Tonya Ingram Feared the Organ Donation System Would Kill Her. It Did.

[Nevilledog]

https://www.nytimes.com/2023/01/28/opinion/organ-donation-reform-delays.html

No paywall
https://archive.is/qfoP8

It’s 2019, and the 27-year-old poet and mental health activist Tonya Ingram is looking for a kidney on Instagram. Her best option is to compel someone to agree to a living donation. Where Tonya lives in California, the wait list for a kidney from a deceased donor is up to 10 years long. Tonya, like many on dialysis to treat kidney failure, knows the odds of her surviving the wait are slim; the median survival time for patients on dialysis is five years.

I first met Tonya after seeing her post on Instagram seeking a donor. At the time, I was a video producer for New York Times Opinion working on a story about the failures of the organ recovery system and how patients were resorting to do-it-yourself tactics to find organs in time to save their own lives. Tonya appeared in my video illustrating the problem. Everyday Americans are doing their part, signing up to be organ donors, but the organizations in charge of organ recovery (known as organ procurement organizations, or O.P.O.s) have been plagued with inefficiencies and abuses, and the contractor that runs the national system — the United Network of Organ Sharing (UNOS) — has been failing to oversee them.

The organ procurement system is made up of 56 organizations, each with a monopoly in its jurisdiction. When someone dies and can donate an organ, O.P.O.s are supposed to go to the hospital, talk to the person’s family and manage the process of transporting donated organs to those in need, but all too often they have failed to show up — literally. The most recent government data from 2020 shows that most are either underperforming or failing, and some O.P.O.s have reported inaccurate data to cover it up. According to a study updated in 2019, O.P.O.s failed to recover around 28,000 organs a year, viable organs that could save some of the roughly 100,000 people waiting for them.

Tonya asked the government to hold these organizations accountable, and naïvely, we thought it would be that simple. Our efforts would surely get Tonya a kidney.

She did everything she could to advocate for change, everything that our government asks of concerned citizens: She wrote an op-ed; appeared in a government video; wrote letters to members of the Biden administration, including the Centers for Medicare and Medicaid Services (CMS) administrator Chiquita Brooks-LaSure and the head of the Health Resources and Services Administration, Carole Johnson; worked with her local congresspeople, including Representative Katie Porter; and even testified before the House Oversight Subcommittee on Economic and Consumer Policy in May of 2021.

*snip*