Links

There are many organizations and websites that ‘facilitate’ donor and recipient matches. They operate outside of UNOS/OPTN purview, meaning they are held to no legal or ethical standards. Many of these sites charge a fee, which is contrary to UAGA and NOTA. Non-profit does not mean ‘no paycheck’. Their main priority is finding organs for recipients; they do not care about the short or long term well-being of living donors.

Non-profit organizations in the U.S. must make their payrolls available to the public. To find out what public policy officials (or other individuals) make, see Guidestar.org

Living Donor Specific:

Living Donors Are People Too: Covers topics, research, news and issues relevant to the living organ donor community. Also includes the Living Donor Experience Survey.

Laurie’s story of her living liver donation to her sister. Not the warm fuzzy stories you see in your local papers.  

Wayne’s liver donation to his mother. (click the link to read the .pdf). Note: Wayne is incorrect in stating long-term living donor data exists. It does not.

Chris’ story of her living kidney donation to her nephew. Her rampant physical and psychological complications resulting in infertility and a non-functioning graft for the recipient. What this page doesn’t say is that her recipient’s insurance stopped paying for her medical bills and the Cleveland Clinic Foundation turned them over to Collections.

Dr. Vicky Young‘s essay on her living kidney donor experience.

How Lahey Killed Paul Hawks, a liver donor. Lahey’s public relations department “protects the brand”.

Living Donors Online: Information on living donation of organs, tissues and bone marrow, plus message boards.

Bereaved by Living Donation: A yahoo group founded by Rebecca, a living kidney donor whose recipient died shortly afterward.

The Risks of Living Kidney Donation: A non-related (aka “altruistic”) kidney donor at the University of Minnesota Medical Center tells his/her story.

Public Policy Departments or Organizations: (also see Public Policy Organizations)

Centers for Medicaid & Medicare Services: Segment of DHHS that handles Medicare & Medicare, including conditions transplant centers meet in order to receive Medicare & Medicaid patients and reimbursement.

The Joint Commission Accreditation Health Organizations (JCAHO): Accredits and certifies U.S. health organizations, certifying quality and adherence to certain performance standards.

American Society of Transplant Surgeons: Non-profit consisting of over 1100 surgeons, physicians, scientists and other health professionals.

Global Observatory on Donation and Transplantation: In collaboration with the  World Health Organization, to promote the ethics of donation, ensure oversight and increase access to transplantation.

Misc.

OPTN has a great transplant-related glossary.

Health News Review has a page on “Tips for Understanding Studies“. It’s geared toward journalists who write on health related issues, but it contains information we could all use.

The Organ King” by Brigid McMenamin, Forbes Magazine. (regarding then-Executive Director Walter Graham and UNOS)

Coalition for Organ-Failure Solutions: A global nonprofit organization dedicated to combating organ trafficking and the exploitation of the poor and vulnerable as a source of organ and tissue supply. 

Medicare Provider Charge Data: Hospital specific charges for the 100 most frequently billed discharges for over 2000 U.S. hospitals. Shows wide variation in charges.

The Effect of Churnalism on Health Care News and the Public by Gary Schwitzer. How reporters simply repackage press releases and pass them off as news.

Additional Reading:

Consensus Report of the Living Donor Task Force, January 2009.

The Dark Side of Organ Donation by Laura Meckler (2009)

2007 GAO report on Organ Transplant Programs’ Oversight by OPTN and CMS (hint: not good).

Declaration of Istanbul: Global consortium regarding organ trafficking and transplant tourism in May 2008. Much to say about how living donors should be treated, including numerous items the U.S. itself isn’t doing.

We Need a Registry of Living Kidney Donors: essay from Bioethics Forum after two studies revealed some living kidney donors end up on the transplant waiting list themselves.

Living Donor: Process, Outcomes & Ethical Questions. Staff discussion paper for September 2006 meeting for the President’s Council on Bioethics.  Transcript of the meeting.

Adult to Adult Living Liver Transplantation study, compiling data on  the outcomes of all living donor transplants across the U.S. Results available in .pdf here.

Organ Donation Improvement and Recovery Act of 2004. A discussion of ODRIA – what it changed, what it means – and not the painful legalese of the law itself.

Reassessing Living-Donor Liver Transplantation: from 2003. Discussion of living donor deaths and proposed changes in procedures.  [note: two living liver donors died between May and August of 2010 in the US]

Consensus Statement of the Amsterdam Forum on the Care of the Live Kidney  Donor. From 2004, a gathering of over 100 experts from over 40 countries. The objective was to develop an international standard of care for the live kidney donor.

Death of liver donor Mike Hurewitz, as reported by Daily Press, and index of articles in The New York Times regarding Mike Hurewitz.

Last Updated: December 15, 2015.