NDY Public Comment Impacted By A Personal Sorrow

On September 9th, I submitted another comment letter to the Organ Procurement and Transplantation Network (OPTN).  The letter addressed the latest proposed rewrite of OPTN policies.

There are two new things about this comment letter that I want to share.  The first is a personal sorrow.  Four days before I wrote the letter, I lost my younger brother Steven to liver failure.  The emotions of that loss drove me to express my comment in a different way than usual.  Here are the two paragraphs that convey the relationship between my loss and the policy concerns NDY has been pressing upon OPTN for nearly two years.

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. 

Second, the letter addresses a startling problem in the OPTN rewrite.  The rewrite’s section on nondiscrimination (Section 5.4.A) makes OPTN’s discriminatory attitude toward people with disabilities eminently clear:

A candidates’ 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 and is unacceptable.  As my letter notes, “disability based discrimination in organ transplant eligibility has received recurring attention from the disability community over the years.”  I referred OPTN to the best document I have seen on this subject, a recent policy brief by the Autistic Self-Advocacy Network.

For an update on the Paul Corby transplant eligibility case reported in the ASAN policy brief, and a chance to sign a petition to support nondiscrimination in Corby’s eligibility for a heart transplant, go here

Finally, to read the rest of my newest comment letter, go here.  And previous OPTN comment letters can be found here.  It’s time for the U.S. Dept. of Health and Human Services, which contracts with and theoretically oversees OPTN, to take a stand and enforce disability rights in the organ procurement and transplantation system. – Diane Coleman


One thought on “NDY Public Comment Impacted By A Personal Sorrow

  1. Dear Diane,

    Congratulations on your victory. We are sorry for your loss.

    Please excuse the delay in this message and forgive me for expressing our condolences in a public forum rather than privately. Fred and I are so sorry that you lost your brother. We have brothers of our own whom we love deeply. When we lose a beloved family member we lose an important link to our past, an essential part of our present, and a joyfully-anticipated part of our future as well. Please know that our hearts are broken for you. Love and best wishes, Denise and Fred.

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