The history of the HIV/AIDS epidemic can be broken down into the periods before and after 1996, when modern HIV treatment, known as “highly active antiretroviral therapy,” first came into widespread use. Many of the individuals profiled in The Graying of AIDS were diagnosed as HIV-positive before effective combinations of medications had been developed, and their experiences with the virus reflect the harrowing early years of the epidemic. Living with HIV and AIDS today is still a challenge, but we have come a long way in a short period of time. It is important to recognize the critical breakthroughs that have resulted from the tremendous commitment of time, energy, and resources by providers, activists, researchers, and funders; the extraordinary obstacles long-term survivors have overcome; and the important work still ahead of us.
In June 1981, The Centers for Disease Control and Prevention (CDC) first reported clusters of unusual illnesses among gay men in major American cities. This outbreak, initially dubbed “Gay-Related Immune Deficiency” (“GRID”) was re-labeled “Acquired Immunodeficiency Syndrome” (“AIDS”) in 1982 when it became clear that the illness was not confined to the gay population. In 1984, researchers identified the virus that causes AIDS, which was eventually named “Human Immunodeficiency Virus” (“HIV”).
It took a few years to develop treatments that could keep HIV in check. In addition to being extraordinarily expensive, early HIV medications like AZT were often prescribed in high doses to be taken every four to six hours. Though such medication schedules could be difficult to adhere to, strict observance was critical to ensure treatments remained effective. The few drugs that were available were often highly toxic, difficult to tolerate, and increasingly ineffective over time as the virus was prone to develop “treatment resistance” to drugs that, in those days, tended to be prescribed individually rather than in combination.
In the mid-1990s, the development of different kinds of antiretroviral medications (“ARV”)—each interrupting a different stage of virus replication—and the practice of using three or more of these medications at the same time brought new hope to people living with the virus. This treatment approach—often referred to as “HAART”—meant that even if the virus stopped responding to an individual medication in the “cocktail,” the other medications could effectively suppress the virus while new drugs were being developed. Early HAART regimens still required taking multiple pills at strategically timed, round-the-clock intervals. However, as treatments have continued to evolve, medication regimens have become much simpler, although challenges related to long-term toxicity, tolerability, and compatibility with other medications remain. Treatment results, while often remarkable, vary from person to person for a number of reasons including the stage of HIV disease at initial diagnosis, other illnesses or medications that might impact a person’s ability to tolerate treatment, and drug-resistance that builds up over time. And despite the best efforts of critical programs like ADAP (AIDS Drug Assistance Program) that help bring essential medications to people who can’t afford them, the inconsistent access to high quality health care from community to community and region to region has meant that many living with the virus have been unable to take full advantage of the extraordinary advances in treatment made in the last fifteen years.
If there is a downside to these treatment breakthroughs, it is that they have made it easy to become complacent. A shared sense of urgency has, for some, given way to a mentality that with all of these great new medications available, HIV infection “isn’t that big a deal” anymore; at the same time, many continue to cling to the idea that HIV infection happens to “the other guy.” The truth is, of course, a bit more complex than that: while it is possible to live much longer and more comfortably with HIV these days, HIV infection is not curable and requires life-long treatment. What’s more, both the virus and the medications used to treat it can wreak havoc on a person’s body over time. And while anyone can become infected with the virus, it does disproportionally impact some groups more than others (For more on this, see “Demographics & Trends”). What’s more, in the autumn of 2008 the CDC published the first set of statistics created using an improved methodology and found that earlier methods had underestimated the rates of new HIV infections for many years. We now know that new infections in the US have remained relatively constant since the late 1990s, although the demographics have shifted over the course of the epidemic.1
For a more detailed history of the HIV/AIDS epidemic, we recommend The Kaiser Family Foundation Interactive HIV/AIDS Timeline.