Organ donor system: An unholy mess

Transplants should be seen as miracles

During the years I worked as a journalist, I wanted to avoid the appearance of partisanship. So I had only one bumper sticker on my car.  It said: “Transplant Kidneys, Don’t Bury Them.”  

Call it a family obsession.  My sister Ellen got one of the very early kidney transplants in 1970, with our mother donating the organ.  Most consider transplants to be medical procedures, but we always knew better. Each one is a miracle. Doctors thought she would be lucky if Mom’s transplanted kidney lasted five years, but it lasted 20. 

There is really no excuse for the unholy mess that the American organ transplant system is in today.  It may be organizational ineptitude, bureaucratic apathy, a lack of competent oversight or a mix of all three, but years of uncorrected poor performance have led to people waiting and dying needlessly as they hope and pray for a transplant.  

And most of the time, kidneys are the organs that people wait for most often.   

The United Network for Organ Sharing (UNOS) has had the federal contract to run the national organ donation program since 1986.  Last year, the House and Senate held extensive hearings on the problems in our system of collecting and allocating organs for transplants. 

Ellen, looking at an Arizona sunset

 

It’s not pretty.   

UNOS oversees a network of 57 Organ Procurement Organizations, (OPOs) across the country -- nonprofit organizations that procure organs from deceased donors and “provide support to donor families, clinical management of organ donors and professional and public education about organ donation,” according to the website of the Centers for Medicare & Medicaid Services (CMS). But, as Sen. Elizabeth Warren, D-Mass., said in a hearing statement (at around one hour, seven minutes on the video) that skewered UNOS’ record of oversight. “UNOS is 15 times more likely to lose or damage an organ in transit than an airline is to lose your luggage,” Warren said.  

She said that despite 1,118 complaints over a decade, UNOS only put one Organ Procurement Organization on probation. There is an enormous gap between the best and worst performing of these regional organizations. The hearing aired an appalling track record: While some healthy donated organs weren’t even picked up when they became available, others were discarded and basic tests were not done properly. Between 2008 and 2015, about 249 transplant recipients contracted a disease from a donor organ and one-quarter of them died.  

‘UNOS is 15 times more likely to lose or damage an organ in transit than an airline is to lose your luggage,’ said Sen. Warren.

For its part, UNOS’s former CEO Brian Shepard claimed at the Senate hearing that its organization had little authority to rein in underperforming OPOs and said it was the job of the federal government through the Centers for Medicare and Medicaid Services. And honestly, the feds cannot possibly blame everything on UNOS. But the criticism was sharp and bipartisan. Just last month, UNOS lost its guaranteed monopoly over the transplant system as the feds broke up the contract and put it out to bid.  

My family has both rejoiced and mourned after a transplant. Ellen’s first transplant was a resounding success. It began working just one-half hour after the organ was taken from my mother and nestled into my sister’s thin body, wracked from three years of kidney disease, then considered terminal.  I was in eighth grade but skipped school that day to hang around the hospital, waiting nervously, and was able to talk to a doctor soon after the operation who assured me that all was well. I could see that very night how her cheeks became rosy again, replacing the pasty, wan look she had had for years.   

That operation nearly 53 years ago was one of only about 1,200 such kidney transplants across the country in 1970 and one of fewer than 500 from a living donor, according a detailed historical overview from the book “Clinical Kidney Transplants, 1985,” by Dr. Paul I. Terasaki, who kept track of the annual statistics at UCLA.  Last year, in contrast, there were 25,000 kidney transplants.  

All those years ago the operation was still the stuff of science fiction, the medical equivalent of walking on the moon.  Modern medicine had only figured out around the mid-1960s that high doses of steroids would help transplant patients stave off rejection. Before then, patients had to undergo full-body irradiation in a bid to suppress the immune system and keep it from rejecting the new organ.  The treatment was harsh.  Patients died. Success stories were few.  

By the time the transplant saved Ellen’s life, things were looking up. Recovery had its own complications. Yet she got the chance to live to adulthood and even had a career.  

Her second transplant, in 1991, involved a cadaver kidney, and I thought a lot about the kindness of strangers that cold November day as I awaited news from a hospital hundreds of miles from my New England home. Our family’s good fortune was another family’s heartbreak; the donor was a young man who had been in a fatal motorcycle accident. But our joy was short-lived. The transplanted kidney began a chain reaction that shut down Ellen’s liver. My wickedly funny and relentlessly optimistic sister died a few weeks later at the age of 35.  

 If I thought that my sister’s death was due to medical sloppiness or the ineptitude that the congressional investigation uncovered, I would be on the warpath. At the time, I sent Ellen’s autopsy records to a doctor I trusted, who assured me that nothing could have been done to prevent the tragedy.   

Ellen, a month before her second transplant, playing with my then 3-year-old daughter Anna and Rocky the Raccoon

A person dies every hour in America waiting for a transplant, said Dr. Seth Karp of Vanderbilt University Medical Center, who testified before a House panel on this issue last year. There are 110,000 waiting for transplants and if the organs are treated with more care, he believes that there are at least enough hearts and livers to go around. The problems particularly delay African Americans from getting the help they need; despite only being 12 percent of the population they make up 20 percent of patients waiting for a transplant.   

To me, the problem is not just one of systems or procedures, but attitude. Each donated organ can save and change a life.  These operations were miracles in 1970 and remain so today. They should not be treated as though they are the modern-day equivalent of a wisdom tooth extraction.  Every patient waiting deserves to know that they have a chance. That chance is precious. It should be treated that way, by the federal government and an overhauled organ donation system.