June 5, 2001 --Twenty years ago today, the first cases of a strange new disease that ravages the immune system were reported to the public by the CDC in Atlanta. Because all five cases were homosexual men with similar symptoms, officials at that time believed they were dealing with a gay-related disease.
They were wrong.
Twenty years later, the disease we now know as acquired immune deficiency syndrome, or AIDS, has been diagnosed in three quarters of a million people in the U.S. More than half of those people -- 448,060 -- have died. Today, an estimated 800,000-900,000 people in the U.S. are living with HIV, the virus that causes AIDS, and about one-third of them don't even know they're infected.
"Like so much of the epidemic, this is a time of apprehension and a time of reflection," says Kevin Frost, vice president for clinical research and prevention programs at AmFar (American Foundation for AIDS Research). "Obviously, enormous progress has been made. There are significant accomplishments that we can point to in the course of the last 20 years that we should all be proud of. We've made enormous strides in reducing the death rate in this country."
But Frost says the anniversary also makes many in the AIDS community feel frustrated by the inability to reach people at risk for infection and provide them with the education and tools they need to keep themselves safe.
Surgeon General David Satcher, MD, reported last week that one group at particular risk in the U.S. is gay and bisexual black men. In this group, the rate of HIV infection approaches that seen in the African nation of Botswana.
Some have suggested that infections are continuing to rise among young gay and bisexual men because of an "it can't happen to me" attitude as well as a belief that AIDS treatments have made the disease manageable. But while the medications used to treat the disease have become better and more effective in the last two decades, they do not offer a permanent strategy for dealing with infection. In fact, recent research indicates that resistance to a single anti-HIV drug tripled from 3.5% to 14% since 1996 and resistance to multiple drug regimens has increased from less than half a percent to nearly 6%. When patients develop resistance, the pool of drugs that doctors can use to treat them becomes much smaller.
Fortunately, researchers are now working on ways to combat resistance, including one promising drug currently being tested that is said to be 1,000 times more powerful than any of the available anti-AIDS drugs. HIV has the ability to change its shape to evade medications attempting to bind to it and prevent it from making new copies of itself. The new drug, known as TMC-126, seems to be flexible enough to bind to HIV regardless of what shape it takes.
The overall approach to the treatment of HIV/AIDS has changed significantly in the past 20 years. In the last five years alone, there has been a dramatic shift from initiating treatment upon diagnosis to delaying therapy until symptoms arise. The change has been made in an attempt to extend the benefits of therapy for as long as possible and minimize side effects that impinge on quality of life and further threaten the health of infected people.
In addition to diarrhea, increased risk for diabetes, and kidney problems, doctors have begun reporting that some patients who have been on anti-AIDS drugs for years are experiencing a redistribution of their body fat that results in bulges and lumps -- a condition known as lipodystrophy.
The well-known antiviral drug AZT is one of 18 anti-AIDS drugs available, many of which must be taken multiple times per day.
"Adherence to medications is a major, major problem," says Michael Kolber, MD. "You need to be about 95% compliant. That's almost an unattainable number ... and people are now looking at once-a-day treatments for that reason."
Kolber, director of HIV adult services at the University of Miami School of Medicine, says the future lies in medications that combine the multiple drug 'cocktails' so many HIV-infected people take into a single tablet taken once or twice a day.
This would enable patients such as Michael Karchinski, who at age 36 has been HIV-positive for 12 years, to take fewer pills each day. Karchinski says fewer pills and a less regimented schedule for taking them is an improvement over various therapies he's taken through the years that left him sick and weak. But it's not as simple as it sounds.
"They're making it so we take less, but the pills are two to three times bigger than they were," says Karchinski, who works for MTS, a nonprofit group in New York City that helps people with HIV and AIDS get back into the work force.
Still, he remains optimistic for the future.
"My first hope would be that they find a cure," he says. "In the interim, educating people is the next best thing, as well as finding drugs that have less toxicity and hopefully in the long term don't cause us to die of something else."
Frost says he believes the next big breakthrough in anti-AIDS drugs will come from drugs that take a different approach than what is now available.
"Right now we have drugs that target two places on the viral life cycle," he says. Protease inhibitors attack one spot, and drugs that attack reverse transcriptase constitute the other.
"There are potentially multiple spots in the viral life cycle that we could be attacking in this process that would, I believe, provide us with a far greater shot at really inhibiting the viral growth," he says.
Some experts worry that news of better medications may give the false impression that improvements in medication make HIV somehow less deadly and encourage those at highest risk to be less fearful of infection. Most of all, experts want HIV and AIDS to stay in the public consciousness, and they look toward better, more wide-reaching prevention programs.
"We still have 40,000 new infections every year," says Frost. "Much of my thinking around this 20th commemoration is ... why aren't we doing all that we could be and should be to stem the tide of this epidemic?"
The anniversary also brings to mind another major goal of AIDS research: to find an effective vaccine.
It's difficult, even for vaccine insiders like Mark Feinberg, MD, to predict how long it will be before a vaccine is available to prevent people from becoming infected and/or limit the amount of virus in an already infected person's body.
Feinberg, director of the Emory University Vaccine Center in Atlanta, says he doesn't think it will happen any time in the next five years.
"Fortunately, there is a lot more activity taking place in HIV vaccine research today, and I think there is a clearer sense of what direction we need to move in," he tells WebMD. "And the level of science is higher. All of those things are good, but it just is going to take a while for the studies to answer the questions, and if what we are testing now doesn't behave as well in humans as it does in monkeys -- and there are a number of reasons to think that it may not -- we'll have to wait longer."
Two of the most promising vaccines use genetically altered versions of a common cold virus and a smallpox virus to deliver immune-boosting substances into the body, Feinberg says. These vaccines are just beginning human testing.
Although another vaccine called VaxGen is a little further along in human testing and has raised hopes among some in the AIDS community, experts including Frost and Feinberg are doubtful that it will emerge as a viable contender in the vaccine race.
"I believe we will have vaccines that alter the natural history of the infection and contribute to containment of the epidemic," Feinberg says. "[They're] just not here yet."