ACOT Advocacy CMS - Medicare Living Donor Protections OPTN

Short List of How US Government and Transplant Industry Have Failed Living Donors

1954 – First living kidney donor transplant. <- just for informational purposes. 1. 1972 – Social Security Act, Section 1881 [42 U.S.C. 139 rr], establishes a Medicare benefit for those diagnosed with end-stage renal disease, and their living donors. “Any individual who donates a kidney for transplant surgery shall be entitled to benefits under parts A and B of this title with respect to such donation.” This benefit has never been put into place. If it had, not only would living donors never experience billing problems from complications and lack of mental health access, the US would have a comprehensive database of almost 40 years of living kidney donors. 2. 1994 – OPTN begins collecting social security numbers of living donors.  In other words, they have NO identifying information on any living donor prior to 1994. In addition, no quality control safeguards were implemented, so it’s impossible to confirm accuracy. 3. 1994-ish – Living donors were given ‘priority’ points on the wait list if they ever found themselves in need of the same organ. Unfortunately, they is a local prioritization, not a national one. AND because of the aforementioned SSNs, there is no pre-donation or time of donation information on any LKD wait listed who donated prior to 1994.

4. 2000 – The Secretary of Health signs a federal mandate requiring transplant centers to report one year of living-donor follow-up to OPTN. This was extended to two years in 2006.

In 2009, OPTN’s own data task force determined the subsequent database to be woefully inadequate and useless for research of analysis. Ten-plus years later, reporting rates have not increased, and punitive measures have not been taken against any transplant program for noncompliance.

5. 2000 – CMS (Medicare) Final Rule establishes composition of OPTN’s Board of Directors:

“At least 25 percent should be transplant candidates, transplant recipients, organ donors and family members. They should have with no ties to OPOs, transplant centers, voluntary health organizations, transplant coordinators, histocompatibility experts, or other non-physician transplant professionals, but the Board can wave this restriction for up to 50% of these members.”

This does not appear to be adhered to or enforced in any way.

6. 2002-ish – The living liver widows of Danny Boone and Mike Hurewitz join forces to bring attention to the respective tragedies of their husbands’ deaths. This resulted in NC and NY being the only two states in the US with living donor protections and policies (liver only). OPTN modified NY’s law for itself – but only as ‘voluntary guidelines’, not as enforceable regulation.

7. In 2007, OPTN membership, consisting of transplant centers, pharmaceutical companies and laboratories, refused to implement national standards of living kidney donor evaluation, selection, treatment or follow-up. What resulted was a series of ‘voluntary guidelines’.

To this day, each transplant center makes of their own rules in regards to living donation.

8. 2007 – CMS (Medicare) instituted a Final Rule, which provided for an Independent Donor Advocate who “must not be involved in transplantation activities on a daily basis”. Four years later, this has not enforced or implemented. OPTN has allowed Transplant Coordinators, who are paid to schedule appointments and surgeries, to don the hat of IDA.

9. 2008 – State of NY ruled that private insurance companies were permitted to deny coverage to living donors as a ‘pre-existing condition’. This is the current state of insurance for living donors. Also, some recipient’s private insurance will only cover living donor complications up to a certain amount or within a certain time frame. None of them pay for mental health treatment.

10. A Joint Societies document on the evaluation of the living kidney donor admits there is no clinical evidence of the ‘best’ way to evaluate a prospective LKD to minimize risk and ensure long-term health and well-being. Fifty-plus years, 200,000 living donors, and they haven’t even bothered to determine something so rudimentary as that.

Wow, that’s a pretty depressing Top 10 list.

2 replies on “Short List of How US Government and Transplant Industry Have Failed Living Donors”

Hi Cristy,

I recently found your blog and have been reading for the past couple weeks. I love your passion for living organ donors. My best friend was a kidney donor to my mom just last year, so safety and health for both of them are very important to me. Could you possibly e-mail me with info to contact you with questions I have? Thanks!

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