September 9, 2013
John Roberts, M.D.
President
Board of Directors
Organ Procurement and Transplantation Network/United Network on Organ Sharing
700 North 4th Street
Richmond, VA 23218
Dear Dr. Roberts:
I am writing as President and CEO of Not Dead Yet, a national disability rights organization. This response to OPTN’s recent request for public comment is a follow up to four previous letters concerning the Donation after Cardiac/Circulatory Death protocols and Bylaws rewrites, dated January 3, June 14 and August 28, 2012, and June 19, 2013, copies of which are attached for reference.
My comments this time are brief because I am dealing with the loss of my younger brother, who passed away last Thursday. I don’t normally bring my personal life into these discussions, but it is very relevant because my brother died from liver failure. He was unable to qualify for a transplant and, without getting into details, this was in part due to the stringent criteria in place based on the scarcity of organs for transplant relative to the overall public need. My brother’s love and support toward me, especially when I was growing up as a teen and young adult with a disability, affected my life in profound and positive ways, so I hope that you will believe me when I express the value I place on organ donation.
Yet as I sit here in the type of motorized wheelchair I have used since I was age eleven due to a progressive neuromuscular disability, thinking about my brother and wanting to be able to be an organ donor someday, I cannot help but fear what I have seen from OPTN over the last two years. The OPTN policies and rewrites of bylaws, coupled with the utter failure to respond substantively to our comments and concerns, convey a deep and abiding devaluation of people with the most severe disabilities, the kind of bigotry that is either unconscious or that you feel is somehow justified. As someone who is very likely to need a ventilator in the future, someone who works with others who use ventilators full time already, I continue to be concerned about the complete lack of protection for people’s right to informed consent and right not to be subjected to organ procurement activities in advance of an informed decision to withdraw life support.
As you will note from the attached letters, the majority of our concerns focus on the importance of ensuring that individuals and families are able to make decisions about the withdrawal of life sustaining treatment prior to and independent from any contacts from organ procurement organizations or related organ procurement activities. As explained more thoroughly in the attached letters, we are concerned that organ procurement activities may unfairly and wrongfully tip the scales in health care decision-making at a vulnerable time by implying that someone’s organs are more valuable than his or her life with significant disabilities. I urge you to review our previous letters for a complete discussion of those issues.
In addition, OPTN’s discriminatory attitude toward people with disabilities is made eminently clear by the current rewrite’s section on nondiscrimination (Section 5.4.A):
A candidate’s citizenship or residency status in the United States must not be considered when allocating deceased donor organs to candidates for transplantation. Allocation of deceased donor organs must not be influenced positively or negatively by political influence, national origin, race, sex, religion, or financial status.
The failure to include disability status in the listing of protected groups speaks volumes. Disability based discrimination in organ transplant eligibility has received recurring attention from the disability community over the years, and I will simply refer you to a recent policy paper by the Autistic Self-Advocacy Network for a thorough discussion: http://autisticadvocacy.org/2013/03/asan-releases-policy-brief-on-organ-transplant-discrimination/ Omission of disability protection in the rewrite’s nondiscrimination section is unacceptable.
We urge you to refrain from acting on the pending proposals before you have carried out your duty to protect the interests of potential organ donors as well as safeguard public trust in the integrity of the organ procurement and transplantation system.
Please contact me with any questions you may have and, above all, create a system that all of us can trust to value our lives. Thank you for your time and attention.
Sincerely,
Diane Coleman, JD
President/CEO