As one of several Indian Health Service activities supported by the Minority HIV/AIDS Fund (MHAF) in Fiscal Year 2020, the Urban Indian Health Institute (UIHI) is currently leading a project focused on creating culturally attuned HIV education materials—including print, digital, and video formats—for both American Indian and Alaska Native patients and the healthcare providers who serve them.
UIHI , located in Seattle, Washington, works to provide information to and assist urban Indian-serving organizations to better the urban Indian community’s health nationwide. Seven out of 10 American Indians and Alaska Natives currently live in urban settings away from federally defined tribal lands. Since 2016, UIHI has led several projects that promote culturally attuned HIV prevention and treatment.
Among the new materials being developed under this project, in March 2020, UIHI released a short film, Positively Native , in which long-time HIV survivors Bill Hall (Tlingit), Shana Cozad (Kiowa), and Hamen Ides (Lummi) discuss their lived experiences with HIV stigma, discrimination, and advocacy. Along with the film, UIHI released an accompanying toolkit that includes a facilitator’s guide, discussion questions, and a presentation on the basics of HIV. The organization presented Positively Native to an audience of 38 people at the International Indigenous Pre-Conference on HIV/AIDS in July 2020.
The history of HIV/AIDS is a long and complicated one. There are many conflicting details in its story, and each life touched by the virus has a complicated and beautiful story of their own. In this synopsis, we have tried our best to highlight the most crucial parts of the story of HIV in America, understanding that this is a near-impossible task. HIV stands out from many diseases, because today we are still without a cure—but also, perhaps more importantly, because the AIDS pandemic is now embedded into the histories and cultures of queer people, people of color, creative communities, and dozens of fringe and subculture groups; AIDS has become part of our own personal histories.
Scientists suggest that traces of HIV date as far back as 1931 in the Democratic Republic of Congo. Before the 1980s, researchers estimate that about 100,000 to 300,000 people contracted HIV around the world.
In 1969, a Black teenager in St. Louis named Robert Rayford died of an illness that baffled his doctors. Officially, his death was the result of pneumonia. Robert Rayford, also known as “Robbie” or “Bobbie,” was said to have been shy and socially awkward and possibly had a cognitive disability. Little is known about the young man’s life. His doctors have stated that Rayford often avoided or refused to share much information about his life or family; however, it has been suggested that he contracted an HIV-like virus through sexual assault. Nineteen years later, in 1988, molecular biologists at Tulane University in New Orleans tested samples of his frozen tissue and found evidence of HIV, although the lack of 100% certainty of these test results is still talked about in the scientific and public health communities. Still, Robert Rayford is often remembered as the first known case and fatality of HIV-1 in the United States.
Many people in the LGBT community and health care workers anecdotally say they were beginning to see people die mysteriously in the 1970s, from what they now believe were HIV-related illnesses. But it was on June 5, 1981, that the Centers for Disease Control and Prevention (CDC) noted in its Morbidity and Mortality Weekly Report the appearance of a rare pneumonia in five young gay men in Los Angeles. Additionally, the men, all of whom would die, showed compromised immune systems. Across the country, a New York dermatologist tipped the CDC to a baffling spate of cases of an aggressive cancer called Kaposi’s sarcoma. Each of these cases appeared in gay men. Newspapers and other media outlets began to report about a “gay men’s pneumonia” and “possible gay cancer.” Headlines across the United States and, shortly thereafter, the world, claimed a new “Gay Cancer” was responsible for the otherwise uncertain cause of death of multiple gay and bisexual men. At the close of 1981, there were 270 reported cases of severe immune deficiency among gay men, and 121 of them had already died. Uncertainty lead to fear in queer communities; acknowledgement and, therefore, action were almost nonexistent in mainstream culture and communities.
By the end of 1984, AIDS had already ravaged the United States for a few years, affecting at least 7,700 people and killing more than 3,500. Scientists had identified the cause of AIDS—HIV—and the U.S. Centers for Disease Control and Prevention (CDC) identified all of its major transmission routes.
Yet, U.S. leaders had remained largely silent and unresponsive to the health emergency. And it wasn’t until September 1985, four years after the crisis began, that President Ronald Reagan first publicly mentioned AIDS.
But by then, AIDS was already a full-blown epidemic.
HIV originated in 1920 in Kinshasa, Democratic Republic of Congo. It spread to Haiti and the Caribbean before jumping to New York City around 1970 and California within the decade.
Health officials first became aware of AIDS in the summer of 1981. Young and otherwise healthy gay men in Los Angeles and New York began getting sick and dying of unusual illnesses normally associated with people with weakened immune systems.
It didn’t take long for fear of the “gay plague” to spread quickly among the gay community. Beyond the mortal danger from the disease, they also dealt with potentially being “outed” as homosexual if they had AIDS or an illness resembling it.
In fall 1982, the CDC described the disease as AIDS for the first time. Despite the growing cases and a new name, news outlets struggled with the disease, or at least how to cover it—some even shied away from giving it too much attention. Though the New York Times initially reported on the mysterious illnesses in July 1981, it would take almost two years before the prestigious paper gave AIDS front-page space on May 25, 1983. By that time, almost 600 people had died from it.
David W. Dunlap, a reporter in the Metro section at the time, told the New York Times Style Magazine: “There were strong messages that you got that were not written on any whiteboard. You knew to avoid it. It was a self-reinforcing edict: Don’t write about queers.”
Dr. Anthony Fauci said Tuesday the visibility LGBTQ people brought to themselves during the height of the HIV/AIDS epidemic helped change the tide for public perception.
Fauci made the remarks during the daily White House Coronavirus Task Force briefing when responding to COVID-19’s disproportionate impact on black Americans, saying the disease has “shed a light” on health disparities in the United States much like HIV/AIDS did with LGBTQ people.
“During that time, there was extraordinary stigma, particularly against the gay community,” Fauci said. “And it was only when the world realized how the gay community responded to this outbreak with incredible courage and dignity and strength and activism — I think that really changed some of the stigma against the gay community, very much so.”
Biomedical advances against HIV since the dawn of the epidemic have been nothing short of astonishing. An almost always fatal disease is now, for those with the privilege of access to treatment, a manageable chronic illness, treated with a single daily pill. A person who acquires HIV today has every reason to expect to live a normal life span.
Yet with such astonishing success in treatment, why is HIV stigma worse today than ever before? Why do so many long-term survivors, including many who were exceptionally open about their HIV-positive status for years, find they must now keep it a secret, sometimes going deeply into closets they thought they had left for good years ago?
Many people—especially those who do not have HIV—find these questions startling. That’s because they remember the days when one had to wear a spacesuit to visit a person with AIDS in a hospital or was afraid to eat in a restaurant with gay waiters or refused to touch a person they thought might have the virus.
Black people make up 12 percent of Pennsylvania’s population of about 12.8 million people. But they accounted for 49 percent of HIV diagnoses in 2018 — and to Rep. Brian Sims that’s “racist as hell.”
“A racist system produces a racist result. You don’t need to look at the data to know that,” Sims, D-Philadelphia, said Wednesday, adding, “If medicine only reaches people who look like me, in a state that doesn’t look like me, we’re doing something wrong.”
Jeannine Peterson, CEO of Harrisburg’s Hamilton Health Center, speaks during a Capitol press conference on Wednesday, 2/5/2019 (Capital-Star photo by John L. Micek)
Sims, one of two openly gay House members, was one of several lawmakers and public health advocates who were on hand during a Capitol press conference Wednesday for the 21st annual observation of National Black HIV/AIDS Awareness Day in Pennsylvania.
National Black HIV/AIDS Awareness Day (NBHAAD) is February 7. NBHAAD is a day to increase awareness about HIV among blacks/African Americans and encourage people to get involved in prevention efforts, get tested, and get treatment if they have HIV.
HIV diagnoses have fallen in recent years among black/African American women (25% decline from 2010 to 2016) and heterosexual men (26% decline). Diagnoses among young black/African American gay and bisexual men (aged 13 to 24) decreased 5%. This good news shows that the nation’s HIV prevention efforts are helping reduce HIV infections among some blacks/African Americans.
Although the latest data show progress, we must continue our efforts. In 2017, nearly 17,000 blacks/African Americans received a new HIV diagnosis. Blacks/African Americans accounted for 43% of all HIV diagnoses in the United States and 6 dependent areas,** despite making up 13% of the U.S. population. Also, from 2010 to 2016, HIV diagnoses increased 40% among black/African American gay and bisexual men aged 25-34.
This year NBHAAD’s theme, Together for Love: Stop HIV Stigma, focuses on our shared responsibility for taking actions to help end HIV stigma—negative attitudes or beliefs about people with HIV. Stigma affects the emotional well-being and mental health of people who have HIV and can keep people from getting tested and treated for HIV. Ending HIV stigma is critical to reducing new HIV infections among African Americans and helping African Americans with HIV stay healthy.
On NBHAAD, help us make progress to reduce HIV among African Americans by fighting stigma and promoting HIV testing, prevention, and treatment. Eventually we can get to no new HIV infections if we work together.
Both relationship-specific and structural factors influence whether coupled gay men living in New York City choose to use pre- and post-exposure prophylaxis (PrEP/PEP) for HIV prevention. Some men – particularly those in monogamous relationships – felt that discussing PrEP and PEP in the context of a relationship could threaten the relationship by raising issues of trust, while others felt that it had the potential to enhance sexual health and satisfaction.
Stigma from the gay community and healthcare providers around promiscuity also presented barriers to PrEP uptake. This qualitative research was conducted by Stephen Bosco, Dr Tyrel Starks and colleagues at City University New York and published in the Journal of Homosexuality.
Gay and bisexual men accounted for 66% of all new HIV diagnoses in the US in 2017. It is estimated that 35-68% of these infections happen within the context of a long-term relationship. This indicates that coupled gay men have the potential to benefit significantly from biomedical prevention strategies, such as PrEP (taken on an ongoing basis) and PEP (taken shortly after a suspected infection). However, only 7% of the potential 1.1 million gay and bisexual men who could benefit from PrEP were prescribed it in 2016. Black and minority men in the US remain most at-risk for HIV infection, while also having the lowest rates of PrEP uptake.
Imagine a couple. Let’s call them Todd and Carl. They love one another like crazy and continue to be amazed at how much they have in common.
They work out together at the same gym, enjoy watching the same nerdy, sci-fi and fantasy series on Netflix, and share a love for Japanese and Korean food. They seemed to effortlessly merge their groups of friends when they got together and share the same values when it comes to working hard and building their careers.
Although neither has popped the question yet, they’re likely heading toward marriage somewhere down the line. They love, trust and support each other. Oh, and the sex? The sex is mind-blowing. It helps that Todd’s around 20% top and 80% bottom and Carl’s the opposite. They just click. They make that ridiculously cute couple that others envy.
Sounds good, right?
Except it never happened. Despite both catching each other’s attention on an app, Todd and Carl never went for that first date. They never made it to the bedroom stage, let alone realize that they both shared a dream of adopting a kid and trekking across South America one day. See, Todd stated on his profile that he’s HIV positive. And when he messaged Carl, he wasn’t rude, but he simply responded, “Sorry, not quite what I’m looking for.”
And with that, a relationship that would have changed both their lives disappeared into the ether. Mr Right was pushed right back out of the door.
Stigma did not create AIDS. Yet it prepared the way and speeded its ravaging course through America and the world. First stigma delayed understanding of the disease: it’s a gay cancer, it’s a punishment from God, they brought it on themselves, so who cares? Then stigma delayed government action, research, and assistance for the sick and dying. Stigma made people afraid to get tested for HIV and treated. Stigma made people ashamed, isolating and alienating them from friends and family. Stigma cost people jobs, professional standing, housing, a seat on an airplane or in a dentist’s chair. Stigma made many afraid to live, and want to die. But then it began to make some brave people very angry and AIDS activism was born. The activists quickly realized that to end AIDS we must end stigma.
AIDS activism did more to fight the stigma on being gay or having AIDS than any other social force. In this way, AIDS activism, like the civil rights movement, became a great moral movement of our time, defending the innocent, restoring dignity to the violated, giving hope to the desperate, and reviving faith in the disillusioned. AIDS activism gave LGBT people courage, dignity, and power they had never held before. It inspired many to stand up and proudly proclaim who they are and who they love. Twenty-six of the world’s most advanced countries now recognize gay marriage and today a gay man openly married to another man is a prominent candidate for President of the United States.