Thursday, March 27, 2008

How long is that list?

From today's Columbus Dispatch:

More than 98,000 names are on the list of people in the United States waiting for an organ transplant. But according to a recent Washington Post story, a third of those are inactive: They are ineligible to receive an organ.

Critics say the list is deceptive and makes the problem seem worse than it is. They have a point. The numbers are used by policymakers who decide donation rules and ways to increase donations, by potential donors to decide whether to donate and by potential recipients trying to gauge their chances of getting a transplant.

Providing an accurate list hardly would change the fact that the need for organ donations is huge. Subtracting the inactive patients leaves about 65,000 people on the list. And last year, nearly 7,000 Americans died waiting for a transplant. Obviously, the need is urgent.

The United Network for Organ Sharing, which runs the transplant system, says many of the inactive patients have encountered complications that seem likely to be ironed out, and they might be restored to eligibility.

Still, keeping inactive names on a list that gets so much publicity could cause people to question the integrity of the system. If they're fudging this, what else are they fudging?

The people who run the system need to remember that honesty is the best policy, along with accuracy and accountability.

From the WaPo:

A Survivor of the Waiting List

Wednesday, March 26, 2008; Page A18

The most important point in the March 22 front-page story "A Third of Patients on Transplant List Are Not Eligible" was this statement by Robert Higgins, president-elect of the United Network of Organ Sharing: "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them. None of this changes the fact that there is a significant number of people who die waiting."

It nearly happened to me. On Nov. 27, 1990, I was placed on the waiting list for a heart transplant at George Washington University Medical Center. After a few months, my surgeon told my wife that "even if a heart became available today, he is too sick now for the operation." Fortunately, my health improved, and I was able to withstand the operation on March 31, 1991.

Readers of the article should understand that organ transplantation works. I know. I have had my transplanted heart for 17 years.


So, some of my notes:

--I was "inactive" for a weekend once--when I went away to visit my grandparents in Pittsburgh for Memorial Day. It was my grandfather's 80th birthday, and I knew that it would probably be the last time I saw them before I had surgery. Even then, I knew things weren't going well for me. So, in order to enjoy the weekend, the clinic moved me to "inactive." That changed the day I got back.
--This seems to be a problem with mostly kidneys, although I know it can happen with other organs, too. Sometimes you're listed because, like me, you might be OK now, but you can get very sick, very fast. When I was in college I went from dancing with my fiance at a semi-formal to being in the PICU, barely alive, in about four days. My doctors were always concerned that that could happen again, and if it did, they wanted me to be in the position to receive a transplant.

I don't think this should give people cause to worry, since, like the Dispatch editorial says, the list is still huge. 19 People die every day waiting for organs they don't get. The need is still tremendous.


Dave said...

Over half of the 98,000 Americans on the national transplant waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 6,000 of our neighbors suffer and die needlessly every year as a result.

There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

Emily said...

I'll have a post up about LifeSharers shortly.