The Forgotten Fighters of the AIDS Epidemic

AIDS took no prisoners. It continues to be an unforgiving and heartless condition; stealing the lives of thousands of people from all walks of life every year, but still primarily from within the gay community. When HIV reared its ugly head in the early 80s it did its best to destroy anyone it touched. Were it not for the fortitude and bravery of the men and women who refused to bow before at a time when society often looked the other way out of intolerance and fear our world today might be a very, very different place.

There are numerous quotes about history that question the human ability to learn from our past experiences so that we may avoid making the same mistakes in the hope to make change for the better.

The AIDS epidemic is now in its third decade. There is still no cure and people are still dying. While the manner in which individuals, communities and countries have responded has indeed changed, we find ourselves on a precipice in 2018. After a decade of steady decrease, HIV rates are on the rise again, and shifts in political ideologies, healthcare funding and prevention strategies are creating the conditions that could allow AIDS to make an unwelcome comeback.

So, the question must be asked: What have we learned over the past 30 years and will that insight allow us to make things better?

In order to answer that question, we first need to understand the history of HIV and AIDS in North America.

When AIDS first reared its ugly head in the early 80s, it did its best to destroy anyone it touched. It was unforgiving and heartless condition; stealing the lives of thousands upon thousands of people from all walks of life every year, but in North America, it was particularly devastating to gay communities. Were it not for the fortitude and bravery of the men and women who refused to bow before at a time when society often looked the other way out of intolerance and fear, our world today might be a very, very different place.

June 5 is HIV Long-Term Survivors Day in the United States. It was on this day in 1981 that the Center for Disease Control first isolated and identified what would eventually become known as AIDS and the event itself was created in 2014 to celebrate and honor those individuals living with HIV, many of whom were told not to expect to live.

For many, it’s also a day of reflection filled with many emotions — sadness, grief, anger, guilt, love and forgiveness, and an opportunity to reflect on how much attitudes, care and policies about HIV and AIDS has changed since that time.

In those early days, an HIV diagnosis was synonymous with a death sentence. People living with it were met with fear, bigotry, the frequent denial of health services and often their basic human rights. That the majority of infections in North America were diagnosed among gay men, men who have sex with men and IV drug users, was not inconsequential to how North America would respond, both in terms of public policy and public opinion.

Before the term AIDS was first used in 1982, media referred to it as G.R.I.D – Gay Related Immune Deficiency. This early moniker contributed to a response that quickly became less focused on treatment and prevention and more about morality and a certain set of partisan values.

It was common for people to victim blame, suggesting that those infected got what they deserved. Evangelist Jerry Falwell was quoted as saying “AIDS is the wrath of God upon homosexuals.” Ronald Reagan infamously never uttered the word “AIDS” until 1987. By then, more than 36,000 Americans had been diagnosed with AIDS and almost 21,000 had died.

During Reagan’s administration, public health policies, education and care standards simply did not exist and it was not seen as a priority. As such, many people were placed at risk for HIV infection, and those already infected were placed at significant risk for developing a serious and often fatal opportunistic infection such as candida, cryptococcosis, Kaposi’s sarcoma, pneumocystis pneumonia, lymphoma and toxoplasmosis of the brain.

IV and AIDS was absolutely devastating. Large sections of entire generations died. Many gay men lost their entire social networks. Lesbians created makeshift care teams, becoming nurses for their gay male friends, many of whom had been abandoned by their families and denied health care.

At the height of the crisis, Pride parades across North America became walking memorials. Gay publications in major cities featured pages upon pages of obituaries and death announcements. Simply put, the gay community was under siege with grief during those first 15 years of the epidemic.

But like the events at the Stonewall Inn just a decade earlier, the AIDS crisis was also a pivotal point of action for the gay community. From grief and persecution came resiliency and pride.

In many cities with large gay populations, among them San Francisco, New York, Boston, Philadelphia, Washington and Toronto, community memorials were built. Perhaps the most significant of these memorials is the AIDS Memorial Quilt. Originally conceived by Cleve Jones in 1985, a group of volunteers started the Quilt project in 1987 as a way to remember the lives of their friends and lovers. The idea was a simple one — people were invited to create a panel with the name of a loved one they have lost to AIDS and submit it to The Names Project, which would add it to the Quilt. Sadly, it didn’t take long for the Quilt to grow. The visual impact was powerful and cathartic, but also terrifying.

On October 11, 1987, the Quilt was displayed for the first time on the National Mall in Washington, D.C., during the National March on Washington for Lesbian and Gay Rights. In less than a year, it had already grown to 1,920 panels. It is estimated that half a million people visited the Quilt that weekend. To this day, the quilt remains a strong and poignant reminder. There are now more than 48,000 individual panels and about 14 million people have visited the Quilt at displays around the world.

The early days of the AIDS crisis also led to the creation of advocacy and service organizations like AIDS Coalition to Unleash Power (ACT UP), the Gay Men’s Health Crisis (GMHC) and AIDS Action Now, which in turn led to strong grassroots community organizing, the introduction of targeted education and prevention campaigns and platforms for authors, artists and advocates to make noise.

A key individual and noisemaker during that time was Larry Kramer, who rose to prominence for his founding roles with both GMHC and ACT UP, as well as for writing numerous (and often controversial) plays that were among the first to include HIV/AIDS as a primary theme. Perhaps his best-known work is The Normal Heart, a largely autobiographical story he wrote in 1985. Set between 1981 and 1984, it tells to story of an outspoken and militant writer and activist who forms an HIV advocacy group, only to be ousted from the group by other founding members who feel his tactics are hurting the cause.

It’s considered by many to be his most seminal work and reflects his own experience with GMHC. But beneath the political intrigue, was a story about a group of friends and lovers who were absolutely scared to death about what was happening around them and didn’t have any place to turn. They had been abandoned by their families, their workplaces and their government and were fighting for their lives. For many gay men at the time, to see a story like this performed on a stage was simply a radical act.

Another seminal work that emerged during this time was Randy Shiltz’s And The Band Played On: Politics, People and the AIDS Epidemic. The book takes an in-depth and chronological look at the discovery and spread of HIV and AIDS, with much attention paid to the lack of government involvement, the infighting between research organizations as to who really discovered HIV, grassroots uprising and ultimately, the personal and complex relationships between men who were under attack. To this day, the book remains one of the most well-researched and multi-faceted documentation of AIDS in North America. So significant was its influence that HBO turned into a film in 1993.