Organ donation: Can the US do better?

Editorial p 1382

It was a simple statement by my doctor. “You're dying. Without a liver transplant, you will be dead in four weeks.” After contracting hepatitis B in the operating room some three years earlier, my life as a husband, father, and orthopaedic surgeon was coming to an end As depressed as I may have been when confronted with this reality, it did not match the desperation and loneliness and fear I felt when I was placed on the waiting list with thousands of other patients.

There are 66 500 patients on organ waiting lists in the United States Four thousand of them will not get the second chance that I received, and will die, not because we don't know what to do. There are simply not enough donated organs. The supply is there: some 15 000 patients with fatal head injuries last year—all potential donors—but only 5400 were actual donors.

There are 66 500 patients on organ waiting lists in the United States

For almost 13 years, as a patient and as a doctor, I have had the time to ask the question: are we doing all we can, or all we should, for these patients? The answer is “no.”

In the past 12 years, the number of organ donors has increased by only 52%, but the need for transplants has increased by 212%. This is partly because of the large number of people infected with hepatitis C (four million in the United States), and the need for liver transplantation is expected to go up by some 585% in the next 10 years.

As a patient representative on the board of directors of the United Network for Organ Sharing (UNOS), I observed the incredible effort by transplant physicians and surgeons to devise elaborate and complex allocation schemes. These schemes attempt to correct huge disparities in waiting times for organs. The waiting times for renal transplants, for example, vary by a factor of four to five times in major cities less than 40 miles apart. The American Medical Association (AMA) and UNOS both agree that donated organs should be a national resource distributed according to need, not geography.

Our federal government has asked UNOS to develop a different system based on the patient's need, rather than some arbitrary, ever changing geographic boundary. Doctors have been asked to work within the confines of medical appropriateness, the distance organs will be transported, and so on. The patient's needs are of prime importance, not the location in which they find themselves.

But we are trying to solve this problem by looking through the wrong end of the telescope. We should be striving to conceive every possible way to produce more organs, and then any allocation scheme would work. I am proud that the AMA has started an organ and tissue donor awareness campaign, “Live and Then Give,” which will join the efforts of so many other groups to help address this problem. If American doctors will sign a donor card and encourage their families and patients to do the same a huge statement will have been made.

The state of Pennsylvania passed an act in 1994, requiring hospitals to notify organ procurement organisations of any potential donor. This allowed a procurement organisation to be the first requester, and organ donations increased by 40% the following year. The federal government instituted a similar rule, effective in August 1998, for all the hospitals in the country, which may have contributed to the 5.6% increase in the number of organ donors in 1998.

But much more will be necessary, and some innovative ideas have surfaced Suppose we let those who are willing to be donors have a higher place on the waiting list, should they ever need an organ? If you are willing to take one are you not willing to give one?

Is it not time for the United States to consider the success of the Belgium programme, where people are presumed to have consented to donating their organs when they die, unless they proactively opt out. After 10 years of presumed consent, less than 2% of the Belgian population opt out, and the country has one of the highest organ donation levels in the world.

According to a 1993 Gallup survey more than 75% of the United States population say they that would be organ donors if the circumstance arose; so why not ask the 25% who are not to opt out? The minority would have the responsibility to initiate an action, not the majority, as now. Granted, the right to opt out must be well publicised and easy to exercise. But in this era of cyberspace and the internet, that should not be a difficult task.

Earlier this year we completed a National Organ and Tissue Donor Awareness week. More people than ever before are talking about organ donation and the need for donors. But we continue to lose the battle.

Because of my gift from a 30 year old housewife who died of a bleeding aneurysm, I have celebrated 32 years of marriage, walked three daughters down the aisle in marriage, and enjoyed three beautiful grandchildren. Shouldn't everyone on transplant lists enjoy the blessings that I received?