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Halloween HIV Horrors!

By the Boston AIDS Writers Group

November 1998

How was your Halloween? We know you probably heard plenty of tales about ghosts, goblins and headless horsemen. However, we of the AIDS Writers Group thought that we would share a few horror stories of our own. HIV horror stories. But what's really scary about these stories is that they are true.

Our first HIV horror story is about a guy named John. John was a gay man who had been feeling ill for several years. Despite the constant urging of friends and family he refused to be tested for HIV. One day, John became so sick that his partner had to carry him into the hospital emergency room. The diagnosis was full-blown AIDS. John's CD4 count was 17; his immune system had collapsed. Luckily, John's health improved enough for him to get out of the hospital. Upon his release, his doctor prescribed a regimen of HIV antivirals for John to take. He took them, but he frequently skipped doses or took long drug holidays.

John's health declined once more, and he was again carried into the emergency room. Showing signs of dementia and unable to walk, he was sent to a nursing home. The staff at the home made sure that John took his antiviral regimen of Combivir (3TC, AZT) and Crixivan as prescribed. His health began to improve. Noticing this, the nursing home doctor, a physician not experienced in treating people with HIV, cut back on John's Crixivan dose from three times a day to once a day! Fortunately, John's brother Alan worked for an AIDS activist organization and was made aware of his brother's reduction in medications through John's partner. Alan called the home and explained the dangers involved in under dosing HIV antivirals and the need for an HIV specialist to treat John. A new doctor put him back on the full dose of Crixivan immediately.

Clearly, John suffered for not getting an HIV test and proper HIV care sooner. When he was carried into the hospital that first time, HIV had already seriously damaged his immune system. The antiviral combinations of recent years, if used correctly, could have prevented this damage from happening. Unfortunately, once John started antivirals, he should have taken the drugs as prescribed, but he didn't. He skipped doses or took drug holidays, so he ended up in a nursing home with AIDS dementia.

In addition, the doctor at the nursing home wasn't a specialist in HIV care. He was unaware that you don't cut back on the frequency of an HIV antiviral drugs unless clinical data says that it is safe to do so. Reducing the frequency of John's Crixivan dose wasn't safe. It could lead to the development of viral resistance and his regimen would fail as a result. John needed a care provider who new better, one who was knowledgeable in treating HIV disease. If your doctor doesn't possess such knowledge don't worry about offending him or her. Go out and find a doctor who does. It is your life at stake!

Our next HIV horror story is the frightening tale about a guy named Tom. Tom had AIDS for years and years. Over that time, Tom had taken many medications, including HIV antivirals. His latest combination of drugs consisted of Fortovase/Viracept/d4T/3TC. However, the new combo wasn't successful in getting Tom's viral load down to undetectable. In fact, things were starting to get a little desperate for Tom. His viral load was approaching 100,000. He developed several opportunistic infections. He lost weight. Unfortunately, Tom had already used up all the approved antivirals. But there was hope. Several experimental drugs were becoming available through expanded access programs for people like Tom who had no antiviral options.

Unable to get it through his doctor at Tom's Fenway clinic, Tom obtained expanded access for the experimental antiviral abacavir at another site. With his doctor's approval, he added the drug to his regimen with the hope that it would bring his viral load down to undetectable. Of course that never happened. After a few months, resistance developed to the new drug, just as it had overcome the other drugs on his regimen.

Like the story before, there are two really frightening things about this one. First, when Tom added just that new drug to his failing regimen, he lost the opportunity to get the benefit of that new drug. Abacivir by itself may have brought down his viral load somewhat, but alone it was not powerful enough to help. He should never have added just that one new drug. Instead, a whole new combination of drugs was needed to get his viral load down. Tom's doctor, a physician experienced in treating patients with HIV, should have suggested that Tom wait until a powerful regimen of antivirals could be assembled for him.

Secondly, his doctor and the clinic should have helped Tom obtain all the antivirals Tom required. There were expanded access programs at the time that allowed them to do so. Although a care provider may have experience in treating patients with HIV, that is no guarantee that you are getting the best care possible. Patients with HIV also have to stay on their toes to make sure their doctor is going all out in giving them the care they need to stay alive and healthy.

Our last HIV horror story is a complex story about two lovers who pay a high price for their self-denial and thoughtlessness.

Bob was HIV positive and a nice guy. He met another nice guy named Butch and they really seemed to hit it off. Bob liked Butch in part because the sex was great. Butch was this hot top who really knew how to make Bob, a bottom, "happy." In fact, because Butch was so hot and such a manly top, Bob felt that Butch couldn't be HIV positive. "He couldn't be infected with the virus, he didn't even suck dick," Bob thought to himself. Butch was too butch! With this in mind, Bob and Butch had bareback sex (Butch wouldn't wear a condom). And although Butch never ejaculated inside of Bob, barebacking made them feel closer and the sex more exciting.

After a few months and several similar unsafe sex episodes, Bob revealed his HIV status to Butch. To Bob's shock and surprise Butch confessed that he too was HIV positive. What's more, Butch told Bob that he had a history of taking HIV antivirals, and worse still, not using them correctly. In fact, Butch had used several protease combinations but often forgot to dose them as his doctor prescribed. As a result, his virus developed resistance, and his regimens failed.

Bob had never used protease inhibitors before and was saving them for when he needed them. Sure enough, when Bob started a protease regimen the drugs didn't work. That's because Bob had become infected with Butch's protease resistant virus.

Bob and Butch should have been honest with each other right from the start. If Bob had been aware of Butch's status and his antiviral history, he would have insisted that they use a condom, even though they never completed intercourse. On the other hand, if Butch had adhered to his antivirals, his protease resistant virus might never have developed and been passed on to Bob. Just as important, Butch should have felt compelled to wear a condom when the two had sex, especially considering he was aware that he was HIV infected. Their lack of openness means that Bob has been infected with a drug resistant virus and he will not get the benefits of the protease inhibitors that he had hoped for.

These stories remind us never to be deluded that the virus has gone away. Guarding your own health and the health of sex partners remains as important as ever. Working as a team, with a doctor who is specializes in HIV care and treatment is essential for maintaining good health.

Already there are too many HIV horror stories out there. Too many. Don't become the next one.

(The Boston AIDS Writers Group is coordinated by Search For A Cure, a non-profit HIV Treatment Education and Advocacy organization. You can contact Search For A Cure at 58 Burbank Street, Boston, MA 02115. They can also be reached by phone at 617-536-2474, by fax at 617-266-0051, or by e-mail at

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