Advocacy Informed Consent Living Donor Misinformation Living Kidney Donor

Open Letter to Luis Fabregas

Last month, Luis Fabregas from the Pittsburgh Tribune penned this article about the implementation of OPTN’s newest living donor evaluation requirements. I sent Mr. Fabregas my thoughts on his article, but he declined to respond. Here’s what I wrote:



I’ve been following your articles on transplant related issues for a number of years. While I appreciate everything you’ve done to bring attention to these issues, I feel this last article really soft-pedaled the situation.

OPTN (or UNOS, if you’d like) has had purview over living donor policy since 2005, a responsibility Walter Graham, then UNOS Executive Director, requested. In 2007, the Living Donor Committee proposed a comprehensive living donor evaluation and follow-up policy based on recommendations from the American Society of Transplantation, a review of published literature, and a focus survey of the largest transplant centers. This policy was vehemently rejected by OPTN’s membership (aka transplant centers and others who financially benefit from transplants). For 60 years, the US had *no* standards of living donor evaluation, selection, treatment or follow-up.

The Secretary of Health has required one year of follow-up on all living donors since 2000. OPTN expanded that another year in 2006. Yet transplant centers have willfully not complied with this mandate, and neither CMS, HRSA nor UNOS have held anyone responsible. More than 1/3 of living donors are reported “lost” to follow-up after one year, and OPTN admits that in most cases, no attempt has been made by the transplant center to make contact. <- But recipients are tracked for ten, in a government-funded registry.

It is only because HRSA pressured OPTN for years that OPTN was forced to revisit the issue. They created a committee of transplant-related organizations to produce a consensus document to be used as the basis of the policy (BTW, the consensus document admitted that there is no clinical evidence on the ‘best’ way to evaluate a potential living donor). Yet the final result was a policy that removed any concrete teeth the consensus document contained, and (again) neglected to provide any consequence for noncompliance. This policy is so vague, it actually requires transplant centers to inform rejected potential living donors that they can be evaluated at a different center and accepted, because the other center might have different selection criteria. This is not, in my opinion, the definition of “thorough”.

UNOS/OPTN’s follow-up forms do not include information on mental health. Yet other studies have indicated that 20-30% of living donors experience depression, anxiety, grief, anger, and/or PTSD. Transplant centers are not required, and therefore do not, provide aftercare or support services. People seeking weight loss surgery are given more and longer psychological support than living donors.

Questions such as “Do you regret donating?” or “Would you donate again?” are biased. The vast majority of people donate to people they are emotionally related to. No matter how detrimental the outcome, how many would say they regret trying to help someone they love? More importantly, a lack of regret does not negate the transplant industry’s responsibility to treat living donors with the same care and respect they provide to recipients. And weight loss surgery patients.

Again, I appreciate everything you do. But as a living donor who was harmed, and as a living donor activist that has dealt with countless other wounded living donors, I encourage you to see through OPTN’s pro-donation message.