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I still remember asking my mother what to tell a southern relative who called to offer condolences for my brother’s death. “Just say it was cancer,” she replied with a hushed and shaky voice, hoping to escape any accurate suspicions or judgement of her first-born child, a vibrant young gay man.
My experience with my brother was in the late 1980s, and people still weren’t comfortable using the A word. It was an utterance that was interpreted by some as a mysterious disease brought to the United States by migrating Haitians. Early on it was referred to as GRID (Gay-Related Immune Deficiency, aka Gay Cancer). Later that year – in 1981 – the medical community gave it a designated name: AIDS. That was an acronym for Acquired Immune Deficiency Syndrome. In 1984 the root cause for AIDS was discovered: a retro virus aptly named the Human Immunodeficiency Virus or HIV, a virus that lead to what was then an almost certain case of full-blown AIDS and for an estimated 700,000 Americans, death.
But back in the later 1980s (and often still today), the African American community my mother is part of was less likely to acknowledge and claim this disease, that was primarily afflicting gay white men.
Black families, many with southern roots, have historically struggled to accept family and friends that were a part of the LGBTQ community. Being afflicted with a disease thought to come from sexual activity between two men was doubly stigmatizing.
Some believed it was “proof” that homosexuality was a punishable sin and spread by gay white men. For others it was purely frightening and dehumanizing. For my mother, a victim of life’s most unnatural occurrence (a parent outliving their offspring) it was the latter. Back then, I was my mother’s middle child, not her eldest.
In June of 1981, Drs. Michael S. Gottlieb, Joel D. Weisman, et al., reported five cases of gay men with Pneumocystis Carinii Pneumonia, a rare form of pneumonia usually found only in severely immunosuppressed patients. The report is published in the June 5, 1981, issue of the U.S. Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report (MMWR). By the following month the MMWR reports 26 cases of Kaposi’s Sarcoma (KS), a rare cancer, in gay men in both New York and California.
Within a year, the United States had 771 cases of AIDS reported and 618 fatalities as a result of AIDS. In addition to cases in men – particularly gay men – cases of AIDS were reported in hemophiliacs and in a few women, infants, and recipients of blood transfusions.
Transmission of an infectious agent through blood and sexual contact is strongly suspected. The Centers for Disease Control (CDC) establishes the term Acquired Immune Deficiency syndrome (AIDS) and identifies four “risk factors,” male homosexuality, intravenous drug use, Haitian origin, and Hemophilia A.
Within two years  of making its unwelcomed appearance, AIDS cases in the U.S. rose to 2,807 cases and 2,118 deaths. By 1983 AIDS cases had been reported in 33 countries. The year my brother Dennis died, 1987, he was one of 40,849 deaths of the 50,378 Americans living with HIV/AIDS.
The year 1987 also saw the introduction of Zidovudine (AZT) becoming the first anti-HIV drug approved by the Food and Drug Administration (FDA). At $10,000 for a one-year supply, AZT is the most expensive drug in history – shining a light on health care disparities based on race and social-economic background.
Simply stated, when the FDA finally came up with something the world hoped would work in putting a stop to this disease, it wasn’t accessible to the majority of the Black community, straight, gay or otherwise. It seems like just yesterday when my brother mentioned how his friend and famed photographer Robert Mapplethorpe was looking into getting him access to the drug [AZT]. Sadly, that never happened and Mapplethorpe succumbed to the disease himself two years after my brother in 1989.
Two years prior in 1987, I watched my older brother Dennis R. Speight, Jr. go from spirited Ashford and Simpson lip synching, disco floor spinning and aspiring model to a frail 29-year-old lying in a hospital bed with a stigmatizing red caution sign on his room door.
His roommate was an Asian man of about his age whose family visited often. The day I walked into their hospital room, looked past my brother’s bed to notice his roommate’s empty one – was a sobering day. It was almost as surreal as the day my brother seriously tried to call attention to long-deceased Marilyn Monroe, who he insisted was standing behind me at his bedside.
HIV-associated dementia occurs when the virus spreads to the brain. As hard as that was to take and witness, there were moments when I wished I weren’t in possession of all my mental faculties either. Maybe, just maybe, the devastation wouldn’t have been so great.
Like the month I attended one to two funerals each week and all the deceased were under 35 years old. Or the period of time when my mother began to bond and make friends with other mothers who also had “sick,” dying or dead children.
It was a time in history I hope to never revisit for anything other than eliminating it. A time I wish I didn’t recall so clearly; when we knew so little about how HIV was spread. Infected and ill individuals were routinely ostracized in private, public and professional settings.
I personally witnessed that kind of behavior from far too many health care and social service professionals. Meanwhile, traumatized patients internalized stigma and many went through what we now know were extreme and unnecessary measures to keep loved ones “safe.” For my brother, it meant never holding my first-born child (born just months before his passing) and stocking his kitchen with a few dishes, cups and cutlery items purely for his use. That was nearly 40 years ago.
Back in 1981, when it all started, so did the LGBTQ community’s mobilization efforts. Our community came together (initially with little to no support from outside entities) to help its own. One group concerned group consisted of nine friends gathered at the home of writer Larry Kramer to address “gay cancer” and raise money for research.
That meeting laid the foundation for what soon became known as Gay Men’s Health Crisis (GMHC). Within one year, GMHC sets up the world’s first AIDS hotline, creates the landmark Buddy Program to assist PWAs (People with AIDS) with their day-to-day needs and produces and distributes 50,000 free copies of its first newsletter to doctors, hospitals, clinics and the Library of Congress.
Today GMHC has lots of help in the fight against HIV/AIDS. A host of organizations (including many that speak to the intersection of race and sexuality) have joined the fight. Organizations like Black AIDS Institute (BAI) now work independently and collaboratively towards ending the AIDS crisis.
BAI was founded by three Black individuals: a gay man living with HIV, a gay doctor and a lesbian doctor. They established BAI in 1999 to mobilize and educate Black Americans about HIV/AIDS treatment and care. They envisioned an organization that directly challenged the systems of oppression that marginalize Black health and that also developed culturally specific programming to address the unique needs of Black people. With a foundation in advocacy and policy work, BAI works towards improving the health and wellness of Black people through research, community efforts, and clinical work. By and large, the face of HIV/AIDS has changed from gay white men to gay Black men and straight Black women. Organizations like BAI are addressing that disparity head on.
Thankfully, humanity has made some strides in the fight. City, state and federal agencies are on board with initiatives and campaigns while numerous health care providers have joined in delivering inclusive services with compassion and integrity. According to the CDC, as the U.S. continues to respond to COVID-19, increased investments in the Ending the HIV Epidemic in the U.S. (EHE) initiative are vital to regain momentum, advance innovation, and achieve health equity.
The EHE initiative is scaling up four science-based strategies that can end the HIV epidemic: Diagnose, Treat, Prevent, and Respond. For maximum impact, CDC is continuing to invest in communities most affected by HIV – to help local HIV programs recover, rebuild and begin to expand EHE strategies in the wake of COVID-19. The EHE initiative aims to reduce the number of new HIV infections domestically by 75 percent in five years and 90 percent by 2030.
In a recent statement acknowledging the 40th anniversary of the appearance of HIV, President Joseph Biden pledged, “To help accelerate and strengthen our efforts to end the HIV epidemic in the United States, I have requested $670 million from Congress, an increase of $267 million over previous levels, to aggressively reduce new HIV cases by increasing access to treatment, expanding the use of preexposure prophylaxis (PrEP), and ensuring equitable access to services free from stigma and discrimination.
Despite the progress we’ve made, our work is not yet finished. In honor of all those we have lost and all those living with the virus – and the selfless caregivers, advocates and loved ones who have helped carry the burden of this crisis – we must rededicate ourselves to reducing HIV infections and AIDS-related deaths. We must continue empowering researchers, scientists, and health care providers to ensure equitable access to prevention, care and treatment in every community – particularly for communities of color and the LGBTQ+ community.”
Currently, approximately 1.2 million people in the U.S. have HIV. About 13 percent of them don’t know it and need testing. Though HIV is largely an urban disease, with most cases occurring in metropolitan areas with 500,000 or more people, the South has the highest number of people living with HIV.
However, if population size is taken into account, the Northeast has the highest rate of people living with HIV. Fortunately (four decades after the first cases were discovered) free HIV testing is widely available and medications like Pre-Exposure Prophylaxis (PrEP) can be prescribed without any out of patient costs for the uninsured.
According to the latest estimates from the Centers for Disease Control and Prevention (CDC), approximately 36,800 new HIV infections occurred in the United States in 2019. Annual infections in the U.S. have been reduced by more than two-thirds since the height of the epidemic in the mid-1980s.
Further, CDC estimates of annual HIV infections in the United States show hopeful signs of progress in recent years: new HIV infections have declined eight percent from 37,800 in 2015, to 34,800 in 2019 after a period of general stability. Much of this progress was the result of larger declines among young gay and bisexual men in recent years. From 2015 to 2019, new infections among young gay and bisexual men (ages 13-24) dropped 33 percent overall, with declines in young men of all races, but African Americans and Hispanics/Latinx continue to be severely and disproportionately affected.
So here we are, 40 years later.
Magic Johnson is still alive, confirming that HIV is no longer a death sentence. Actor Billy Porter is, too, reminding us of what stigma is capable of and how much work we’ve left to do.
Those of us who are old enough to remember the height of the HIV/AIDS epidemic lost a little piece of ourselves with each loved one’s passing. But we’re still standing, like the old Ashford and Simpson song my brother used to dance around lip-syncing to, “Solid as A Rock.”
And we’re ready to explain to our children about a time in history before medication to fight, treat and prevent HIV was available, to make it a disease of the past, like Polio or Smallpox.