CW/TW: mention of multiple medical conditions; AIDS related death; homophobia; transphobia
World AIDS Day is observed annually on the 1st of December. The day is set aside to both raise awareness of public health initiatives for the prevention and treatment of HIV and AIDS and to commemorate those who have died from the disease. World AIDS Day is currently organised and hosted by the United Nations programme on HIV and AIDS (UNAIDS), in collaboration with the World Health Organisation (WHO) and other regional, national, and local health organisations. The day has been observed internationally since the first World AIDS Day in 1988.
To begin: a short explanation of some essential terminology related to HIV and AIDS. The terms mentioned below are necessary to follow along with this article and in continuing education around the topic.
HIV is the human immunodeficiency virus. It’s a virus that attacks the body’s immune system (specifically a white blood cell known as the CD4 cell) and affects a person’s ability to fight disease. HIV is a bloodborne pathogen, meaning that the most common ways to come in contact with the virus are through sexual contact, use of contaminated needles, blood transfusions from an infected person, and from a birthing parent to a child. HIV cannot be contracted through saliva, faeces, sweat, tears, urine, or any other bodily fluid and is only transmitted through significant exposure to a source of infection. HIV is often understood as a sexually transmitted infection (STI), but that is only part of the picture.
A common way to refer to someone living with HIV is to consider that person “HIV positive”, or even more colloquially, “positive.” This means that they have submitted a blood sample to test for the presence of HIV in their blood and have received a positive result (positive meaning that the virus is present in their sample). Testing will vary depending on location and availability of medical care. In many places it can be performed as part of standard STI testing. In areas with high rates of HIV infection and transmission, there are often initiatives by organisations like the WHO, Partners in Health (PIH), or local health officials to offer no cost testing and no or low cost treatment to HIV positive individuals.
If untreated, an HIV infection can develop into Acquired Immunodeficiency Syndrome (AIDS). AIDS is medically defined as a CD4 count below 200 cells per microlitre (a standard range is between 500-1500 CD4 cells per μL), or the co-occurrence of specific diseases with HIV infection such as Kaposi’s sarcoma and Burkitt’s lymphoma (among others). Essentially, HIV is the virus that causes a specific infection in the human body and AIDS is a stage of progression of the resulting disease. It’s important to note that not everyone who contracts HIV will progress to AIDS and that receiving treatment as early as possible (and prevention before exposure) is the best way to extend and increase quality of life.
The primary treatment for HIV infection is the use of antiretroviral treatment, or ART. The primary prevention methods are the use of condoms, sterile needle practices, accessible testing, and the use of pre-exposure prophylaxis (commonly known as PrEP) like Truvada. There is currently no available vaccine for HIV.
When treated, people with HIV can lead normal, healthy lives. The goal in treatment is to reduce a patient’s viral load to an undetectable level. This means that when tested, a sample of that patient’s blood will give a negative result. Unfortunately, being undetectable does not mean that the individual is “cured” as there is currently no cure for HIV infection, but it means that the individual cannot transmit the disease to another person. Once infected with HIV, a patient can expect to remain on ART for the remainder of their life.
HIV is considered an epidemic at this time. The CDC defines an epidemic as, “the occurence of more cases of disease than expected in a given area or among a specific group of people over a particular period of time.” HIV is not classified as a pandemic (think of the recent COVID-19 pandemic), because specific groups and regional areas have significantly higher cases than the rest of the world. It’s also not considered endemic (think of the flu as we currently experience it) because HIV rates are not predictable or consistent. The classification of HIV as an epidemic is most important to public health organisations, but it can also help the general public to understand that it remains a serious public health concern and does not exist in the past.
In the United States, the height of the HIV/AIDS epidemic was in the mid to late 1980’s. Partially in response to this overwhelming disease burden, World AIDS Day was first observed in 1988. James Bunn and Thomas Netter are credited as the creators of World AIDS Day. The idea was first posed in 1987, with a strong focus on remembering those who had been lost to the disease and raising awareness about the disease.
While still a problem today, the misinformation and disinformation about HIV and AIDS in the 1980s were interwoven into the public’s perception and understanding of both the disease and the causes. More on that later, but without public information campaigns and government intervention it’s likely that the HIV/AIDS epidemic would have continued to decimate vulnerable populations, especially the queer community. That intervention was only possible because of the sacrifice and tireless work of queer activists and we owe them more than we could ever know. The queer community no longer lives in the constant shadow of an unmitigated and untreatable disease because of those activists, many of whom died as a result of AIDS.
The observance date of the 1st of December has remained since its inception, even when UNAIDS took over implementation of future World AIDS Day events in 1996. While the focus and scope of the day has changed over the decades, the drive for lowering transition and improving patient outcomes has been consistent. Each year, World AIDS Day has a theme with the constant goal of lowering cases of HIV globally and continuing to remember the lives that have been lost. A complete list of all past themes can be found at the Wikipedia link in the sources.
2023 will be the 35th annual World AIDS Day. This year’s theme will be Remember and Commit. Generally, the theme is meant to be reflective, to “remember” those who have been affected by the disease, and use their memory as an impetus to commit to further progress in the areas of prevention, education, and treatment. The “commit” portion of the theme is also a call to action for individuals, to work towards ending health inequities in our communities through personal action. For more in depth information about this year’s theme, there is a link to hiv.gov in the sources that covers the theme in more detail.
With this year’s theme including a focus on remembrance, I want to provide a very brief history of the HIV/AIDS epidemic through to today, to give a sense of the scope as well as the contributing factors. As will any public health concern, those most affected are those already disenfranchised by society, with fewer access to resources or social capital.
While it’s commonly believed that HIV was not in existence before the 70s when it began to spread through the gay community, the story of the virus starts decades before. As early as the 1930s, there was transmission of Simian Immunodeficiency Virus (SIV) from primates to humans, though so called “patient zero” for this transmission has never been identified. While cases of HIV were sporadic through the mid twentieth century, the virus evolved as it was transmitted through populations until it became the disease that we are familiar with. As with any virus, HIV evolved through mutation and some strains died out while others – the more infectious – gained traction and continued their spread.
In 1980, the first clusters of (then unidentified) cases of HIV showed up in communities of gay men living in San Francisco, Los Angeles, and New York. It’s not until 1981 that the Center for Disease Control (CDC) took notice and began to investigate. Lawrence Mass was the first journalist to write about the disease. His article was posted in a gay publication: The New York Native, also in 1981. There were many theories about what the disease was, from a rare form of pneumonia to a variant of ebola, neither of which proved to be true. 1981 is also when AIDS began to be referred to as “gay cancer”, both due to the stigma surrounding homosexuality and the lack of knowledge of the virus. By the end of 1981, 130 individuals died from the disease, though it still didn’t have a name or an identified cause.
While AIDS continued to spread to multiple populations, the gay men were those who suffered the additional burden of bigotry. While the deaths of heterosexual people with the disease were considered tragic, the gay men who were sick and dying were dismissed as having done something to deserve it, whether that be “their lifestyle” or the use of poppers or even that they were being “punished by god.” Even in the earliest years of the AIDS epidemic there was no separating the disease from the cultural and social mechanisms that allowed it to spread. In 1982, the term AIDS was first proposed in medical establishments, though the causative agent was still elusive. Previously, the term Gay-Related Immune Deficiency (GRID) had been in use, so it’s unsurprising that those who knew of the disease made assumptions about its link to homosexuality.
Ryan White is often said to have “changed the face of AIDS.” He was first diagnosed in 1984. Ryan became infected from a blood transfusion, something he received often because of his haemophilia. But with the stigma surrounding AIDS and the lack of information, Ryan was kicked out of school and ostracised. He was only 13 when he was diagnosed, living with his parents in a small town in the American midwest. But Ryan was a kid, he was white, and he was straight. Because of this, he became a sort of poster child for the disease in a way that the gay men who were already dead or dying never would be. Many media outlets had refused or shied away from covering the disease until they heard about Ryan. The media used Ryan as a way to involve the public and move the focus away from solely associating AIDS with homosexuality. It worked, to a degree. But even in 2023 the stigma remains.
The assumption that AIDS was a so called “homosexual disease” wasn’t only bad for the queer community, but for everyone. Placing the blame on the majority of patient’s sexuality meant that research would be distracted, or misled, or that causation would be overlooked by personal bias. Believing that the disease was caused by homosexuality blurred the lines between causation and correlation to the point of negligence, even in professional circles. People didn’t want their careers associated with a disease so heavily stigmatised. Many doctors and other healthcare professionals would refuse patients with AIDS. If that level of bigotry had not been involved, the story of the HIV epidemic would be entirely different.
Despite the overwhelming lack of public attention, there were many researchers working to identify the cause of AIDS, each contributing pieces of the puzzle. It wasn’t until 1986 that HIV received its name. Throughout the decade the virus was identified and its mechanism understood. As with most processes, it was treated as an event, like an obvious outcome rather than a hard won milestone. There were years of study and setbacks and discoveries made by dozens of people that finally brought about the identification of the virus, but in retrospect it’s treated as an inevitability, a singular moment in time. If you read books and interviews and talk to health care providers from the time, that’s not how disease intervention worked then. That’s not how it works now. Our memory is short but the consequences are long. Even with a cause, the doctors and nurses who worked with AIDS patients were no closer to being able to offer treatment besides experimental therapy and alleviation of symptoms, and unfortunately, hospice care for those who were terminal.
Many treatments were proposed, tried, and found to either do nothing or create an entirely new set of symptoms without treating the disease. Zidovudine, more commonly known as AZT (for azidothymidine), is one of the most famous, with many early patients refusing to take it after seeing what it would do to their friends and loved ones. Others were desperate for anything that could prolong their life and would deal with the side effects, clinging to hope. Too high a dosage was the most common culprit in those who experienced extreme adverse reactions, but often medical professionals had a hard time separating what was caused by the AZT and what was caused by the virus. This lack of effective treatment would last for much longer than expected, with true breakthroughs being found in the late 1990s, and with a vaccine still elusive today.
One of the reasons that treatment was insufficient was a lack of funding and public response to the epidemic. While the public saw AIDS as “God’s punishment” or only affecting populations they didn’t care about, there was no emphasis on doing anything to alleviate the epidemic. It wasn’t until 1985 that Ronald Raegan, then president of the United States, publicly mentioned the existence of AIDS for the first time. This lack of political and societal motivation to act on the epidemic led to the development of AIDS Coalition to Unleash Power (ACT UP) in 1987, a political activist group that organised die-ins and protests for several years. If you’ve seen the famous picture of David Wojnarowicz wearing the slogan, “If I die of AIDS – forget burial – just drop my body on the steps of the FDA.” – This photo was taken at an ACT UP protest in New York City.
The mid 1980s is also when Dr. Anthony Fauci became the head of the National Institute of Allergy and Infectious Disease (NIAID). He’s previously said, “My career and identity has really been defined by HIV.” And while Dr. Fauci was widely criticised for not doing enough for the queer population and for delaying research, in retrospect he’s been partially forgiven, the acknowledgement of other factors like the federal government’s lack of interest and in some cases deliberate dismissal of the crisis keeping him from doing the work he was striving to do. In the latter parts of the decade, Fauci made intentional connections with the queer community, but for many it was too late. They’d seen too many people die from lack of attention or care.
It wasn’t until 1990 that Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act, in response to Ryan’s death. The political forces in the United States were unmoved by gay men and queer people dying en masse, but the very public illness and death of Ryan White spurred them to action, more than a decade after the queer community needed the resources.
It’s overwhelming to read the list of musicians, artists, writers, journalists, activists, and more who died from AIDS. It’s even worse to look at the statistics of how many lives have been lost to a disease that was spread as much through inaction and bigotry as through any physical means.
In the decade between 1980 and 1990, 100,000 people died from AIDS in the United States. When there’s a talking point about how the younger generations are too queer or that older generations don’t show the same statistical reporting of queer identities, it’s impossible to separate this loss of 100 thousand people from that data. Entire generations of queer people were almost wiped out.
The AIDS epidemic irredeemably changed the queer community in ways that can’t be forgotten. There’s a legacy of activism, of found family, of political action that started before the AIDS crisis, and lives on in large part because the queer community was all but abandoned to die. Gay men and transgender women were statistically the most infected populations, along with intravenous drug users. It’s not a coincidence that these same populations were already struggling with financial security, housing insecurity, and other societal failures to a larger degree than the general population. To use an oft repeated phrase: we keep each other safe. It was lesbians who often served as caretakers for the gay men in their found families. Queer doctors and nurses were sometimes the only healthcare workers willing to treat AIDS patients. Gay writers and photographers told the story of the epidemic as it unfolded because no one else would print it. The queer community was both the victim and the hero of the AIDS crisis.
Queer rights and queer liberation were well on their way in the United States by the time HIV entered the picture. The Mattachine Society was founded in 1950. The Stonewall Riots were in 1969. Harvey Milk was assassinated in 1978. There’s no way to examine the AIDS epidemic and the way it was handled by governmental and societal structures without acknowledging the tension already present between the queer community and a largely conservative Christian population in the United States. If the disease had been taken seriously and the early patients had received the proper care and attention, there’s a high likelihood that the cases we continue to see today would be significantly reduced, if not nonexistent. HIV was allowed to spread and infect with little hindrance because the primary patient population was not seen as fully human in the eyes of the law. The repercussions of that prejudice continue to affect the global community.
Since the 1990’s HIV has continued to spread and infect new populations. Currently, the virus can be found in almost all populations, with Southern Africa the primary recipient of current prevention and treatment efforts. There are new treatments available, often taken in combination, that consistently bring patients to an undetectable level. Improved and updated treatment plans are in development. PrEP is widely available in most areas of the United States and in many other countries, while funding and distribution worldwide is an ongoing process. Informational and testing campaigns are significantly destigmatised from their status at the turn of the twenty first century. With all this progress, people continue to become infected, and in some cases, die from AIDS and related complications. Concerted effort and attention is needed to bring the global community closer to the eventual goal of eradication.
The most recent available data for HIV is from 2022, so that’s what I will include here. According to the WHO, 39 million people were living with HIV at the end of 2022. Additionally, the WHO estimates that 85.6 million people have ever been infected with HIV and 40.4 million people have died from HIV globally. To put that into perspective, countries with around 40 million citizens each include Afghanistan, Poland, and Canada.
Putting the HIV epidemic into perspective by numbers can be difficult. It’s hard to humanise and contextualise a tragedy on such a scale. Due to the large number of infections and deaths, it’s likely that everyone reading this has some connection to the AIDS epidemic. For me, that initial connection was my uncle.
As a gay man from a religious family, my uncle’s life was already quite difficult before his diagnosis. I knew him as a very small child. He and his partner used to babysit me and my siblings before I was old enough to remember. Unfortunately, his presence in my life was removed and the only memories I have are from a very young age. He died of AIDS related complications in 2006. I was thirteen. No one told me he’d died even though he was with a few of our family members at the time. I found out by accident years later while I was at school doing genealogical research and came across his obituary. He died of AIDS (though his obituary is sanitised to the point of being unrecognisable), but the way he was withheld from our lives and how his death was hidden from us is what sticks with me the most. I was just a kid who loved their uncle, but it was made very clear to me how my family thought queer people, and specifically those with HIV, were to be treated.
Realising I was queer as a young person came with the added stigma of association in my immediate circle between homosexuality and HIV. Since the bigotry was spread in whispers a majority of the time, it wasn’t clear to me that it was anything besides something that gay people could expect to contract, treated as an inevitability and a punishment for being queer by the religious circles I grew up in. I didn’t learn accurate information about HIV until I studied the disease at the age of 19 in my epidemiology courses.
Each generation of queer people has a different relationship with the HIV epidemic. As a millennial, I knew it was serious but I also knew it wasn’t a death sentence any longer. I grew up in a world where there were treatments for HIV, something that hadn’t been available even five years prior. Younger queer people will see it as history, something that’s in the past for them to learn from. Older generations lived through the height of the crisis, and still carry the loss of many of their community and family members with them. The history of HIV touches all generations of queer people, but our context for understanding the AIDS crisis and the ongoing epidemic is fundamentally different.
The death sentence that came with an HIV diagnosis is in the past for most people because of improved prevention and treatment. But the epidemic can’t be relegated to history when the effects are still flowing through the queer community and with millions of people still living with the virus.
I’ve worked with people who are HIV positive. I’ve seen the struggle to access treatment, the shame they feel in sharing their status, the social stigma they still fight even though significant progress has been made. Because of my personal connection to HIV, I studied infectious disease as part of my university level education. And in that work I learned about the health disparities and social inequities that continue to fuel the ongoing HIV epidemic and several other public health concerns.
When something is out of sight, it gets ignored or pushed down the list of priorities. We – the human species – are good at responding to immediate emergencies and less good at sustained long term change. Our attention span is short but the consequences of our choices are endless. Holding an observance for World AIDS Day each year is more than just a placeholder: it keeps our attention on the crisis, even when it seems like old news and even when other tragedies grab our attention. We can’t fail the millions of people living with HIV or the millions who’ve died with it either.
Returning to the statistics I shared earlier, there are 39 million people currently living with HIV. They need the support and resources made available thanks to organisations like PIH and UNAIDS, for themselves and their communities. They deserve the same care and access as for any other health concern. The stigma around HIV is still deeply embedded in society to the extent that blood bans for “men who have sex with men” (this is a medical term actively in use) and for those who have anal intercourse of any type are still in place in some countries. The educational campaigns destigmatize the disease and are essential in slowing and eventually stopping the spread of HIV to new patients and continuing the decline of the epidemic on a global scale.
This World AIDS Day, I encourage you to do one thing that will commemorate the day. With the theme of Remember and Commit as your inspiration, spend time learning about any of the millions of people who have died from the disease: Freddie Mercury, Liberace, Rock Hudson, Perry Ellis, and so many more. Read a book like the one I’ve linked in the sources to learn more about the height of the AIDS epidemic, written as it was ongoing by someone who eventually died as a result. Research what you can do today to support the organisations like Partners in Health who are providing treatment to HIV patients where it is most needed.
However you observe this 35th World AIDS Day, I hope you take a moment to pause. Think about the millions of people that didn’t have to die from HIV and how far reaching that effect remains. Remember those who could have lived if society hadn’t been so quick to react with bigotry. Think of the culture and history that was lost because those who had the power to do something looked away. Look around and see where that continues to happen today, which groups aren’t being heard or whose voices are being silenced. Remember those we lost and commit to something concrete, no matter how small.
For resources on prevention, education, treatment, and further background information, please check the sources provided.
And The Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts