Advocacy Living Donor Protections OPTN

OPTN Proposed Policies Need Public Comment.

Numbers 3 and 4 affect living donors directly. Read, discuss and let OPTN know your thoughts!

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.




CMS - Medicare OPTN

OPTN Tries to Silence the Public’s Voice

OPTN was established by NOTA in 1984 as a membership organization to manage the US deceased organ transplant system. Living donors weren’t part of the equation until 2006 when UNOS’ Executive Director Walter Graham asked the Secretary of Health to allow OPTN to develop policies on living donation as well.

OPTN is considered a Public Policy Organization, which means it’s financially supported by the taxpayers and is obligated to represent and look out for the public’s well-being.


CMS (Centers for Medicare/Medicaid Services) Final Rule 2000, aka CFR 42 Part 121, establishes the makeup of OPTN’s Board of Directors, aka the Executive Committee:

(i) Approximately 50 percent transplant surgeons or transplant physicians;

(ii) At least 25 percent transplant candidates, transplant recipients, organ donors and family members. These members should represent the diversity of the population of transplant candidates, transplant recipients, organ donors and family members served by the OPTN including, to the extent practicable, the minority and gender diversity of this population. These members shall not be employees of, or have a similar relationship with OPOs, transplant centers, voluntary health organizations, transplant coordinators, histocompatibility experts, or other non-physician transplant professionals; however, the Board may waive this requirement for not more than 50 percent of these members; (emphasis mine)


OPTN’s Board of Directors consists of 45 people, but 2 are non-voting representatives of the feds. Based on the above, 10.75 of the BoD members should be ‘representative of the population’ served by OPTN, and ‘shall not be employees or, or have a similar relationship with OPOs, transplant centers, etc’.


But according to the Executive Summary (aka Meeting Notes) of OPTN’s last Board of Directors latest get-together in St. Louis:

The Board approved a waiver of the requirement regarding employment in the transplant community for not more than 50% of the Board members (and nominees) representing transplant candidates, recipients, organ donors, and family members.


So, we (the public) gets a whole 5/6 people on a 43/45 member Board to represent our interests. A whole 5/6 people who aren’t influenced or paid for by the profit-driven transplant industry.

Wow will I sleep better tonight.


I’ve no doubt that OPTN and its ilk will claim they couldn’t find qualified people to serve on the Board who aren’t also connected to the transplant industry. To that I say bull-honky. I have personal knowledge of multiple people who have applied (more than once) to serve on OPTN committees and been ignored. They weren’t even given an acknowledgement of their application, let alone an explanation for why they weren’t considered ‘qualified’. This waiver is nothing but the transplant industry’s continued attempt to control the direction of the transplant system in this country, to skew its policies and decisions in its favor.

It’s time for CMS and HRSA to step up and make sure that doesn’t happen.