This isn’t news to me, or to many other living donors, but apparently it is to LA Times’ David Lazarus, and he writes about it here.
I sent an email to Mr. Lazarus after reading his column, as follows:
First of all, thank you for giving attention to this matter. The inability to procure health or life insurance post-donation is a very real problem that the regulatory agencies and transplant organizations are aware of but do nothing about. While insurance companies may hedge regarding a ‘real’ answer to the question, the NY Attorney General issued a statement in 2008 allowing private insurer’s to exclude living donors, which can be found here: http://www.livingdonor101.com/LDNYinsurancelaws2008.pdf. Common sense would indicate this statement did not arise out of nowhere; this is a question that had been put to the state of NY for some time and required a response.
As for the idea of insurance companies providing a discount to living donors, that approach could very well be in conflict with the prohibition against ‘valuable consideration’ as indicated in NOTA 1984.
I would caution against perpetrating the myth of living donation carrying minimal risk. While the medical community has been harvesting organs from living people for over fifty years, they’ve never felt them important enough to track or study comprehensively. UNOS acknowledges they lose track of 40% of donors within six months of surgery, and another 40% within a year. At a recent ACOT meeting, Dr. Matthew Cooper acknowledged that since 2006, when a mandatory 2-year living donor follow-up was implemented, 20% of the records since remain incomplete. What is certain is that living donation related health issues do not arise until years after donation and are therefore not documented in any way. We do know that since 1993 nearly 200 living donors have been added to the waiting list in need of their own transplant, a mean of seventeen years post-donation. It begs the question of how many have been diagnosed with end-stage renal disease or died as a result but were never identified as a living donor or brought to UNOS/OPTN’s attention.
Again, I appreciate any attention brought to the neglect and abuse of living donors. Please feel free to browse the information contained my website (including the source material for the statements made above), and contact me if you have any questions or comments.
Cristy Wright, M.Ed.
(& living kidney donor)