Afterword by Jeremiah Johnson and Jason Walker

Many things have changed in the nearly four decades since the first cases of AIDS were identified. In the early days of the epidemic, unnecessary fear was spread because people didn’t know how the virus was passed on or that AIDS was even caused by a virus. That virus, HIV, is the human immunodeficiency virus, while AIDS is acquired immune deficiency syndrome, the condition someone can develop after years of having HIV. Without medicine, people living with HIV will typically develop AIDS in about four to eight years, at which time their immune system becomes unable to protect them, and they are at risk for multiple infections.

While we now know that only four types of bodily fluids can transmit HIV—semen, vaginal fluid, blood, and breast milk—in the 1980s, many individuals erroneously believed that HIV could be passed on through actions such as sharing a water glass, leading to even more stigma for affected communities. Thankfully, these days, we know that normal daily activities are not a concern; things like sharing utensils, toilet seats, hugging, and kissing are 100 percent safe.

In the early 1980s, there were a lot of major questions about this new virus and very few answers. It would take years of community advocacy and scientific research to turn that around. In 1983, no one was tested for HIV because no test existed until 1985. In the first years of the crisis, the only way to know if you had HIV was if you had already progressed to having AIDS and developed an AIDS-related illness. Now there are many options, including rapid tests using a drop of blood or saliva, which can provide results in twenty minutes or less.

There was also no treatment to prevent people from progressing to AIDS. It would take until 1996 for pills to be developed that could stop the virus. Early medication also caused serious side effects, and people living with HIV had to take several pills a day. Fortunately, today we have several options that are very well tolerated and require far fewer pills, in many cases just one per day.

We also know now that HIV treatment can help stop the virus from getting passed on through sex. This concept is called U = U, or undetectable = untransmittable. When someone on treatment gets the amount of HIV in their blood down to a point that we can’t even measure it, then that person will not pass HIV on via sexual intercourse.

We’ve made significant progress in developing tools that help people stay HIV-negative. In New York, the epicenter of the U.S. HIV/AIDS epidemic, mother-to-child HIV transmissions have been essentially eliminated through standardized HIV testing and treatment as a key component of prenatal care. In the past, lack of access to unused syringes was a leading cause of increased HIV transmissions among individuals who injected drugs. The creation of syringe-exchange programs resulted in dramatic reductions in this population.

At the start of the epidemic, there was no guidance regarding sex; people in the affected communities were simply told to stop having sex indefinitely. Recognizing that that was not a reasonable solution, community members like Richard Berkowitz and Michael Callen (authors of How to Have Sex in an Epidemic: One Approach) developed guidelines for safe sex practices, including the use of condoms to avoid transmitting or acquiring HIV. But while condoms have unquestionably saved lives and prevented infections, they are not enough. Just like we see with contraception for women, human beings need choices. Fortunately, we now have other options.