Dear Editor,

I am writing about the request by UNOS/OPTN, the nation’s organ donation and transplantation system, for public comment: “2024 public comment on UNOS will open Jan. 23 and close March 19. A special public comment period for expedited placement variance is open Dec. 21 – Jan. 21 (UNOS).”

Comment on “Expedited placement variance?” That is a problem.

What, for the love of hoi-polloi reality and clarity, is “expedited placement variance?” This question is indicative of the problem the self vaunted academics of UNOS/OPTN have with the public they serve. They are out of touch, presenting themselves as being above the learning and language of those they serve, which they mostly are. But it also shows how out of touch they are with the public’s need to know how the equitable distribution of scarce organs works. Those beneath them deserve a comprehensible explication of this board of strangers’ decision to deny them life. Without proper communication we can’t expect change. All our UNOS obstructed doctors and their dying patients need a change.

I am a twice transplanted liver recipient. I had a hard time getting UNOS to approve me for a transplant. They have a system of approval for a liver transplant based on the MELD. They have a subset of UNOS approved exceptions to that MELD rule. Three times UNOS denied me a liver in spite of my qualifying exceptions. A courageous and compassionately upset doctor crowed for me more forcefully a fourth time and I was approved. I am now a part of a patient transplant support group. We believe these exceptions should be the rule.

We also believe it’s equally important that our doctors, especially the surgeons, be granted increased governance over who gets an organ. It’s crazy that a distant group of strangers at UNOS, who have never met a particular dying patient, can override that patient’s doctor’s decision that they need to be transplanted.

And by all means UNOS needs transparency. They should have a guide book for the lay public on how the UNOS organ granting process works. And they should make doctor submitted patient appeals available to the patient. If HIPPA guarantees a patient’s request for a copy of their appeal as a part of their medical record, UNOS needs to honor such requests. They have denied me. Class action anyone?

I would like to ask the public to please comment: https://unos.my.site.com/publiccomment/s/?cycle=a3vRP000000A9QDYA0 (OPTN oversees UNOS). Help those in need who are dying.

Thanks,

Terry Enright

Mrtransplant1@gmail.com