Illinois is proposing to lift its legal ban on HIV-positive people donating organs—but only for transplant into other HIV-positive patients. State Rep. Larry McKeon is behind the measure; he is openly gay and HIV-positive. No state currently allows such transplantation.
As therapy for HIV has improved and PWAs are living longer, increasingly they are dying of non-AIDS related causes. Liver failure has become the largest single cause of death, often because of coinfection with hepatitis C but also because of alcohol abuse and the stress that some medicines can place on the liver. The three can work together in synergy speeding up the process of liver failure.
Often transplantation is the only remaining option. But donor organs are hard to come by, the United Network for Organ Sharing reports that 85,000 people are on a waiting list for all types of solid organ transplants and only 2,200 have received a transplant this year. Many will die before they find a match.
Another reality is that HIV-positive patients often face discrimination when there are competing candidates for an organ. Some of it is the stigma associated with gay sex or injection drug use and some surgeons still believe that HIV is a fatal disease; they feel that other patients have a better claim on an organ. That has been disproved by research showing that HIV-positive patients have survival rates similar to other transplant patients, but attitudes can be hard to change.
Lambda Legal currently is wrangling with the U.S. Dept. of Veterans Administration to assure that HIV-positive patients receive equal access to organ transplants.
McKeon says the ban on HIV-positive organ donations made sense when those laws were passed in the 1980s, 'Nobody thought that an HIV-positive person might benefit from the infected organ.' He wants to change the law to reflect the new medical reality and perhaps put a small dent in the waiting list for organ transplants. He says, 'It's about saving lives and prolonging lives.'
The Illinois House overwhelmingly passed the measure in mid-March and the Senate is poised to do the same.
Changing the law is just the first step; medical practice must also change. Leading experts in HIV have a decidedly mixed reaction to the proposal and would like to see it carried out in a research setting.
'I think it is fraught with hazards,' says Douglas Dieterich, a liver specialist and leading expert on HIV and hepatitis C coinfection. He is vice-chair and chief medical officer of the Mt. Sinai Medical Center in New York.
'Hep C infected livers go into hep C infected recipients, and the same thing with kidneys, so as not to waste any organs,' he concedes, 'But HIV is not such a simple disease.'
'There are a multitude of different viruses in each patient, different clones of virus that have varying degrees of susceptibility or resistance to medications. So putting a liver into a patient with HIV may transplant a highly resistant andromeda strain of HIV into that patient.'
Eric Daar, a researcher at the UCLA Medical Center who has worked in the area of HIV 'superinfection' or infection with a second variant of the virus, shares that concern. He balances it against the fact 'that there aren't a lot of alternatives for these people' who need a liver or heart transplant.
HIV is difficult to transmit sexually and distinguishing between initial and secondary infection is extremely complex, as a result, little is known about the frequency of such events. The few incidents of superinfection that have been documented are noteworthy for their dramatic negative impact on the patients. However, it is possible that these anecdotes are the exception and not the rule for acquisition of a second virus.
Daar believes the risk of superinfection is 'much higher' with an organ transplant than with sexual exposure, in part because of the sheer volume of new HIV introduced into a patient and also because the organs likely will contain a large variety of HIV archived over time in resting cells in the donor tissue.
Both docs see such work as experimental and, if done, should be conducted under a research protocol that would make the risks clear to patients and at the same time gather very detailed information that will help build better understanding and treatment options.
Dieterich 'would require that the donor either have no treatment history [for HIV] at all or be undetectable [for HIV viral load] and have no evidence of resistant virus.'
But neither of those is foolproof. Research suggests that drug-resistant virus is on the increase and may account for up to 20% of new HIV infections in some parts of the country. The tests that are commercially available to detect resistant virus do a good job of detecting the most prevalent variations of HIV in a patient, but they often miss variants that constitute 15% or less of the total.
As Daar points out, 'The organs that we are worried about need to be transplanted almost immediately. And no matter what, resistance data is going to take longer to get than that.' Decisions likely will have to be made 'based upon what is immediately available, and that is recent viral load testing, recent therapy, and the history of therapy or resistance data.'
He feels that the recipient's anti-HIV drug cocktail—perhaps modified to reflect knowledge of the therapy history of the organ donor—'might minimize the overall risk.'
Dieterich mentioned a recently initiated research program at 15 centers across the nation that will transplant 125 livers and 175 kidneys into HIV-positive patients over the next few years.
He suggested the protocol might be modified to include ten HIV-positive donors to begin to get a better understanding of the issues involved with those types of transplants.
The one thing that all parties agree on is the need for increased awareness and for more people to sign up as organ donors so that one person's misfortune might bring hope for another.
