Washington Blade - September 28, 2001
Lisa Keen

Because the overall health of a patient is among the factors that determine who gets to the top of that list, fewer than 40 HIV-positive patients have received life-saving liver transplants, even though many gay men with HIV are already infected with hepatitis B, which attacks the liver.

With antiviral drug combinations prolonging the lives and improving the health of those with HIV, more and more gay men with HIV are finding themselves on that precious list.

Hepatitis B, like HIV, often lies dormant for years and then relapses into life-threatening liver disease. Two studies early this year suggested that such relapses might even be associated with protease inhibitor combinations; a study late last year linked relapse to discontinuing the nucleoside 3TC.

But a potent anti-HIV cocktail isn't the only cause of resurgent hepatitis B. Ask famed gay author and AIDS activist Larry Kramer.

Kramer said his hepatitis had been inactive for years and that, although he has also lived with HIV infection for years, he has managed to keep his AIDS viral load relatively low (at about 700) using only two nucleosides.

Then, about six months ago, the hepatitis came roaring back.

"I was near death," Kramer said. "I weighed 120 pounds."

One out of every 20 Americans will become infected with the hepatitis B virus, according to the American Liver Foundation, many without knowing it. About 10 percent will develop chronic hepatitis. And about 5,000 Americans succumb each year to chronic liver disease caused by the hepatitis B virus.

How many people with HIV have hepatitis B infection, too? Like the AIDS virus, the hepatitis B virus can be transmitted through bodily fluids during sex, making co-infection "relatively common," says the National Institute of Allergy and Infectious Diseases. One study last year suggested 14 percent. And like other infections, hepatitis B disease both weakens a person with HIV and triggers replication of the AIDS virus.

"Everybody told me I had only a year left in my liver," said Kramer.

Seven days to live

Unfortunately, a patient's liver must have only about one week left to move that patient to the top of the list for receiving a donor liver. The "list" is maintained by a nonprofit charitable organization, the United Network for Organ Sharing.

To get on that list, a patient must be evaluated by a hospital that performs liver transplants. Although UNOS is revising its criteria this year, its current policy suggests that patients with "sudden liver failure that leaves them with a life expectancy of fewer than 7 days" go to the top of the list.

"When an organ donor becomes available," notes UNOS, all patients waiting for a liver are compared to the donor to determine which potential recipient is best suited for the donor liver.

"Factors such as medical urgency, time spent on the waiting list, organ size, blood type and genetic makeup are considered," says UNOS. "The organ is offered first to the candidate that is the best match."

UNOS policy requires HIV screening of all potential recipients but does not collect data on how many are on the waiting list. The policy suggests, however, that a potential candidate for organ transplantation who tests HIV-positive and who hasn't yet registered any symptoms from the virus "should not necessarily be excluded from candidacy for organ transplantation."

UNOS maintains the national waiting list under contract with the Health Resources & Services Administration of the U.S. Department of Health and Human Services. And UNOS says it matches organ donations to recipients under a policy that "ensures that all patients have a fair chance at receiving the organ they need -- regardless of age, sex, race, lifestyle, religion, financial or social status."

Since 1988, according to UNOS, only 37 liver transplants have been performed on people with HIV.

But UNOS also urges hospitals to advise a person with liver failure and HIV that "he or she may be at increased risk" of serious adverse reaction -- even death -- because of the transplant. Patients who receive transplanted organs must take drugs to suppress their immune systems. Such "immunosuppressive therapy" is critical to stopping the body from naturally rejecting the donated organ, which it perceives as a foreign object.

"I'm here to tell you [that] you'd better have somebody smart and indefatigable" helping with learning about and arranging for a liver transplant, said Kramer, because "it's like dealing in a foreign language and a foreign country."

Kramer said he first sought help from Mt. Sinai Hospital in New York, but he said he was not put on that institution's waiting list because he did not want to comply with the hospital's requirement that he be taking protease inhibitors before the surgery.

Kramer's physician helped him find an institution that would consider a person with HIV for a liver transplant -- the University of Pittsburgh Medical Center. Now, said Kramer, he's on its list. He carries a beeper and is poised to charter a plane to get to Pittsburgh from his homes in Connecticut or New York City within the four-hour time limit should he get the call.

'Moral claim' to transplant?

Although there has been no reported opposition to Kramer making the waiting list for a transplant, a series of articles about transplant issues in the Cleveland Plain-Dealer three years ago noted that the scarcity of donor organs, coupled with "some people's disdain for homosexuals or IV drug users," has emboldened some to argue that "some people have a greater moral claim to a donor organ than others."

Thus far, those kinds of arguments do not appear to be the biggest obstruction to transplants for people with HIV. The biggest obstacles appear to be available organs and money.

As of Sept. 7, UNOS had more than 18,000 people on its waiting list for donor livers -- more than 2,600 of them in Kramer's region of the country. Last year, only 4,954 liver transplants were performed nationwide, and more than 1,600 people waiting for liver transplants died. Only 122 medical centers in the country perform liver transplants, and, apparently, only 17 centers have performed them on people with confirmed HIV infection.

According to the latest information from UNOS, only 33 liver transplants have been performed on people with confirmed HIV infection since 1995; 11 of those were performed just last year. The 11 transplants represented less than 1 percent of the 4,955 liver transplants performed last year.

As of a year ago, hospitals affiliated with the University of Miami and University of Pittsburgh performed four each, University of California-San Francisco had performed two, and at least one was performed in New York.

The National Institutes of Health has awarded UCSF a grant to study how well people with HIV do after transplants, according to a spokesperson for the National Institute of Allergy & Infectious Diseases. The study involves UCSF; Cornell, Mt. Sinai in New York, Georgetown in Washington, D.C., and the universities of Maryland, Minnesota, Pennsylvania, Virginia, and Pittsburgh; the Mayo Clinic in Minnesota; and EMMES, a biomedical research firm in Rockville, Md.

Pricing a liver

"And then," said Kramer, "there's the whole financial thing. You have to affiliate yourself with a medical center, and many people affiliate with several medical centers in different cities. ... Each hospital requires you to have this really expensive battery of blood tests, and CAT scans, and MRIs -- you name it -- thousands and thousands of dollars' worth of tests which no insurance company will pay for until you get accepted by hospital."

Kramer said hospitals could also require a deposit of as much as $500,000. "When we went [to UPMC] for tests, the place is filled with people who are begging to be accepted and can't afford it," he said. "I heard so many heartbreaking stories about people selling houses, family members selling houses so a person can get a transplant."

In testimony before a congressional subcommittee three years ago, UNOS President Larry Hunsicker noted that some Medicaid programs do not cover the expenses for transplants, "which means that there will be no transplants for many poor or rural citizens."

Most recently, the chair of the National Association of People With AIDS could not get insurance coverage for her transplant. Gay & Lesbian Advocates & Defenders filed an emergency lawsuit for Belynda Dunn, whose health maintenance organization refused to cover the cost of her transplant, contending that liver transplants for people with HIV are still "experimental."

Dunn has HIV and hepatitis C, which is relatively similar to hepatitis B but caused by a different virus. Just one state to the south, in Connecticut, Kramer said his insurance company, Blue Cross-Blue Shield, has agreed to pay for his transplant.

"The system sucks. The whole organ transplant system sucks," said Kramer, who said he is hopeful that, if his transplant goes well, it will help smooth the way for other people with HIV to get insurance coverage for the procedure.

It is, in other words, a system somewhat similar to the medical system gay men were forced to navigate with a pioneer spirit and a great urgency at the beginning of the AIDS epidemic. There are issues of costs, insurance coverage, and who can afford to be treated; issues of how the medical establishment works and how it might be reformed to ensure the best treatment for the largest number of people; and issues of politics and publicity.

It is no surprise that Kramer, a pivotal figure in the success of ACT UP in marshaling the medical establishment against AIDS, is once again at the top of another important list -- a growing list of gay men who are, and likely will be, trying to marshal the medical transplant establishment for themselves, their lovers and friends, and others in the coming years.

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INFO

United Network for Organ Sharing

1100 Boulders Parkway, Suite 500

PO Box 13770

Richmond, VA 23225-8770

1-888-TXINFO1 or 804-330-8503

Fax: (804) 327-6769

www.unos.org

datarequest@unos.org

National Association of People With AIDS

1413 K Street, NW, 7th Floor

Washington, DC 20005

(202) 898-0414

fax: (202) 898-0435

www.napwa.org

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WB010904

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