In July 1985, over 4,000 individuals gathered at Paramount Studios in California, united for a cause that had mostly remained in the shadows until then.
Their determination to march through Hollywood grew significantly after actor Rock Hudson revealed just three days prior that he had AIDS, making him the most notable public figure to admit his diagnosis.
The inaugural AIDS Walk Los Angeles raised more than $670,000, and this weekend will celebrate its 40th annual event in a dramatically changed world. While a cure still eludes us, a diagnosis that was once seen as fatal has become manageable, focusing now on enabling people to live full lives with HIV.
“In the first 15 years of this walk, being diagnosed with HIV felt like a death sentence,” noted Craig Bowers of APLA Health, which has organized the event since its beginning. At that time, the organization was known as AIDS Project Los Angeles.
“There weren’t any effective medical treatments back then,” Bowers elaborated. “Now, the advancements we have in medicine are remarkable.”
This pioneering event led to the development of similar AIDS Walks across the nation in cities like New York, San Francisco, Boston, Atlanta, Miami, Milwaukee, and Seattle. In the early years of the epidemic, these events played a crucial role in bringing attention to a disease that was often dismissed as a “gay plague,” shifting public perception and raising much-needed funds for numerous local agencies that were largely unsupported by government initiatives.
“Imagine if a pandemic like COVID occurred without any government response or accurate information,” Bowers remarked. “That was our reality. We lost an entire generation, primarily among gay men.”
According to the U.S. National Institutes of Health’s Office of AIDS Research, since the identification of AIDS in 1981, over 700,000 people in the U.S. have succumbed to AIDS-related illnesses.
Advancements Lead to Renewed Attention — and Complacency
Considerable progress has been made in addressing HIV/AIDS. Advances in medicine now allow individuals living with HIV to have life expectancies close to normal. Antiretroviral therapy can help maintain undetectable viral loads, preventing transmission of the virus to others.
In 2022, around 1.2 million individuals in the U.S. were living with HIV, as reported by the Centers for Disease Control and Prevention (CDC). However, not all are aware of their status; the CDC estimates that only 87 out of every 100 people with HIV know their condition, with the lowest awareness rates among American Indians, Alaska Natives, Native Hawaiians, Pacific Islanders, and Hispanic communities.
In 2022, the CDC also documented nearly 32,000 new HIV infections nationwide, with two-thirds of these from male-to-male sexual contact. The southern states made up around half of all new cases.
The transition of HIV from a fatal diagnosis to a manageable one is also reflected in the changing names of some events and organizations. For instance, in 2017, AIDS.gov became HIV.gov to reflect scientific advancements and the evolving nature of the epidemic, and New York’s Gay Men’s Health Crisis now simply goes by GMHC.
In Washington, D.C., AIDS Walk Washington has been rebranded as Walk + 5K to End HIV, while in California, the Palm Springs HIV Walk transitioned to the Health Equity Walk last year, along with the rebranding of its organizing group from Desert AIDS Project to DAP Health.
Current walks aim to tackle newer obstacles such as racial and economic disparities, misunderstandings, and the persistent stigma surrounding HIV/AIDS, which continue to hinder prevention and treatment efforts. Despite the significant decrease in the disease’s life-threatening reputation, organizers are finding that advancements in medicine have led to a sense of complacency and doubts about the ongoing relevance of these issues.
“In many respects, it feels like we’re back where we started, striving to capture people’s attention,” remarked Robb Reichard, executive director of Philadelphia’s AIDS Fund, which produces AIDS Walk Philly, established in 1987. “One challenge we face today is that the advancements in treatment and prevention have fostered a sense of complacency. I’ve even had someone ask me, ‘Is that still a concern?’ And the answer is yes, it is still a concern.”
Bowers mentioned that advancements have been both beneficial and challenging.
“We’ve seen incredible advancements, but many are unaware of what AIDS truly entails,” Bowers stated. “The frightening aspects that were prevalent in the past are not commonly visible now… Thanks to medical advancements, those receiving treatment can lead long and healthy lives, comparable to those without the disease. That’s incredible progress worthy of recognition. However, the fact remains that the disease is still present.”
Reframing the ‘gay plague’ narrative
The initial years were filled with secrecy, stigma, and denial, as AIDS was largely overlooked by the White House until President Ronald Reagan finally acknowledged it in 1985, four years after it was identified by healthcare professionals. Reagan first addressed the issue specifically in 1987, while more than 100,000 lives were lost to AIDS from 1981 to 1990, according to CDC statistics.
“It started as a stigmatized disease affecting the LGBTQ+ community,” remarked Michael Bronski, a Harvard University professor and author of “A Queer History of the United States.” “In the early years, people were at risk of being fired or evicted if it was suspected they had AIDS.”
The human immunodeficiency virus (HIV) targets the body’s infection-fighting cells and can lead to acquired immunodeficiency syndrome (AIDS). If untreated, it could result in rare lung infections and a severe cancer known as Kaposi’s sarcoma, characterized by dark skin lesions that proliferate as the immune system weakens.
Reagan’s shift in stance was influenced partially by actor Rock Hudson’s public announcement of his AIDS diagnosis in 1985, shortly before he passed away from AIDS-related illness at the age of 59.
Attention then turned to 13-year-old Ryan White, who contracted HIV through a blood transfusion. His return to school in Kokomo, Indiana, after treatment sparked outrage from parents and teachers, coupled with bullying from classmates, but he eventually became a symbol of hope for those affected by HIV/AIDS, receiving support from celebrities like Elton John until his death in 1990.
In November 1991, NBA superstar Magic Johnson publicly revealed he had HIV, ending his basketball career; five months later, tennis icon Arthur Ashe also announced his HIV status and became an advocate for HIV/AIDS awareness until his passing in 1993. Both figures played vital roles in raising awareness about HIV/AIDS in the African American community, which was already facing a disproportionate impact from the virus.
Bronski noted that early AIDS walks were fundamental in elevating public awareness about the crisis and shifting perceptions of HIV/AIDS as merely a gay-related issue.
“They brought the issue into the mainstream,” Bronski explained. “During the early years, there was minimal attention given to individuals living with HIV, and these walks subtly introduced gay issues to a wider audience, making it relatable.”
Bowers from APLA Health stated that the original AIDS walks can be considered an early form of mobilizing community support in response to the lack of federal action regarding the epidemic.
“This was our way of sharing our message and urging government officials to act,” he said. “It represented a community-focused effort to address the problem.”
These events, according to Bronski, were part of a larger movement to demand action, contrasting with the more radical approaches of the AIDS Coalition to Unleash Power (ACT UP), established by playwright Larry Kramer in 1987. This group employed civil disobedience and direct action to advocate for changes like expediting the approval process for drugs treating HIV/AIDS.
“In any political movement, both moderate and radical strategies are necessary,” Bronski suggested, drawing parallels to the civil rights efforts of Martin Luther King Jr. and the militant actions of the Black Panthers. “Political change rarely follows a single path. Together, these efforts gained momentum and transformed public perception.”
Ongoing Challenges
By the end of the 1990s, the introduction of protease inhibitors significantly reduced AIDS-related deaths in the U.S. Today, organizations such as APLA Health, GMHC in New York, and Charlotte’s RAIN address contemporary issues by providing housing support and food assistance to individuals living with HIV.
However, inequalities persist—not only in infection rates but also in the accessibility of quality services and medications. Long-standing factors like homelessness and poverty hinder effective treatment and healthy lifestyle choices.
As Reichard from Philadelphia’s AIDS Fund pointed out, “If someone is without housing, they are less likely to receive care and more likely to engage in risky behaviors.”
Chelsea Gulden, the CEO of Charlotte’s RAIN, established in 1992, noted that HIV infection rates continue to climb among Black men aged 20 to 40 in the Charlotte area. Feedback from community meetings reveals a reluctance within communities of color towards practices such as condom use or sharing one’s HIV status with partners.
“We’re hearing a lot of hesitation surrounding PrEP,” Gulden mentioned, referring to the pre-exposure prophylaxis that can prevent HIV infection. “There’s a lot of medical distrust, issues with access, provider biases, and significant stigma.”
Furthermore, she shared that some sections of the community have the misconception that HIV is no longer a pressing issue. Many individuals she has approached for donations believe that the existence of PrEP has resolved the problem.
“They say, ‘Everyone has PrEP now, so why should I contribute to you?’—not realizing the privilege that restricts access,” she explained. Misunderstandings about HIV/AIDS persist.
In 2021, rapper DaBaby caused outrage among HIV advocacy groups after making homophobic statements at a Miami music festival, including false claims that HIV/AIDS could lead to death within two to three weeks.
Additionally, a 2020 GLAAD survey revealed that barely half of American adults felt informed about HIV, with 60% stating it was essential to be cautious around those with HIV to prevent transmission.
Reichard has observed these misconceptions among clients at the AIDS Fund. Recently, he heard about two young men living with their mothers who were evicted upon disclosing their HIV status.
One was newly diagnosed and was kicked out after his mother found out, while the other had lived with his mom for a long time but got evicted when a new roommate refused to share common spaces with him.
“I wish I could say things have improved, but when it comes to the average person, we continue to confront stigma,” Reichard remarked. “Many still hesitate to discuss their status with sexual partners. We’ve made progress in HIV treatment, but there remains much to be done regarding the treatment of people living with HIV.”
Walks as Symbols of ‘Resistance and Hope’
Despite medical advances in combating HIV/AIDS, participation in AIDS walks has declined. This year’s AIDS Walk Charlotte in May attracted around 800 attendees, raising over $170,000 for RAIN, which is only about half of the peak attendance numbers from 15 years ago.
Nathan Smith, RAIN’s vice president of philanthropy, attributes the decline to fatigue among supporters.
“When we began, there weren’t many walks. Now we are competing against numerous other events for attention,” he said.
However, for many organizations, the annual walk serves as a crucial platform to raise awareness.
“People rarely engage with us outside of the walk,” Bowers shared. “This event is a chance to educate others about the current state of the disease and its impact. Although we’ve made strides, there’s still much work to accomplish.”
Reichard echoed this, noting that walk participants play an essential role in raising awareness through their fundraising and team activities as they share their reasons for joining.
While the AIDS Fund has seen an increase in participation among younger individuals, Reichard observed that they often lack the financial means or connections that older supporters possess, which can hinder fundraising efforts.
“Some of our top fundraisers have lost brothers or sons, but each subsequent year, fewer of them are able to take part,” he noted.
AIDS walk participants reflect on the significant effects these events have made over time.
Thom Medrano, development coordinator at GMHC in New York, which organizes AIDS Walk New York, noted that besides the active participation from LGBTQ and corporate crowds, the attendees who’ve consistently brought together large teams and donors play a crucial role.
“The AIDS Walk represents a symbol of resistance, commemoration, and optimism,” Medrano mentioned. “We’ve worked to enhance understanding of HIV and combat stigma. I take great pride in our achievements.”
Reichard expressed that assessing the true influence of AIDS Walk Philly, which has collected over $19 million so far, is quite challenging.
“Our main focus has always been individuals living with HIV and efforts to prevent HIV,” he explained. “From this viewpoint, the effect on people’s lives is incalculable – it’s uncertain if someone avoided HIV due to our prevention initiatives. The walk provides valuable media exposure and discussion opportunities regarding treatments and prevention, which wouldn’t be possible without it.”
