Thursday, June 6, 2013

A Walk on the Transplant Side

The liver newly implanted in Lou Reed is not thrilled with its 71-year-old host, The Onion reports. The rock ‘n’ roll icon “is really hard to get along with,” the 3.5-pound organ is quoted as saying.

You know these are roiling times in the world of organ transplantation when even The Onion is devoting its satire to the subject. And though The Onion did not actually interview the newly relocated organ, the simple fact of the singer known for “Walk on the Wild Side” receiving a replacement liver is true.

Also true is a confluence of news stories that highlight both extraordinary, life-extending advances in organ transplantation and the inequity and heart-break created by those very advances, because the scarcity of organs, especially hearts and lungs, means a select few will benefit. The supply is not meeting the demand.

Just in the past week, while ethicists and pundits alike pondered the appropriateness of awarding a new liver to Reed, whose admitted excesses contributed to the failure of the original, a 31-year-old man surprised his surgeons with how robust he appeared at a press conference in Utah, only weeks after he received both a new heart and new liver in a single surgery. Read the story here

His was a joyous occasion, far different from the mood at Children’s Hospital of Philadelphia, where a 10-year-old girl with lungs ravaged by cystic fibrosis desperately needs a transplant but no organ is available. That is, no organ is available to those atop the children’s list, where donor organs are even more rare by comparison with those for the teen-adult list.

Physicians, surgeons and other transplant authorities have deemed issues of organ size and surgical risk sufficient to place children on a separate list. Those reasons are being questioned heatedly and understandably by the parents, and a online signature drive rallying support for the child’s transplant has generated more than 300,000 signatures.

On Wednesday, lawyers for the girl’s family won a temporary court order making her eligible to seek an organ from an adult donor. One day later, the same judge made a similar ruling for another child seeking access to the adult transplant list. 

I look forward to better understanding the reasoning behind creating separate waiting lists by age. I've read both that a modified adult lung hold great promise for a child, and that modifying the lung adds seriously to the surgical complexity of the transplant. Is the transplant success rate sufficiently diminished for a child receiving a modified adult lung to negate the potential benefit in years of life? Is a satisfactory answer to that question even possible? 

Who sets these policies? Transplant physicians, government officials, specialists in immunology, experts in organ donation, donor families, transplant recipients and members of the general public.

And yet U.S. Rep. Patrick Meehan from Pennsylvania, part of the drive to get the child new lungs, referred to “the arbitrary policy” keeping her off the teen-adult list. The policy may well be wrong, in this case, but it is not arbitrary. The policy also has been widely described as “federal,” but it was determined by transplant surgeons and families, among others. And who is better placed to make such policy? Certainly not an online signatory at, or a politician or bureaucrat.

There are a number of useful online resources for understanding the thinking behind transplant policies, including here, here and here.

Interestingly, the United Network for Organ Sharing, which holds the federal contract and operates the organ-sharing system known as the Organ Procurement and Transplant Network, notes in an FAQ on lung transplant: “As transplant professionals apply this system and learn from it, some changes will likely be required to better meet the needs of transplant candidates. In fact, this system is designed to be flexible and allow for improvements.”

In Utah, transplant surgeons, working consecutively, placed new lungs and heart in a 31-year-old man who surprised them less than two months later with his impressive physical presence. Amazing -- even miraculous, if you’re given to such a word choice. He’d been on the waiting list for 718 days.

Those transplant teams, or their colleagues elsewhere, are the experts behind these newly controversial allocation policies. They're the ones who would modify an adult organ to fit a 10-year-old.

As the heart surgeon said: "We have a young man sitting here who has the gift of two organs from a family that was kind enough to give the gift of life. And he looks terrific. If you pass him on the street you won’t know he had a transplant."

According to UNOS, nearly 120,000 people are on the national transplant waiting list. About 92 get transplants daily, while 18 die. About 1,700 are on the list for new lungs. If the 10-year-old gets an adult lung, someone else won’t. Probably someone lacking an online signature drive.

As Lou Reed’s new liver “told” The Onion: “He just has this way of making you feel completely inadequate.”