The Bay Area Reporter - February 23, 1998
Jeff Getty, ACT UP/Golden Gate Writers Pool

Hepatitis C (HCV) is a frightening new epidemic that is spreading by leaps and bounds all over the world. The National Institute of Health estimates that there are close to 4 million people infected in the U.S. alone. Researchers also believe that as many as 30 percent of HIV patients also have HCV or HBV (Hepatitis B). As Hext has learned, having both diseases concurrently can be a deadly situation that holds little hope for the future.

On the brighter side, hepatitis patients have begun to organize. Small support groups are popping up here and there. Larger agencies have been formed in some areas. There is the Hep Education Project in Seattle which offers a hotline and referrals, while Denver has the HepC Connection with hotline. There are currently plans to start the HCV Global Project in Oakland, California, a project to help find funding for research as well as to begin education campaigns. To many longtime AIDS activists, history seems to be repeating itself - except with a different disease. Having witnessed the AIDS epidemic and society's response, hepatitis organizers hope to keep control over the new burgeoning nonprofit industry that has already begun to form around their disease.

Alan Franciscus heads up a small support group network for people with HCV in San Francisco and Marin, and is helping to create the HCV Global Project mentioned above. He sadly notes that up until recently there has been little or no research into HCV treatments or cures. "Only because drug companies realize that there is a huge market and profits to be made, are we now seeing research happening," he said. Franciscus is anxious to find solutions to a disease that kills as many as 10,000 Americans each year. HCV activists are planning a march on Washington DC this March to pressure Congress to fund more research and consider future planning.

Research into HCV has thus far yielded little help. Only one treatment, Alpha Interferon, has achieved FDA approval. Experimental research on protease inhibitors for HCV is only now in the infancy stage. Liver transplantation for advanced patients is not a very viable option because there are over 7600 HCV patients currently on organ waiting lists (many others never even qualify for the waiting lists) and there are not enough livers to go around.

One technology that could keep HCV patients who are in critical condition alive, at least while waiting for the next available liver, is pig liver bridge systems. Pig livers can be kept in a machine outside the patient's body and used to filter their blood when the human liver has failed - not unlike dialysis for kidneys. Experimental patients have been kept alive for weeks using this method, as it can take weeks before an organ is available. Later, these patients received human organs.

Most Hep patients in need of a liver die during this critical waiting period.

The problem with pig liver research is that certain scientists have called for a moratorium to stop all further experimentation until concerns about pig virus transmission to humans have been addressed. One would assume that safe sex practices following pig liver bridge use would effectively block any unknown pig virus from entering the population. But conservative scientists say that no one can be trusted to be safe all the time. So HCV patients are left to die without a pig liver bridge, because they cannot be trusted to have safe sex.

When Franciscus first heard about pig liver possibilities, he was surprised and amused. "My friend Rose and I laughed for about a half hour over this," he remarked. But when pig liver bridge technology was explained to him, he quickly got over the "yuk factor" and agreed that the research must go forward. When asked if he would agree to such a procedure if his own life were on the line, he responded, "Absolutely, if it comes to a life and death situation. The values that you think - get thrown out the door."

Franciscus also added that he was very much an animal rights proponent, ''but when it comes to the survival of people, we need to take certain steps." Franciscus would also "absolutely" agree to have safe sex from the time of a pig liver transplant forward. "I think everyone should practice safe sex anyhow," he said. "I think it would be a small price to pay for your life."

HCV and HIV patients alike agree that current organ allocation rules are unfair and outdated. On a recent edition of the KQED radio show Forum, HCV patients remarked about their frustration with organ allocation systems and slow research. One speaker mentioned that there were high hopes for pig liver research. With moratoriums already in place in the U.K. - and proposed here in the U.S. - against this research, it is not likely that the HCV death toll will be slowed by cross-species technology anytime soon.

As for Allen Hext, ACT UP/Golden Gate and others have pulled out all the stops to find a way to pay for his liver transplant. On February 19, activists phoned and fax zapped Medi-Cal offices with hundreds of pictures of various organs and demands for a change in Medi-Cal policy. Medi-Cal Director Dr. George Wilson has agreed to meet in two weeks to consider new recommendations regarding transplant payment exclusions.

If you have HIV and have been denied organ transplantation, contact ACT UP/Golden Gate at (415) 252-9200. To find out more about HCV treatments and support groups or to find out if you are at risk for contracting HCV, call the HepC Support Project at (415) 834-4100 and leave a message. A volunteer will call back later. To get on the HepC Support Project mailing list, leave a message or drop a line to HEPC Support Project, P.O. Box 427037, San Francisco, CA 94142.

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Always watch for outdated information. This article first appeared in 1998. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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