kidney transplants,” Jan. 17). The marvels of modern medicine and the generosity of the human heart are breathtaking.

However, while the article cited possible outcomes for recipients, there was no reference to outcomes for donors.

In fact, the United Network for Organ Sharing/Organ Procurement Transplant Network – a private corporation that has managed the nation’s transplantation system since 1986 and collects a fee for every recipient and living donor – has fiercely resisted the establishment of an independent registry of living organ donors through which long-term outcomes could be tracked.

According to figures cited in your article – 16,812 kidney transplants last year at an average cost of $262,900 – kidney transplantation is a multibillion-dollar industry. Surely that staggering sum can finance long-term monitoring and health care for living donors, who will experience reduced kidney function.

Hallie Twomey deserves no less for her heroic act. Your reporter wrote that “being tired all the time” a month after surgery is “a lasting effect of the anesthesia.”

Actually, her fatigue might be caused by her remaining kidney hyperfiltering to compensate for the loss of its partner. I hope Ms. Twomey has had an independent donor advocate to guide and support her through this process.

Nora Irvine

South Berwick

Advocacy Deceased Organ Donation OPTN

Learn About Joining an OPTN/UNOS Committee

I encourage anyone interested in living donor or transplant-related issues to apply to be on an OPTN committee. To learn more about what it means to be an OPTN committee member, here’s the official orientation video and relevant documents:

Full disclosure, I haven’t watched video, but I have perused the pdfs. Notice that ‘living donor safety’ is the fifth out of five goals, and the other four are all about obtaining transplants for recipients.

If you refer to page 14 of the second pdf “presentation handout”, you’ll see an OPTN main goal graphic, depicting how the five goals (those in the first pdf I already mentioned) all further OPTN’s main objective:


Longer Lives For Patients With Organ Failure.


How, exactly, does “promote safety for living donors” fit into that? Well, it doesn’t. And that’s because OPTN was established to create a national system of deceased organ procurement and allocation. It was never meant to deal with living donors and living donation issues. Walter Graham, the Executive Director of UNOS (OPTN’s contractor), asked the Secretary of Health for authority to develop living donation policy so UNOS could profit from living donation in the same way it does from deceased donors. <- which happened in 2006.

The graph at the bottom of page 15 demonstrates clearly why living donors so often lose out – we only garner about 12% of OPTN’s attention and resources. Everything else serves recipients’ needs.


So, I strongly encourage everyone to get involved. When OPTN asks for public comment on proposed policy, give it to them. When you’re able to attend a regional meeting, do so. When a committee spot opens, apply. When you have questions concerning policy and law, don’t be afraid to ask. Contact either/both the OPTN president and/or the HRSA liaison listed on OPTN’s Board of Directors page. Remember: OPTN is a publicly funded entity. It has to answer to us.