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Like Eppich, AIDS patients, today, can plan for their futures. But the optimism brought by the new drugs of the 1990s has dimmed as doctors and their patients have realized that the virus won't be vanquished so easily. Nor have the societal issues raised by the disease gone away.

The cocktails, the source of so much hope, have become less effective. As HIV replicates in the body, it is able to change ever so slightly. These changes have allowed it to steel itself against new drug enemies. Changing cocktail combinations has helped curb resistance, but researchers say there just aren't enough drugs or combinations to stay ahead of the constantly mutating virus.

"It isn't even a question of when we're going to start losing people," says Murray. "We already have because we have run out of new effective drugs to try."

New drugs are currently in the pipeline and moving ahead at a rapid pace, according to Murray. Research on potential AIDS vaccines is underway, but progress has been slower. In fact, some have referred to the vaccine pipeline as a "pipette." Since 1987, more than 40 different AIDS vaccines have been tested on a limited basis. Only one, AIDSVAX, has been thought promising enough to merit testing in humans in a large-scale study. Much of the research is being done in Thailand, though some of the work is also underway in the United States.

As the drug arsenal has expanded, so too has the debate about the disease, both within the medical community and outside it. In fact, the drugs that spawned the "golden era" of AIDS treatment have usually been at the heart of the discussion.

One major issue is that the drugs are expensive. Treatment for HIV and AIDS patients cost the United States government $6.9 billion in fiscal year 1999, up from $4.5 billion just two years before, according to the Kaiser Family Foundation.

The drugs also can be difficult to take. They must be taken on a strict schedule, and patients must remain on them for life. "Although some follow drug regimens nearly perfectly, perfect adherence is difficult," says Murray. "However, patients need to know that poor adherence to drugs may set them up for resistance."

Other pills prescribed to combat the side effects of anti-HIV drugs complicate the regimen. Eppich's day, for example, typically begins around 6:30 a.m. with a trip to the refrigerator, where one of his medications is kept. He then mixes the drug with a liquid and injects it into his side. Then he starts taking the first round of the 60-plus pills he takes every day. It's an hour and a half before he can start his day.

While the drugs keep the virus at bay, they often can make him feel less than healthy. He's nauseated sometimes and tired. Then there's another problem that he jokes about, but finds troublesome nonetheless. "I call it the eternal diarrhea," he says. "It's a part of life.''

As more people have taken the drugs, more has become known about this side effect and others. Particularly troubling side effects include liver toxicity, nerve damage, diabetes, high cholesterol levels and unusual accumulations of fat in the neck and abdomen.

Physicians such as the University of Minnesota's Henry have monitored these effects and have listened to their patients. As a result, medical wisdom has changed. In February 2001, federal treatment guidelines changed significantly. Instead of recommending aggressively treating new AIDS patients with drugs, the guidelines now call for waiting until the immune system weakens significantly or until HIV in the blood reaches certain levels.

The reason for this, says Henry, who was an international advocate for this change in philosophy, is that toxicities linked with the use of AIDS drugs appear to outweigh the benefits of early treatment with the drugs.

False Complacency

As the specter of AIDS receded, physicians, researchers and AIDS advocates began to notice that the effectiveness of the prevention message — the call for safe sex and drug practices made so stridently by AIDS advocates — also seemed to ebb.

The incidence of HIV infections began to climb in the late 1990s. So did the incidence of some sexually transmitted diseases — such as gonorrhea — that are closely linked with the type of behavior associated with HIV transmission and are believed by some researchers to even play a role in HIV transmission.

Physicians and AIDS advocates believe these events may be linked to the development of the AIDS drugs. A new generation of people in AIDS risk groups, experts say, now appears to believe that the drugs will protect or cure them of the virus and that an AIDS diagnosis today isn't serious.

"I hear about this all the time from patients,'' said Schacker, who sees patients at a Minneapolis clinic. "There is this belief that the drugs are so powerful that they can abandon safe sex practices. I am very concerned about it, and it's safe to say that [other researchers] are, too.''

So are AIDS advocates such as Project Inform's Delaney. He says some of the problems are caused by unrealistic expectations created by pharmaceutical companies.

"There were some overly cheery drug ads," Delaney says. "The message was, 'Don't worry about AIDS. It makes you prettier, it makes you sexier, it makes you stronger.'"

Researchers, physicians and advocates are beginning to target the issue and debate solutions. One researcher, Simon Rosser, Ph.D., M.P.H., of the University of Minnesota's Program in Human Sexuality, believes that an old tool, safe sex public health campaigns, needs to be dusted off and — more significantly — updated.

Rosser, who studies transmission of sexually transmitted diseases and the psychology involved, notes that dramatic advances have been made in treating AIDS. Yet little has been done, he says, to tailor public health messages and find ways to make them more effective.

"Essentially, we are using the same techniques that were used in the 1980s,'' Rosser says.

Delaney echoes Rosser's concerns, but says that researchers also need to make sure they remain vigilant in their fight against the disease. In his opinion, some of the urgency to find new treatments for AIDS may have been lost.

"The urgency of the old days is past, so the research is drifting in the doldrums of the past,'' Delaney says. "We're not going to let that happen.''

What's Ahead?

As the third decade of AIDS begins, physicians, patients and advocates find themselves looking ahead while still dealing with issues like prevention that have been contended with since the historic CDC report in 1981. A cure, once thought to be imminent, is still years away.

Despite this, those within the AIDS community of researchers, patients and advocates believe that progress has been made against the disease. Researchers know more than ever about the virus, experts say. That there are debates about treatment guidelines also is an advance, since once there were no treatments. The highly visible role in public debate played by AIDS patients and advocates has also helped to lift the stigma once associated with the disease, as well as helped ensure public funding for research and prevention.

The challenge now, experts say, is to bring the tools that have made progress against AIDS in the United States to other countries. High on the list are Africa and Asia, where lack of education and medicine have allowed the virus to spread and kill nearly unchecked.

Project Inform, for example, plans to help find cheaper tools for the diagnosis of HIV and effective ways to lobby the government for increased funding of the international AIDS effort. It may not seem like much, says Delaney and other experts, but perhaps the main lesson from the struggle against AIDS is that the fight will be a long one and that small advances add up.

"We haven't lost hope,'' says Murray.

AIDS: Activism and Advocacy

During the late 1980s, some AIDS activists and others were critical of the FDA, saying the agency was holding up the availability of drugs for treatment. With a lack of effective therapies, people demanded government-sponsored research, large-scale "Manhattan Project-style" drug development, and the availability of a myriad of untested treatment approaches.

Unfortunately, many of the resulting efforts — often driven by sheer desperation — proved to be misguided. Some people mistakenly believed that the FDA's role was to develop new drugs. But even those who knew that the FDA's role is to review the results of drug research — not to develop and market new drugs — thought that the agency's approach was too conservative, given that people were dying from lack of treatment. In other words: How great a risk could even inadequate drugs pose when the inevitable outcome was death?

In 1988, the FDA created an AIDS coordination staff, now part of the agency's office of special health issues, to act as a bridge between the advocacy community and the agency. The two-way flow of information fostered by the office encouraged education and understanding on both sides. And the old adversarial relationship has given way to one that is more cooperative and constructive after more than a decade of working together.

The FDA has actively sought input on regulatory issues from AIDS patients. More than 45 patient representatives have participated on FDA advisory committees considering HIV/AIDS-related issues in recent years. The FDA realizes the value of the patient perspective. And the patient community has developed a better understanding and appreciation of the importance of regulatory oversight. The various benefits of this relationship have spilled into other areas well beyond HIV/AIDS.

Tags: HIV and AIDS

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