Over the last 40 years, the human immunodeficiency virus (HIV) & acquired immunodeficiency syndrome (AIDS) epidemic has had a lasting impact on the healthcare system, social norms and the LGBTQIA+ community within the U.S. In the early 1980s, the Centers for Disease Control and Prevention (CDC) developed a task force whose main focus was to study Kaposi sarcoma and other “opportunistic infections.” Kaposi sarcoma was described as a rare cancer that causes tissue growth in the skin, lymph nodes and other organs. Later on, medical experts would eventually link Kaposi sarcoma to AIDS. In the media at the time, Kaposi sarcoma was referred to as “gay cancer.”
At the time, preconceived biases surrounding the epidemic and gay men led to a powerful stigma around AIDS. People with the virus were subject to social ostracization and discrimination, leading to them being evicted from their apartments, fired from their jobs and even shunned by their loved ones. In 1981, Bobbi Campbell, a native Washingtonian, became the first person in the U.S. with Kaposi sarcoma to go public with his diagnosis and open up about his struggles, by writing a newspaper column where he detailed his fight to survive the virus. He became a powerhouse activist for patients up until his death in 1984.
Speculation surrounding the disease continued and increased as cases grew to plague the public health system. In 1981, it was reported that there were 270 cases and 121 deaths, and experts started to notice a common denominator among gay men.
A year later in 1982, the CDC began to use the term AIDS for the first time and began to define a diagnosis. The following year, the CDC first reported cases of female patients with AIDS. That same year, the CDC made several developments surrounding the virus, one major announcement being that drug injections were the leading cause of transmission of the virus at the time. The U.S. Congress would pass legislation funding AIDS research and treatment to deal with the ongoing health crisis.
In October 1986, the CDC reported that AIDS cases were disproportionately affecting African American and Latin American children, who made up approximately 90% of perinatally acquired AIDS cases at the time.
Though the government was eventually pressured by activism and a rapidly growing death toll as a result of HIV and AIDS, the epidemic was severely under-researched and misunderstood due to the stigma surrounding homosexuality. The American Psychiatric Association had only recently removed homosexuality from its list of mental disorders in 1973. Former President Ronald Reagan didn’t publicly acknowledge the AIDS crisis until 1985. The Helms Amendment, adopted by the U.S. Congress from 1987 to 1988, banned any funds from being put toward AIDS prevention and education on the grounds that such efforts would “condone” homosexual sex. The queer community felt the AIDS epidemic was another clear signal that the government did not care whether they lived or died. A common notion at the time was that HIV & AIDS was targeting the “right people.”
Grassroots organizations such as ACT UP protested government inaction, using social demonstrations to draw attention to the ongoing crisis and combating misinformation surrounding AIDS & HIV. ACT UP held the 1987 social demonstration on Wall Street (the first of many), and demanded that the FDA allow for the release of accessible, life-saving drugs and public education on the spread of the disease. The unrelenting demands and work of activists were incredibly influential in drawing attention to the epidemic, and was one of the major factors that led to government action.
In 1995, 500,000 cases of AIDS were reported in the U.S.
Since then, significant progress has been made in the prevention, care and treatment of the virus. Legal policies have been instituted to protect patient rights and AIDS-related deaths have decreased by 69% since 2004.
Lily, who asked to only be referred to by her first name, works as a nurse in the Greater Seattle Area. As a healthcare worker, Lily addressed how societal attitudes surrounding HIV & AIDS have improved since the 80s but new problems have arisen or gotten worse.
“I think sexual contact is still stigmatized in society, HIV & AIDS are often associated with sexual activity. This is one of the biggest challenges around people talking openly about AIDS,” Lily said.
Current and future healthcare workers have observed the progress over the course of time.
Kayla Kitrell is a second-year psychology major at the University of Washington and an undergraduate research assistant at the University of Washington Medical Center. Kitrell reflected on the stigmas HIV & AIDS patients faced in the past and still present day.
“A lot of factors can contribute to the health of a person and if someone is receiving biased treatment by healthcare faculty that is unacceptable in my opinion,” Kitrell said.
Kitrell mentioned how despite the progress made, there is a lot more to be done to combat the existing stigma.
“A lot of people still believe that HIV & AIDS is a ‘lifestyle disease’ meaning that only gay people get it, which is completely false,” Kitrell said.
Kamari Colburn is a second-year nursing student at Prairie View A&M University. Colburn believes that there has been a tremendous amount of progress made towards reducing the stigma around HIV & AIDS since 1982.
Colburn detailed how the healthcare system has incorporated HIV & AIDS into the curriculum for prospective and future employees.
“At my school freshman year we had to go to informational seminars at the beginning of the year and one of the seminars happened to be about STD awareness and prevention. Instead of scaring us about HIV & AIDS, the organization made the seminar a safe and educational lecture on how to get tested for HIV and what to do if you have it,” Colburn said.
Colburn criticized how the epidemic was regarded and dealt with in the past by healthcare officials.
“Back in the beginning of the AIDS crisis, education was very scarce. Because of how fast the disease grew, many healthcare workers did not know how to treat or look for symptoms of AIDS and HIV diagnosis,” Colburn explained.
Colburn agrees with Kitrell that there is still a lot of progress to be made and that the current stigma still poses a significant challenge to combating epidemics over time.
“I think that the biggest challenge that remains in changing attitudes toward HIV & AIDS is the judgment and the religious barriers that people have towards these diseases. As mentioned in a previous question, family members close to me have said insensitive things about people with HIV & AIDS because of a religious standpoint,” Colburn said.
Over the last few decades, advancements in research, reform in the healthcare system and changing attitudes have helped to challenge the stigma surrounding HIV & AIDS, but there is still work to be done, and the lasting effects of the epidemic still impact the queer community. It is vital to remain aware of how prejudice and discrimination can drive government inaction, and how social resistance can help protect marginalized people.
