Larry Kramer, HIV & Organ Transplants
December 1, 2002 1:29 AM   Subscribe

"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."
- Larry Kramer, actor/writer/producer/author & veteran esteemed activist, has survived nearly 12 months since his liver transplant last December. [BTW, that's how long he said he needed to finish his mighty tome-in-progress, 'The American People']. The founder of Gay Men's Health Crisis, ACT-UP and other community action groups needed the operation due to a co-infection with Hepatitis B Virus, a situation which is becoming increasingly common now that long-term survival rates for HIV+ folks improve, and other viruses have more deadly effects. Naturally, the coming crisis in organ transplants leads the ultra-activist to a new, personal but less formal protest: a campaign for presumed consent.
"In a previous interview Kramer also remarked that he did not feel welcomed or wanted at Mt Sinai. Other issues such as homophobia, AIDS-phobia and ethical concerns about "wasting good organs on HIV positive patients," or the fear that donors might stop giving organs if they find out PWAs are receiving them, have all influenced and slowed HIV positive transplant progress." In a recent New York Times interview, Dr. Fung (Kramer's surgeon)stated that "homophobia has been one of the problems in moving HIV positive organ transplants forward. Such homophobia is veiled, and never openly admitted." Kramer's liver transplant "has cost Medicare, so far, over $500,000 and Empire Blue Cross, so far, over $100,000 for the continuing medications I must take, including a monthly pop of some $10,000 for something called Hepatitis B Immune Globulin, which I believe I must receive for the rest of my life. And you need to get your blood tested every few weeks. That costs a lot too." How many HIV+ folks in the US - let alone globally - can afford that?
posted by dash_slot- (3 comments total) 1 user marked this as a favorite
Sorry - I see that's tiny print. A single [small] tag didn't seem to have an effect in preview, & 2 of 'em turns the quote into spider scrawl. Ugh.
posted by dash_slot- at 1:34 AM on December 1, 2002

Tip: highlighting it makes reading it easier.
posted by MiguelCardoso at 2:08 AM on December 1, 2002

I certainly applaud his campaign for presumed consent. The situation is the same here in Australia as in the US - you are presumed not to be a donor unless you or your family give express consent, regardless of whether you are listed as a donor on your license.

The situation of people dying without their organs being available for transplant is tragic, particularly when most would be happy to be a donor but their families do not give consent for one reason or another, even when the person has indicated a preference in writing to donate their organs. As one who has a family member waiting on a suitable organ, this attitude is hard to understand. For those struggling with the social stigma of HIV at the same time, I can only imagine the feelings of helplessness they are going through.

One way that people can help is to make sure that all their family are aware that they wish to be an organ donor themselves. This has to be done personally with anyone in your family who may be called on the make a call if you are dying. Make it clear that you want to do this and, if necessary, instruct your family that they are to release your organs if asked to. Don't be squeamish.
posted by dg at 3:26 PM on December 1, 2002

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