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Organ Transplants: We Must Have Presumed Consent
By Larry Kramer
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More and more people with HIV and/or hepatitis B and/or hepatitis C are going to need organ transplants, particularly liver transplants. This is not an opinion. This is a fact. As more and 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, i.e., the longer we live, the more that chance grows.
With all the new drugs for HIV and viral hepatitis, it is now safe, ok, kosher to transplant "coinfecteds," which is what people with viruses are called in the transplant world. The New England Journal of Medicine has even written approvingly of such transplants. Insurance companies can no longer simply refuse to pay for these hugely expensive procedures on the grounds that they are "experimental." These operations are no longer 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 of them 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 foreign countries this extreme shortage does not exist. That is because these countries (and they include 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 in that country is deemed to be an organ donor unless s/he specifically opts out. That means that when an accident occurs to a person who has not opted out, and brain death is declared, his or her 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 new one. 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, believe it or not, 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."
The 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, and a Republican, and from the South, 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 in hell of getting passed, which is not so bad because it is such a wishy-washy, namby-pamby piece of stand-in-place legislation that we are better off without it. It is an all-talk no action-kind of bill, akin to all those Presidential commission reports Reagan and Clinton ordered to stall for time when they really didn't want to do anything for AIDS but wanted to look like they were.
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 the world 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 find that no one is listening.
I would like to close with some 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! E-mail him and tell all everyone you know to email him or call his office:
Bill_Frist@frist.senate.gov
or
202-224-3344
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