We Are Lost and Found

by Helene Dunbar

  Or so I thought.

  Now it seems clear that many of my friends were, in fact, infected during this time and over the next few years.

  Although initially controversial, the safe sex message in How to Have Sex in an Epidemic: One Approach, the pamphlet Michael finds in Connor’s kitchen, would be embraced by a community desperate for some answers. Written by Michael Callen and Richard Berkowitz, two early AIDS activists who themselves were sick, their guidelines gave us our first real clue about protecting ourselves from this deadly plague. It wasn’t the amount of sex you were having, they argued, but rather the exposure to body fluids, like semen and blood, that put you at risk.

  But beyond the talk of condoms and the relative dangers of various sexual activities, their most revolutionary suggestion was that perhaps our best protection against this new disease might be love. That if we loved the people we were having sex with—even if it was only for a night or even an hour—we would not want to risk making them sick. It wasn’t just about protecting ourselves, it was about protecting one another.

  And so, like many others, I adjusted my sexual practices to safe sex only. And life went on.

  Yes, I still had moments of panic, wondering if that bruise on my arm was the first sign of a KS lesion, or whether that sudden attack of diarrhea was the flu, food poisoning, or something worse. There was no “AIDS test,” no identified virus or infectious agent, no idea of how long the disease might be incubating in your body. So, if you didn’t die or wind up in the hospital with an AIDS-related infection, if you got better, you didn’t have it and could assume that the Angel of Death had passed over your door.

  And, yes, I was lucky. For many, AIDS was already a full-blown nightmare. People were dying terrible, horrible deaths in a matter of weeks, seemingly out of nowhere. They were subjected to abuse in city hospitals, ignored by attendants who were too scared to enter their rooms to bathe them or deliver their food. With no legal protection, people with AIDS—or even those suspected of having AIDS—could lose their jobs or be thrown out of their homes by terrified roommates, family members, or landlords. And when they died, funeral homes often refused to take their bodies.

  The one bright spot was the response of the lesbian and gay community, including our doctors and health professionals, who banded together to create information networks and support organizations, providing care, companionship, and legal advice for people who often had nowhere else to turn.

  It was 1983 when our community first began to show up in numbers, whether volunteering for newly formed AIDS organizations, participating in public vigils, or filling Madison Square Garden for a historic AIDS benefit. People with AIDS (PWAs) also stepped forward. Refusing to be defined by their disease and rejecting the label of victim, they drafted the Denver Principles, proclaiming their rights as people living with AIDS to have a voice in all research, treatment, and policy-making decisions about the disease affecting their lives. Their empowerment movement would soon spread across the country and later set an example for people with other diseases for years to come.

  We wouldn’t really begin to understand the full scope of the AIDS crisis for several more years, at least not until 1985, when HIV, the “AIDS virus,” was identified and a test was developed. Even then, there was still more that was unknown than known.

  But that’s a story for later.

  By the end of 1983, there would be more than 3,000 reported cases of AIDS and 1,283 deaths, with 42 percent of all cases reported in New York City.

  So where does that leave Michael, James, Becky, Connor, and me? Living our lives. Looking for love. Calibrating the risks of both. Figuring out who and what is important to us, and how to become our best true selves.

  And keeping a wary eye on the gathering storm.

  Writer and activist Ron Goldberg was a member of ACT UP (AIDS Coalition to Unleash Power) from 1987 to 1995, where he helped organize many of the group’s most famous demonstrations, participated in countless zaps and actions, and served as ACT UP’s unofficial “Chant Queen.” Ron worked as research associate for filmmaker and journalist David France on his book How to Survive a Plague and enjoys speaking at high schools and colleges about the lessons and legacy of AIDS activism. Ron is currently working on a memoir about ACT UP and his life on the front lines of the AIDS crisis.

  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.

  In 2005, the Centers for Disease Control and Prevention (CDC) released guidelines for what we call post-exposure prophylaxis, or PEP (not to be confused with PrEP!). Taking the medication for twenty-eight days can significantly decrease the risk of getting HIV, though it must be taken i
mmediately, and absolutely within seventy-two hours.

  In 2012, the U.S. Food and Drug Administration (FDA) approved Truvada, a once-a-day pill, for what we call pre-exposure prophylaxis, or PrEP (not to be confused with PEP!). By taking PrEP daily, someone who is HIV-negative can reduce their risk of getting HIV sexually by up to 99 percent. Many people compare it to oral contraception or the birth control pill for women. It can also reduce the risk for people who inject drugs by more than 70 percent.

  While our understanding of the virus and the factors that lead to its spread has evolved—and less complicated and more tolerable HIV treatment and new prevention tools and strategies are available—these advances did not simply happen; they were victories won through fierce activism, which demanded justice and an aggressive government response to match the aggression of a virus likened to a plague. Many notable activist groups were formed including ACT UP (AIDS Coalition to Unleash Power), Gay Men’s Health Crisis (GMHC), and Gay Men of African Descent (GMAD) to ensure that effective and safe drug treatment options were researched, produced, and made accessible to people living with the virus.

  Faith leaders, nonprofit organizations, and politicians would later join the front lines of the AIDS movement and begin working on local and national levels to develop responses to an increasingly national and international public health crisis.

  It is thanks to the bravery of these activists that we now have more tools and resources in our fight against HIV. And thanks to that progress, we are now able to have become even more aggressive in our fight to end this disease.

  We have much more hope today. But not everything has changed.

  We still do not have a cure. Treatment will keep someone living with HIV “undetectable,” prevent the virus from being passed on, and allow someone to live a long, healthy life. But there are still many challenges to living with HIV, and treatment is not accessible everywhere in the world. A cure is still very much needed.

  We still do not have a vaccine. PrEP is a great new option, but it’s not always easy for everyone to obtain. If we want to reduce the nearly two million newly infected victims every year around the world, we need a vaccine.

  And we still have enormous stigma.

  What remains the same since 1983 is that HIV persists in communities that society and government marginalizes. Sex workers, drug users, people of trans experience, low-income communities, and people of color, particularly African Americans, are all disproportionately affected by this epidemic. Today, despite Black people being only 12 percent of the U.S. population, they account for more than 44 percent of new HIV diagnoses. Black people are more likely to die from AIDS-related complications than their white counterparts. While Latinx people in the United States account for about 18 percent of the population, they make up 26 percent of new diagnoses.

  And worldwide, one million people died in 2017 from AIDS-related illnesses.

  There is still much that needs to change; there are many fights that remain to be won.

  We must advocate for research for even better tools to end HIV. We must continue to tear down barriers that keep people from accessing the tools we have now. As we start to see a resurgence of political and social climates similar to that of 1983—where proposed cuts to HIV funding loom and attacks on LGBTQIA communities and communities of color were commonplace—we are also seeing a resurgence of activism. We must retain the lessons of those who came before us and remain true to ourselves, hold on to that seed of hope that allows us to endure a pandemic that has claimed the lives of more than thirty-five million adults, children, parents, siblings, and loved ones globally, fight for the needs of communities most affected by HIV/AIDS, and, like Michael, always choose to love.

  Jeremiah Johnson is a New York–based HIV/AIDS activist focused on policy and research advocacy to end HIV as an epidemic in the United States and around the world. He has been living with the virus since 2008; following his diagnosis he obtained a masters in public health from Columbia University in order to better advocate for the needs of people living with and vulnerable to HIV infection. He currently serves as the HIV project director at Treatment Action Group in New York City.

  Jason Walker joined VOCAL-NY as the organization’s community organizer for HIV/AIDS campaigns in February 2013 after working for the Louisville City Council. His previous activism includes working with the U.S. Student Association and the NAACP, founding the first LGBT organization for people of color in Kentucky, and fellowships with the Center for Progressive Leadership, Young People for the American Way, and the Drum Major Institute. He studied pan-African studies and cultural anthropology at the University of Louisville.

  Acknowledgments

  There are many people who left their marks on this book (and my heart) in one way or another, but two in particular deserve more gratitude than I could possibly put into words, although I’m going to take a stab at it, anyway.

  Without question, writer and ACT UP activist Ron Goldberg is at the top of this list. We might have been thrown together by David France, but I echo Ron when he says it was besherit (divine providence). Ron is the truest mench I’ve ever met, and I’m grateful on a daily basis for his outstanding memory and ability to ferret out the most obscure bits of knowledge with great joy, his tough love, honesty, delightfully wicked sense of humor, and most of all his friendship (although his ability to talk me off ledges is a darn-close second). This book would have been a very different—and much lesser—thing without his input and guidance, and so would I. Thanks for helping me finish the hat.

  My agent, Lauren MacLeod, has been a fierce and fearless source of support and brilliance. She’s a rock star of epic proportions, and I don’t know what I’d do without her. Her belief in this book when it was mostly smoke and mirrors constantly reminded me why I write. And I knew, when she told me to “throw in some more obscure ’80s music” that she got it in all the right ways.

  To the entire Sourcebooks crew: I know I tossed you a book filled with history, facts, politics, and lots of sensitive topics. And then I made it harder by writing this story in vignettes (!) with no quotation marks (!!). Thanks for loving it anyhow, and for joining me on this journey, particularly to my editor, Annie Berger; editorial assistant, Sarah Kasman; production editor, Cassie Gutman; copy editor, Christa Desir; and marketing guru, Beth Oleniczak; as well as cover artist Adams Carvalho.

  Activists Jeremiah Johnson of Treatment Action Group and Jason Walker of VOCAL-NY gave generously of their time and knowledge to create their afterword to this book, and I couldn’t be more appreciative.

  Beth Hull and Shawn Barnes championed and strengthened this manuscript in infinite ways from the beginning, and I owe them both so much wine! Thank you for much-needed feedback, encouragement, and hand-holding to: Mia Siegert, Kate Brauning, Rachel Lynn Solomon, Lisa Maxwell, Christopher Tower, Fiona McLaren, Suzanne Kamata (who I also owe for broadening my music tastes so many years ago), Carly Heath, and Carla Bartolomeo (thanks for sharing your name with Michael). Thanks also to the amazing musicians who made my 1980s so special, and to Zudfunck and John Patrick Shanley for unknowingly inspiring Becky’s Dial-a-Daze recordings.

  Special thanks to: Tom Wilinsky, my cloud’s silver lining, who stepped in when I needed it most and offered me affirmations and thankfully distracting emails along with his friendship; Tami Davis, for answering odd religious questions in the middle of the night; Emilie Richmond, for being herself; Laurin Buchanan, for all those nights at The Bank and for collective mischief; and to Laura Richards, for having my back.

  To Dr. Holly Hill, who taught me about theater, writing, and life (not necessarily in that order), I am always indebted. And, in a tragically belated note of appreciation, thank you to playwright William M. Hoffman, for taking time in 1985 to speak to a young drama critic with too many questions and probably not enough humility, about his (then) newly released AIDS play, As Is.

  To my father, Ha
rold Baker, whose devotion to staying informed in a pre-internet world resulted in him buying all of the New York newspapers on a daily basis, thank you for offering me a path to knowledge outside of our suburban town, for all the long talks, and for always being my biggest fan.

  To John and Keira: If this book is about anything at its core, it’s about love, bravery, and standing up for the things that matter most. Thank you for each demonstrating those in your own ways and for understanding how important this one is to me. I love you both more than hippopotamuses (but don’t tell the hippopotamuses!).

  Staying true to the facts and events of 1983’s New York City was something to which I held myself highly accountable, so I have to confess to moving the release date of Frankie Goes to Hollywood’s “Relax” up six months. Also, for those who go looking, while many of the settings in this book existed (and some exist still), The Echo isn’t one of them. It’s actually a mix of three clubs near to my heart (The Underground and The Bank in New York City, and Neo in Chicago, all of which have since closed).

  Like Michael, Becky, and James, I came of age in the shadow of the storm that would become the AIDS crisis and later had the great privilege to work as a consultant for the AIDS Activities Office of a state government as a grant writer and program assistant. To those I worked alongside and met in that role and throughout the journey of writing this book, I can’t thank you enough for sharing your stories and expertise. I hope I did it justice.

  To Stuart, who keeps the flame of the AIDS Memorial’s social media feeds lit, and to those who have posted their stories there, thank you for sharing your loved ones with the rest of us and for reminding us that #whatisrememberedlives. I urge every reader to follow this account and stand by my opinion that it’s the most important thing on the internet.