The Evolution of an Epidemic
Where did we start? How far have we come? And where should we be going?
The early origins of the HIV/AIDS epidemic were filled with misconceptions, fear, and death. In 1981, a mysterious immune deficiency among gay men was reported in over 270 cases throughout the United States. Due to a lack of precedence or knowledge of the new disease, the immune deficiency was initially called Gay-Related Immune Deficiency (or GRID) by several researchers. This targeted nomenclature of the prognosis laid the foundation for early perceptions about this disease by leading the public to believe that this immune deficiency was limited to gay men. Although the CDC later changed the terminology to AIDS (Acquired Immune Deficiency Syndrome), the stigma that began with GRID would remain intact for decades to come. This negative perception of the disease was further evoked when the CDC announced that needle sharing and injections were causing transmission. By the early-to-mid 1980’s, HIV/AIDS was viewed as a disease related to behaviors that at the time were seen as deviant by mainstream society (such as homosexuality, drug use, and infidelity). This stigma, combined with the lack of scientific understanding of the disease, left those infected feeling helpless, lifeless, and outcast.
Three years later, researchers at the National Cancer Institute announced that they had found the cause of AIDS — a retrovirus that was labeled HTLV-III, which was later referred to as HIV (Human Immunodeficiency Virus). They believed their discovery would lead to an HIV vaccine within two years. Although this was not the case, the information was utilized to create and license the first commercial blood test for HIV, called ELISA. However, even with better understanding of the disease, stigma and social misunderstanding remained. There were reported cases of children being refused entry to school, individuals losing their jobs, and families being broken apart because of the negative views around the disease and the fear of transmission. Then, in 1985, actor Rock Hudson died from an AIDS-related illness. He was the first major celebrity to acknowledge he had AIDS, and his death resulted in a minor turning point for public perceptions of the disease.
The fight against AIDS epidemic was primarily driven by grassroots, activist movements that took place in many places across the country, but was especially concentrated in cities like New York and San Francisco. Institutional change was necessary to make an impact in fighting the epidemic, but many of the necessary institutions were slow in their response. Groups like ACT UP were critical in pressuring these institutions into eventually taking the steps necessary to abate the crisis.
And after these activist movements took hold, over time, many institutes arose to address the lack of social and scientific understanding of HIV/AIDS. Upon Hudson’s death, he left $250,000 dollars to help set up the American Foundation for AIDS Research. Just a few years later, the World Health Organization launched “The Global Program on AIDS.” The goals of the program were to raise awareness about the disease, formulate policy, provide support to countries, initiate research, and most importantly, to defend the rights of those living with HIV. And eventually, due to immense pressure and efforts amongst the aforementioned activist groups, in 1987, the growing awareness and support for research resulted in the first antiretroviral drug, Zidovudine (AZT). This was the first medication administered to help those living with HIV by lowering the amount of virus in their system and thus preventing HIV from developing into AIDS.
In 1988, Elizabeth Glaser emerged as a visible public figure in the AIDS community as an advocate for fighting against mother-to-child transmission of AIDS, a reality many were not necessarily aware of at the time. Glaser started the Pediatric AIDS Foundation (now known as the Elizabeth Glaser Pediatric AIDS Foundation, a current beneficiary of UCLA’s Pediatric AIDS Coalition), which advocated for research into the care and treatment needs of children. They brought hope to children and families affected by HIV/AIDS. The work of these organizations, along with many others of this time, led to a drastic increase in scientific advancements, as well as progress in public education.
In the early 1990s, while science was advancing and testing methods were improving and becoming more available, the epidemic was still at an all time high. In 1994, AIDS became the leading cause of death for all Americans between the ages of 25–44. That was until the emergence of a newfound medical treatment: highly active antiretroviral therapy (HAART). These new drugs presented a glimpse of hope for those infected with HIV and their results were profound. For the first time since the beginning of the AIDS epidemic, there was a decline in the number of new AIDS cases diagnosed in 1996. New medications began to arise in the years following. Each presented different and increased benefits, including lowered costs and consumption frequencies. But the fight against AIDS wasn’t over. The stigma that lingered around the disease remained, there was no grasp on a potential cure, and therapy treatments were still not able to allow individuals to lead a normal lifestyle.
The following decade resulted in the emergence of a variety of HIV/AIDS focused organizations both locally and internationally. In 2003, President George W. Bush announced the creation of the United States President’s Emergency Plan for AIDS Relief (PEPFAR), which was a $15 Billion, 5-year plan to combat AIDS in countries highly burdened by the disease. PEPFAR has been instrumental in alleviating the suffering of those infected by HIV across the world, and its impact continues to have an effect across the globe today. Many cite PEPFAR as one of the most successful examples of foreign aid in fighting a disease. Many more influential figures arose to address misconceptions about the virus and worked as advocates on behalf of those affected by the disease. Over time, this increased attention to the virus resulted in medical advancements that allowed those who were HIV-positive to live more normal lifestyles. HIV stopped being seen as a death sentence, testing was widely available, and medications were continually improving.
These incredible advancements, however, have caused many to mistakenly believe that the AIDS epidemic is over. There are currently 37 million people living with HIV/AIDS, and this number continues to grow. Every day, roughly 400 babies are born HIV positive, although this transmission is 100% preventable. Scientists predicted to have a vaccine produced by 1986, yet over 20 years later there is still no vaccine and no cure. Those infected by the disease can take medication to drop their viral load to undetectable amounts, allowing them to live normal lives without fear of transmitting the disease. Yet HIV positive individuals still live in fear of people knowing their status. Science has come so far, but science alone is not enough. The end of this epidemic will not come until there is an end to the stigma. People are often afraid to know their status and get the medication they need, so many continue to unknowingly transmit HIV. Others know their status but are naturally and rationally fearful of the stigma in their communities, and cannot disclose their status. Transmission is preventable, but only if an environment is created in which people have access to treatment. This can be achieved by an increase in resources and the elimination of stigma so people can know and disclose their status without fear of physical or social harm. We have come so far in this battle against HIV/AIDS, but it isn’t over. The only way this epidemic can come to an end is through public acceptance and understanding of this disease and through the dissolution of the outdated stigma associated with HIV/AIDS.
Written by Kelsey O’Donoghue, member of the Cause Education Committee of the Pediatric AIDS Coalition at UCLA
