20 years of AIDS: the lessons unlearned
May 25, 2001
On June 5, 1981, the U.S. Centers for Disease Control reported the first cases of what has become known as Acquired Immune Deficiency Syndrome (AIDS).
Now, 20 years later, more than 23 million people have died of the virus, and 36 million are currently infected worldwide. The last two decades of this epidemic brought suffering, death and significant but fitful medical progress. But despite this, the lessons from AIDS have not been learned.
First, when politics trumps science, people die. One of the most effective ways to prevent the spread of HIV among injection-drug users is to allow them legal access to sterile syringes. Needle-exchange programs reduce needle sharing without increasing drug abuse, according to detailed reviews by the University of California, the National Research Council, the National Institutes of Health and the General Accounting Office. But despite such overwhelming proof, federal AIDS-prevention dollars still can't be used to support these life-saving efforts.
Conversely, growing evidence indicates that "abstinence only" education programs don't work. These programs intentionally withhold information about condoms and safer sexual practices in order to persuade young people that abstinence is the only way to avoid AIDS and unwanted pregnancy. Comprehensive programs that not only encourage delayed sexual activity but also present all the facts about condoms and safer sex practices are more effective, but President Bush has called abstinence education "the right choice" and has urged that funding for it be doubled.
Second, the marketplace doesn't always work. Although the pharmaceutical industry deserves credit for developing drugs that have prolonged the lives of hundreds of thousands of people battling HIV, it has until recently hoarded its medicine by pricing it out of the range of most patients, especially those in Africa where the epidemic is most severe.
Because of free market constraints, once a drug is approved for sale, a manufacturer has no financial incentive to conduct expensive research that could prove its drug inferior to a competitor's. Nor is the manufacturer likely to suggest that delaying therapy could actually benefit patients.
What's more, numerous studies hint at low-cost approaches like nutritional supplementation that could help in the fight against AIDS, but those leads have either been followed up slowly or not at all.
Journalist Jon Cohen notes in his new book "Shots in the Dark" (W.W. Norton and Co., 2001) that "from the outset, major pharmaceutical companies stayed clear of AIDS vaccine work." Why? Because there is little profit in vaccines.
Third, those living with HIV have led the way. Many of them demanded reform, and got it. They identified critical roadblocks in the FDA's drug-approval process. After having to almost literally knock down doors to get researchers to listen to them, people with HIV have offered useful and often essential insights into the design of research. Because of their input, many studies have been completed that otherwise could have fizzled and new treatments have been approved.
Years of pious rhetoric brought little action to help the tens of millions of HIV-infected people in Africa, Asia and Latin America. They lacked access to treatment until the raised voices of people with HIV finally forced the issue onto the world's agenda.
AIDS-activist organizations like Treatment Action Campaign in South Africa and ACT UP chapters in the United States and Europe have forced lower drug prices, made generics available and cajoled developed countries to assist poorer nations.
We can celebrate the progress made in fighting AIDS, but if we don't pay attention to the lessons of the last two decades, the next 20 years could bring millions of more needless deaths.
Bruce Mirken is a free-lance writer based in San Francisco. He can be reached at email@example.com.