June 5 was HIV Long-Term Survivors Day in the U.S. This year’s event marked two significant milestones: First, it was on this date in 1981 that what would eventually become known as AIDS was identified by the Centers For Disease Control. Second, it’s the 21st anniversary of anti-HIV therapies being available in the United States and Canada.
This event was created in 2014 to celebrate and honor those individuals living with HIV, many of whom were told not to expect to live. It’s also an example of just how much the narrative about HIV and AIDS has changed since it first emerged as a major public health concern in 1981.
In those early days, getting diagnosed with HIV was synonymous with a death sentence. People living with it were met with fear, bigotry and 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 on treatment and prevention but rather more about morality and 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.
For gay communities across North America, the impact of HIV 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 make-shift memorials and 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. Community memorials were built, community-based AIDS service and advocacy organizations formed.
Survivors took to the streets, and pressured their elected officials to demand better services for those living with and affected by HIV, for more inclusive and responsive policies, and for more resources and attention to develop treatments and a cure.
The efforts led to significant advancements worth celebrating. HIV diagnoses have been steadily declining across North America. From 2008 to 2014, the estimated number of annual HIV infections declined 18% in the U.S.
The number of deaths related to complications with HIV have also declined.
In 1995 there were almost 42,000 deaths in the U.S., making it the leading death of people between the ages of 25 to 44. In 2014, the U.S. recorded only 6,700 deaths due to HIV.
People with HIV are living longer, healthier and full lives. A recent study based on analyzing records in the NA-ACCORD database predicted that a newly diagnosed 20-year-old could expect to live until around 70 providing they begin anti-HIV promptly.
Both Canada and the U.S. have implemented policies and laws designed to protect people with HIV from experiencing discrimination, persecution and harassment and it is not at all uncommon for HIV to be referred to as a chronic and manageable condition.
There remain challenges, though. Since the beginning of the epidemic, more than 700,000 Americans and Canadians have died from AIDS-related complications and there are still an estimated 1.2 million people in North America living with HIV. Globally, women and children are most affected.
In North America, men who have sex with men are still the leading group. Despite the fact that new infection rates have stabilized, there has been noted increases among African Americans, who accounted for 45% of new infections last year. It is also estimated that more than half of young people between the ages of 13 and 24 who have HIV are not even aware they have it.
People are still testing positive for HIV and sadly, people are still dying from complications related to it. Prevention efforts and access to affordable treatments remain a necessary response that North Americans must continue to press for in order to end the epidemic.