Thirty years ago this month, the CDC released a report documenting the first cases of what we now know as the acquired immune deficiency syndrome, or AIDS. Unfortunately, the news was not heard or understood by the millions AIDS would touch. In this the 30th year of the HIV/AIDS epidemic, much has changed. AIDS activists are still heralding the goals set out in America’s first National HIV/AIDS Strategy released last year by President Barack Obama. They are also applauding the mounting recent evidence that pre- and post-exposure prophylaxis treatments for men who have sex with men, as well as earlier use of antiretroviral drugs by HIV infected persons, may reduce new HIV incidence rates. But most of the world has been fixated instead on other news this year, a wedding and a funeral—commemorations that mark the beginning and end. If only we could also include a reunion in this 30th year of HIV/AIDS, we might better understand how far we have come since the beginning of the epidemic and how far we still have to go to reach its end.
The wedding of Prince William to Kate Middleton had cast over it the shadow of Princess Diana, who is remembered by AIDS activists for embracing the infected people of the global HIV/AIDS epidemic. She held the dark-skinned bodies of dying African women and children as well as the skeletal hands of terminally sick gay men. Elizabeth Taylor, who died this year at age 79, will remain forever an icon to AIDS activists for embracing and never leaving not only Rock Hudson but also the legions of gay men whose lives she brightened and tried to save with her tireless philanthropy. Their compassion, like their beauty, never seems to fade, and their faces still grace the news. Each time their photos appear, our hearts and minds are reunited with them.
Princess Diana’s wedding to Prince Charles was 30 years ago on the very day I, along with thousands of other newly graduated lawyers across the United States, took the dreaded bar exam. We all arose early that day and saw on the morning news glimpses of Diana’s frightened face and long bridal train as we, like she, headed to our fate. Each time I see her wedding photos I recall my own fears from 30 years ago. My fears were not just about the bar exam, but about a dreaded disease called GRIDS (gay-related immune deficiency syndrome) which we soon came to know as HIV/AIDS. Indeed, as a long-time survivor living with the virus, my early days as a lawyer and as an openly gay man are inextricably linked with HIV/AIDS.
Having missed my big 25th law school class reunion 5 years ago, I committed to being on the committee to commemorate our 30th. The event was held at the Waldorf Hotel in New York City, a place which would have been a likely setting for a dinner with Liz or Diana. The reunion was a small and intimate affair. After cocktails and mushroom tarts, filet and mousse, our reunion chairman asked for a moment of silence to remember our law school classmates who had died over the past 30 years. As we heard their names, our minds recalled their youthful faces, like those perpetual images we constantly see of Diana and Liz. The dozen people my class has lost over the past 30 years included a once closeted gay man who lived in my dorm and a more openly gay man with a clarion tenor voice and huge smile. My classmates and I sat at our tables in silence and were reunited in our heads with each of those lost friends. Most of us attending this 30th reunion were not present at the funerals of our deceased members. I wondered whether any of those departed who were cut down before their prime were lucky enough to have weddings of their own. The gay men who died most probably did not.
At reunions, we look eagerly for the faces of friends we have not seen, and we are thrilled when we hear a familiar voice say, “I’m so glad you are here.” We forgive those long lost friends for not including us in their weddings, or birthday or anniversary celebrations; instead we remember with them the trials and triumphs of the past—the tests we passed, the songs we danced to, the dreams we shared, the hopes we thought would never die.
Thirty years of HIV/AIDS count more than 500,000 Americans dead from the disease. If only we could have a reunion with them. Gay men who are now of a certain age, find it sometimes too hard to recount the names of friends and loves we have lost. We once prepared their funerals and memorial services, planned with the precision of royal weddings. We chose the music, the flowers, and the food with great care and affection, seeing to every detail, including who would be invited and who would sit where. Lovers and partners and significant others had the privilege of sitting on the front row pews at those services in full view of family members who we feared would never understand how much we longed to have had the chance to stand before the altar with our beloved now dead and exchange vows with them, rather than gathered before that altar weeping to their eulogies.
In this 30th year of HIV/AIDS, terms from 30 years ago like “GRIDS,” “ARC,” and the dreaded “full blown” are not even memories for most of those who are becoming infected today. At my 30th law school reunion, the new dean introduced a current law student who was not even born when Diana wed Charles or when Liz helped bury her Rock. That young person has no recollection of the terror terms like “GRIDS,” “ARC,” and “full blown” once brought. For those of us who do remember, those words meant the end was near. How lucky we are to be alive 30 years later, when today’s terms of PEP and PrEP (pre- and post-exposure prophylaxis) and ARVs (antiretroviral therapies), can mean that the end might stay far, far away. But these new treatments do not mean that HIV/AIDS is over. Far from it. The waiting lists of would be ADAP (AIDS Drug Assistance Program) recipients and the 56,000 Americans who will be infected this year, not to mention the persistent stigma surrounding the disease, should remind us that even today the hope of the present is not true for all. If only everyone could remember the faces and anguish of the past, would there be less complacency, risks, and fear or more compassion, interest, and funding for the programs needed to reach the goals in our new National HIV/AIDS Strategy?
When Liz Taylor received the Kennedy Center Honor, the Gay Men’s Chorus of Washington, DC, sang a tribute to her. When the curtain rose on the tuxedoed choir, each man was wearing a red ribbon. Liz leapt to her feet and wept. How many faces from HIV/AIDS past did she imagine seeing among those black suited men? What reunions did she long for? What voices did she hear?
In this 30th year of HIV/AIDS, pause to remember those lives we have lost. The voices we no longer hear. The friends we long to see. We will not have a reunion with them until our days, like theirs, are ended.
Liz and Diana are now with the hundreds and millions whose lives they fought to save. Their reunion with them was surely glorious. If only in this 30th year we could all have a reunion with those we have lost to HIV/AIDS. What messages would they say to us? What testimonies would they offer? What lessons would they give? Surely, their messages to people of all backgrounds and persuasions, their testimonies to policymakers and to funders, and their lessons for the young and the old alike would be fabulously fierce and unforgettable. If only we could hear them.
If only they were here.
Jesse Milan, Jr., JD has been living with HIV for 29 years. He is vice president and director of Community Health Systems at Altarum Institute and chair emeritus of the Black AIDS Institute.
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