Print this page    •   Back to Web version of article

We Must Have Presumed Consent

By Larry Kramer

January 2003

More and more people with HIV and/or hepatitis are going to need organ transplants, particularly liver transplants. As more of us all over the world discover we are carrying one or more of these viruses, even if we are being treated for them -- or particularly if we are being treated for them -- the more likely it becomes that one of our organs is going to cease working effectively. And the longer we are being treated, the longer we live and the more that chance grows.

With all the new drugs for HIV and viral hepatitis, it is now safe, OK, kosher to transplant "coinfecteds." The New England Journal of Medicine has even written approvingly of such transplants. Insurance companies can no longer simply refuse to pay for these expensive procedures on the grounds that they are "experimental." Too many of them have been done successfully.

Right now there are hundreds of thousands of people in this country waiting for organs. Most of them will die before they get them. Many will die after they have been put on a waiting list. Why is this? Because not enough people in America donate their organs to be used after they die. It is as simple and as complicated at that. There are more than five people waiting for every organ made available by donation.

In many countries this extreme shortage does not exist. That is because these countries (including Austria, Belgium, Denmark, Finland, France, Italy, Norway, Singapore and Spain) have what is called a Presumed Consent organ collection system. That means that every person is deemed to be an organ donor unless s/he specifically opts out. When an accident occurs to a person who has not opted out, and brain death is declared, organs can be taken immediately without the time-wasting rigmarole America requires for "approval." An organ only has a few hours to get from one body to the next. In America, you sign the back of your driver's license if you are willing to be a donor, and even then most centers still require permission from a family member, which, believe it or not, may not be given.

I have been trying, since my transplant, to find a way of changing America's organ donor system to one of Presumed Consent. Well, you would have thought that Presumed Consent was akin to the biggest blasphemy known to civilization. Opponents from the right, the conservatives, the orthodox, you name it, including the ACLU (did you know that the organs of dead people have rights?) have screamed in opposition. These opponents do not care that Spain, a very Catholic country, has the most successful organ procurement system in the world.

And no one I can find knows how the system can be legally changed. Who does it? Congress, by passing a law? HHS, by issuing an edict? State-by-state or community-by-community, by putting it on a local ballot? As Robert Bazell, the chief medical correspondent for NBC Nightly News, warned me when I embarked upon this new activist journey, "Larry, you will find that it is like punching air."

One person who can help change this system more than anyone else is Senator Bill Frist (R-TN). He is a transplant surgeon himself. He knows the hideous horrors of watching people desperate for organs die. But he is a politician with Presidential ambitions, so he is not exactly willing to be Mr. Flag Waver for organ transplants. He has prepared a bill, with Sen. Christopher Dodd (D-CT), to investigate Presumed Consent. But this bill has no hope of getting passed, which is not so bad because it is such a wishy-washy piece of legislation that we are better off without it. It is an all-talk no-action kind of bill.

Frist needs to be reminded that going out further on this issue is not only the morally right thing to do, but also will ultimately help him win voter support. Despite what people think, voters like candidates who take moral, life-saving positions. And all the people who need organs have lots of relatives and friends.

AIDS activists have been here before. It is the beginning of a new crisis and no one of any importance wants to pay it an iota of attention. In the coming years, the number of people around waiting for new organs is going to rise to the millions from the several hundred thousand currently in need. Once again I find myself screaming out loud about a huge and coming catastrophe and no one is listening.

I would like to close words from Dr. John Fung, who saved my life: "Patients are dying and the public still does not understand that saying no to donation means someone will die. No one wants to be so blunt. No one wants to raise the American conscience to make people feel that it is their human obligation to pass along their body to the living when they die. This is a systematic deficiency in American culture, the idea that you are out only for yourself and have little or no obligation to society as a whole."

Tell Senator Bill Frist: America must have presumed consent for organ donation! Email him and tell everyone you know to email him or call his office: or 202-224-3344.

Back to the Project Inform Perspective January 2003 contents page.

This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. You can find this article online by typing this address into your Web browser:

General Disclaimer: is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.