While in San Francisco for the Retrovirus Conference, I kept seeing wheat-pasted flyers that defaced posters for the San Francisco AIDS Foundation. "SFAF is homophobic," they said, or "HIV is a myth." It was clear to me that the AIDS denialists, those who believe that HIV is not the cause of AIDS, were experiencing a resurgence, at least in the City by the Bay. Since then they have disrupted treatment education forums, and lobbied Congress to not reauthorize the Ryan White Care Act.
Their movement has been with us since the late '80's when they began spreading the message that it was not the virus making people sick, but other factors, including anti-HIV drugs such as AZT. They were partly right about one thing. Though not the cause of AIDS, the early nucleoside analogs sometimes made people ill. The drugs could also delay disease and improve survival as long as they continued to work against the virus (until resistance had set in). But at the time, it was much harder to tell when the drugs were, or had stopped, working because viral load tests were not available to clinicians for patient management. Instead, people were kept on therapy until clinical progression or major drops in CD4 cell counts, long after the drug's effectiveness had worn off. At that point, the nucleoside analogs were merely toxins that probably did cause more harm than good.
However, the AIDS denialist movement became rather quiescent around the time the protease inhibitors appeared on the scene, and when triple combination therapy was shown to dramatically decrease HIV levels, and the incidence of AIDS-related opportunistic infections and death. Surely, as clearly as any other evidence, this seemed to prove once and for all that HIV caused AIDS and that keeping the virus suppressed kept the disease at bay.
Over the last two years however, the AIDS denialist movement has gradually been picking up steam, at roughly the same time that the very visible signs of lipodystrophy appeared.
Then, shortly after the Retrovirus Conference, GMHC's hotline phones began to light up. Callers were frightened by an article that had appeared in Gear
magazine by longtime AIDS denialist journalist Celia Farber, describing the "unimaginable horror" of antiretroviral therapy. The article quotes respected physicians who complain that HAART
is being used far too early and is harming otherwise healthy HIV-positive people. However, all of these doctors stressed that the drugs have had a dramatic beneficial impact on the treatment of AIDS. "There is absolutely no question whatsoever that protease inhibitors have helped people," said Dr. Joseph Sonnabend. "I have personally seen what was being called the Lazurus effect [where chronically ill people rise off their deathbeds]," she quoted Dr. Micheal Lange of St. Luke's Roosevelt as saying.
But the article is mostly a vicious personal attack on Dr. David Ho. Says Dr. Miles, who was also quoted in her article, "She had a very deliberate agenda that she built her article around. It seemed to be to bash David Ho. I don't know why."
Farber essentially blames lipodystrophy on protease inhibitors and Dr. Ho. She asserts that the protease inhibitors were approved mostly because of Dr. Ho's theory that eradication might be possible if the virus is fully suppressed by potent therapy. She ignores the body of clinical evidence of reduced opportunistic infections and AIDS-related mortality that led to marketing approval of ritonavir and the other protease inhibitors. Instead, she only notes reports of drug toxicity. Eventually, she gets back to old AIDS denialist rhetoric, which denies HIV's causative role in AIDS. Along the way, she includes comments from AIDS denialist "experts" such as mathematician Mark Craddock from the University of Technology-Sydney. He demonstrates his grasp of the microscopic with the following quote, "Ho's equations predict that over the course of 10 years, an HIV-positive person will produce more particles of HIV than there are atoms in the universe."
Such sensationalism sells magazines. It also makes our jobs communicating the complex issues surrounding the long-term side effects of HIV treatment more difficult. People should be warned about how debilitating these side effects can be when making their treatment decisions. The trick is how to do this without panicking patients, and without scaring people who need to be on therapy.
But I wonder whether this treatment education dilemma, and the resurgence of the AIDS denialist movement, could have been avoided if the HIV community had not initially been in a kind of collective denial about the potential long-term side effects of HAART. Some of us, including myself, were also a bit naive or over-optimistic that eradication would be so easily achievable. Until we had gathered more long-term data, caution was probably warranted before the treatment of those with less advanced disease became public health policy.
I worry that I bear some responsibility as a treatment journalist, along with mainstream media and the pharmaceutical industry, for hyping the experimental approach of hitting hard and early. I certainly underestimated the potential for long-term toxicity. A proper respect for the consequences of drug therapy would have been a better thing. Fewer people might have been hurt. It is clear that some have been, and this has provided fuel for the AIDS denialist movement, which in turn is causing even more harm with their message that people don't have to practice safer sex or go on treatment at all.
This should cause us to be more circumspect. AIDS is not a simple problem, and throwing drugs at it is not the simple solution we might hope it to be. Unfortunately, the drugs come with their own set of problems, and it may take us more than a few years to sort them all out.
Back to the GMHC Treatment Issues Spring 2000 contents page.