HIV/AIDS: What Can We Learn From America's Last Epidemic?

The United States is still grappling with the COVID-19 crisis and its fallout, including some of the highest unemployment rates on record and nationwide threats of homelessness for people unable to pay their rent or mortgages.

Yet another devastating health crisis still exists.

Recent developments in treatment and therapy have shifted this infection for some from an acute, often deadly, diagnosis to a chronic and manageable condition, but unequal access and other forms of social and economic inequality still allow this viral infection to ravage certain populations.

If you haven’t already guessed, the infection in question is the Human Immunodeficiency Virus, or HIV.

In order to better understand our present circumstances, let’s look back in time -- actually that could pretty much be the Origin of Everything channel motto.

By following the legacies of action (and inaction!)

regarding HIV/AIDS, we’ll be able to see how the US handled its last major epidemic and how this response informs our approach to COVID-19 today.

Before we take a closer look at the disparities and the legacy of HIV/AIDS, it’s important to understand what HIV is (and isn’t!).

HIV is a subset of retroviruses that attack human immune cells, which can leave people living with HIV more susceptible to other infections.

When left untreated, HIV can replicate such that certain white blood cells or “T cells” are so depleted that the body can’t fight off other infections.

If a person’s T-cell count dips under a certain number, they begin suffering from the symptoms of Autoimmune Deficiency Syndrome, or AIDS.

Nowadays scientific consensus around HIV transmission is solid in scientific, medical, and public health communities as well as the wider public.

But this wasn’t always the case, but more on that later.

HIV is transmitted through exchange of bodily fluids, mostly through unprotected sexual contact, exchange of non-sterilized hypodermic needles, and earlier on in the epidemic, HIV-infected blood transfusions.

Though less likely, HIV can be transmitted through oral contact, but only if a person has an open sore or wound in their mouth that would let fluids directly in contact with their bloodstream.

Saliva will not transmit HIV.

So now let’s look at its history.

Before it could be named or even the means of transmission could be studied, doctors began noticing a large uptick of gay men who were previously healthy becoming increasingly sick, presenting symptoms of otherwise rare opportunistic infections, including Pneumocystis pneumonia and Kaposi’s sarcoma, a rare cancer.

In these early stages of the epidemic, infection without treatment led to advanced stages of the disease and eventually death.

Many in the community considered it a death sentence and watched as friends, neighbors, and lovers succumbed to these rare infections.

Medical and scientific communities were baffled.

What’s worse, this mysterious disease negatively impacted a highly stigmatized demographic—self-identified gay men and men who have sex with men—so early media coverage coined the disease Gay-Related Immune Deficiency, or GRID.

Other names like ‘gay cancer’ and ‘the gay plague’ became common names for this deadly infection.

In 1982, only a year after the increased incidence of infection and deaths, the US Centers for Disease Control coined the term the 4H’s to highlight how its officials believed that Homosexuals, Heroin Injection Drug Users, Haitians, and Hemophiliacs posed the greatest risk of transmission.

The emphasis on Haitians as likely carriers has been ascribed to political motives and backlash against the possibility of Haitian refugees finding asylum in the United States in the early 1980s.

In 1983, two research groups discovered that different strains of retroviruses were responsible for this disease.

Eventually, the understanding that this epidemic was not an exclusively ‘gay’ disease caused a change in naming conventions by the scientific and medical communities, designating the advanced stages of untreated HIV infection as AIDS.

Despite the renaming, the association of HIV/AIDS with gay men and the accompanying homophobia, disdain for heroin injection drug users, and fears of the unknown remained.

In When AIDS Was Funny taped audio footage relays the chilling reaction of President Ronald Reagan’s press secretary, Larry Speakes, to the crisis.

From 1982-1984, Speakes met reporter Lester Kinsolving’s questions about the growing AIDS epidemic with homophobic jokes while fellow press corps members simply laughed.

This reaction was not exceptional, implicitly representing the Reagan Administration’s opinion of the AIDS crisis and the gay population at the time.

Reagan didn’t publicly discuss AIDS until 1985, after 5,000 people, mostly gay men, had already died.

People who contracted HIV had not just been ignored by the Administration, they were also sometimes shunned by members of their close networks of friends, family, and wider communities.

From the beginning of the epidemic, individuals in directly-impacted communities were organizing among themselves to care for the dying.

Despite the fear of contracting the disease, people committed to acts and gestures of care and compassion for people dying of AIDS-related complications.

In the early years of the epidemic, many healthcare providers feared the new disease and were openly homophobic, refusing to care for the sick and dying.

Some AIDS patients, who had been abandoned by their families, had to find new caregivers such as friends and lovers from these same marginalized populations.

They supported many of these patients who were for the first time facing the knowledge that they were dying.

Nurses were the first healthcare professionals to take on the role of caregivers and treatment providers in large numbers, like in 1983 at the San Francisco General Hospital, where nurses helped Ward 5B become the first ward dedicated to AIDS patients.

By the late 1980’s, activists’ anger had boiled over onto the national stage.

Caregivers and those directly impacted by this disease sought political movement, which took them from the bed sides to the streets.

Worldwide infections were estimated to be between five and ten million people while over 40,000 people had died in the United States alone.

Originally conceived in 1985 and ultimately started in 1987, activists started the NAMES Project AIDS Memorial Quilt consisting of three by six foot panels, the size of an average grave, to represent the deceased and mourn those who died or were in the process of dying.

Given the slow and sometimes outright lack of response, activists participated in political organizing, direct action, and advocacy.

One of the most well-known groups to arise from this crisis was the AIDS Coalition to Unleash Power or ACT UP.

Originally started in New York City in March 1987, this group used a number of tactics to build momentum in the name of treatment and medical research.

Like the sit-ins of the Civil Rights era, these groups would occupy spaces and hold demonstrations because official political channels met their pleas with resistance.

In May 1990, hundreds of members from local chapters stormed the National Institutes of Health campus, targeting specifically the National Institutes of Allergy and Infectious Disease and its director at the time, Dr. Anthony Fauci.

(Yes, that Dr. Anthony Fauci!)

The year 1995 represented the zenith of the epidemic and with the widespread use of Highly Active Antiviral Therapy, in 1997 the CDC indicated that the number of AIDS deaths had fallen for the first time.

These legacies of HIV/AIDS, care, and political action have coalesced to create present conditions.

For some, the early 1980s to the mid-1990s bracket the beginning and end of the AIDS epidemic, and in many ways the exponential growth of sickness and deaths has ebbed.

But not for all.

New medical breakthroughs like HAART and other regimens are more available but are also expensive and inaccessible for many who cannot afford the high prices of these medications.

This inaccessibility extends to Treatment-as-Prevention, which reduces the likelihood of transmitting HIV, and Pre-Exposure Prophylaxis (or PrEP), which reduces the risk of contracting HIV if exposed.

In 2018, African Americans made up 42% of new diagnoses in the US, with an overwhelming majority of transmission occurring due to male-to-male sexual contact for Black men and heterosexual contact for Black women.

For Black men who have sex with men, the risk of contracting HIV is one in two versus white men who have sex with men, who have a 1 in 11 chance.

And that’s despite Black men having fewer lifetime sex partners and being just as likely to participate in ‘risk behaviors’ such as unprotected sex.

We know that African Americans in the US are a genetically diverse group of people from a wide range of diasporas, so this disparity is unlikely to be attributed to some genetic vulnerability.

And blaming these communities’ susceptibility to HIV on behavioral attitudes or practices has been heavily criticized by public health experts, practitioners, and researchers.

Much like the transmission of HIV, African American and indigenous communities are carrying much of the burdens of COVID-19 and its negative effects on physical, mental, and economic health and the highest rates of sickness and death.

Recently, the CDC has pointed to factors that may increase the risk that vulnerable populations might contract COVID-19 and even die from the disease.

These factors include housing precarity, wealth & wage disparities, gaps in healthcare access & utilization and generalized discrimination.

Unsurprisingly, these factors also increase the risk of HIV transmission and death of AIDS-related complications.

Prisons across the US, already disproportionately holding impoverished Black and brown people, have become hotspots for the transmission of COVID-19 and HIV.

Patterns of discrimination based on class, gender, and race exacerbate these vulnerabilities.

In-group racism and class segregation among gay men keep rates of transmission high within tightly-knit and disadvantaged networks.

According to activist Peter Staley, ACT UP’s membership consisted of 80% white gay men and lesbians.

So with the diminishing urgent political need to address HIV/AIDS moving out of these communities, local chapters of ACT UP and their political actions dissipated.

Inside Black communities, political scientist Cathy Cohen has observed a pattern of “advanced marginalization,” where political groups and community leaders often eschewed issues concerning HIV/AIDS during the AIDS crisis in fear that stigmatized individuals would come to represent whole communities, undermining what little political leverage or power these communities possessed.

But people have the political will to survive.

Groups like the Minority AIDS Coalition and ACT UP Philly and organizations like the Black AIDS Institute continue to fight for access, treatment, and better conditions for minorities and vulnerable populations now living with HIV now.

Before the COVID-19 crisis, groups would provide educational materials about HIV/AIDS and prophylactics at ballroom competitions and clubs, spaces where anthropologist Jafari Allen notes Black Queer people can “get our lives (and protect our lives and those of our friends, family and children).” ACT UP Philly has even turned its attention to the COVID-19 crisis, staging a funeral procession with a hearse that stopped in front of a local official’s house to protest a homeless man’s COVID-19-related death in May 2020.

So in times of health crises like these, history can tell us something about how others have survived, through mass political action, community outreach, and even individual gestures of kindness.