Beginning with an HIV diagnosis in 1990, Ivy Arce’s story spun into over three decades of activism, now unyielding in her demand for a cure.

A cisgender straight Chinese American woman, Arce saw a poster on a New York City subway about women getting tested that convinced her to test. Following her positive diagnosis, she leaned on the city’s major HIV/AIDS advocacy group ACT UP NY, where she found community and reliable resources like Dr. Joseph Sonnabend, a force and pioneer, having become one of the first doctors to treat patients for the disease in 1977.

“For me, a cure is not a project,” she said. “Without having survival, I can’t work with any equities.”

Human Immunodeficiency Virus (HIV) is a virus that harms the CD4 white blood cells in the immune system, making it hard for the body to fight against illnesses, infections and diseases. HIV is considered a sexually transmitted disease or infection and disproportionately impacted the LGBTQ community considering HIV transmission was 18 times higher in anal sex than from receptive vaginal sex.

When left untreated, HIV can cause Acquired Immunodeficiency Syndrome (AIDS), a chronic and potentially life-threatening stage of the infection. In the early developments of HIV/AIDS research, Sonnabend co-founded the People With AIDS (PWA) Health Group in 1987, and Arce became part of its Women’s Treatment Group and Pediatric Working Group, where women with AIDS mobilized to demand access to medication and clinical trials.

Clinical trials is a form of medical research that studies and evaluates new treatments and tests and their effects on people. Clinical trials require people to volunteer, allowing researchers to see real-time impact on an urgent or ongoing health crisis. According to Arce, the quickness of recent vaccine rollouts COVID-19 and mpox can be credited to the work of HIV/AIDS organizing that mobilized the use of clinical trials.

“It was HIV and AIDS that changed that,” Arce said. But where does HIV/AIDS care stand today, and what direction is it headed towards?

How HIV/AIDS organizing brought lifelong major medical shifts for the better

Despite the horrors of the disease, what came out of the crisis and epidemic established a permanent impact that benefits everyone to this day.

The first reported case of HIV was found in 1981, when the CDC reported a rare case of lung disease amongst five previously healthy gay men in Los Angeles, Calif. By the time the report was published, two were already dead. In just nine years, over 100,000 people died from HIV/AIDS, according to the CDC’s calculations.

Though initially dubbed as the “white gay disease,” Black queer men were reported to be more significantly impacted only halfway through the 80s. And yet, the lack of government intervention to the deadly disease contributed even more to the stigma attached to HIV, AIDS and the queer community at large.

“The crisis of mass death in the face of such hostility to queer people, poor people, drug users and sex workers really meant people had to fight terribly hard for the federal government to respond,” said Kenyon Farrow, an HIV activist and communications director of AVAC, a nonprofit organization working with equity in biomedical prevention.

Farrow adds that part of the HIV/AIDS epidemic’s significance was that it became a movement to call for universal health care, decriminalization of queer sex and gender expression.

Additionally, doctor-patient relationships like Arce and Sonnabend’s highlighted a larger community need for public access to health information. Arce says that doctors like Sonnabend and queer artists like Michael Callen and Richard Berkowitz—authors of “How to Have Sex in an Epidemic”—mobilized for patients to negotiate their care such as having access to blood work results.

“Back then, a lot of the research material was kept within the medical community when in reality we always had journalistic access to it,” Arce said, adding that nobody exercised this right in the 90s. ACT UP then sued the government for access to trials. “Nobody would second guess that today, but back then, nobody did that. And when I say, back then, [I mean] nobody did that for any disease.”

In addition to changing the landscape of clinical trials, ACT UP even contributed to changing the very access to clinical trials, which Arce described at the time to be far away, slow and limited. In hindsight, the HIV/AIDS epidemic and the mobilization of community members established a potentiality for better, safer and timelier health advocacy.

As a result, the National Institutes of Health (NIH) created clinical trials on site to get hundreds of more blood work results and a greater sense of community amongst patients.

“When you’re dying in rows like this and you realize that the systems are not just old, but they’re ridiculous, [you see that] there’s so much opportunity to work through different options,” she said.

Because HIV/AIDS and its close ties to the LGBTQ community, disclosure of HIV/AIDS status can lead to outings of closeted queer, trans and nonbinary people. As a result, HIV/AIDS advocacy also led to what is now known as the Health Information Portability and Accountability Act (HIPAA) policy in health centers.

In and outside of the U.S.—particularly in Africa— AVAC has been supporting the training of community laypeople to be able to be advocates for ethical clinical trials occurring in their countries. AVAC has also been advocating with various countries’ ministers of health and at the global level, with entities like World Health Organization (WHO), to accelerate access to biomedical prevention in the Global South.

“I think our role in translating science and its implications for laypeople globally has been a really important contribution to social justice in research and public health program development and implementation,” Farrow said.

How long term HIV/AIDS care is stumped by money and power

Taking a glance at HIV/AIDS care today, community members are seeking for people in positions of power and with capital to help continue carrying the burden many queer and trans people have taken on themselves.

In the South, specifically in North Carolina, advocates today like Chelsea Gulden, CEO and president of Regional AIDS Interfaith Network (RAIN) are still working to fight rampant stigma, medical mistrust and overall racism in the state.

Gulden, who is bisexual and was diagnosed with HIV in 2003, started working in HIV/AIDS advocacy in 2004, and therefore has been on both sides of provider and care recipient for two decades. Aside from the fact that North Carolina was a leading state in 2017 in the now-nationwide movement to ban trans people from restrooms and other public spaces, Gulden sees LGBTQ members with HIV/AIDS suffering more.

“Incarcerated people are negatively impacted by HIV or bear a higher burden of HIV disease that tends to have legislation that negatively impacts our work and our ability to make progress within those groups,” she said, explaining that when people are released, they are given only 30 days’ worth of medication and a sheet of resources without real coordination between the Department of Corrections (DOC) and Ending the HIV Epidemic (EHE).

Arce also believes money is an issue—especially for those who profit from sales of medication.

“Just one pill from my regimen for HIV is $30,000 a year,” said Arce, who described it as unsustainable. “That is not sustainable. “If pharmaceuticals know the formula, they can self-certify and they can break patent. I mean, obviously the pharmaceuticals hate that, but they’re able to get it for pennies.”

When it comes to cost, the onus, according to Farrow, is on the government.

“We should be embarrassed in the richest nation in the world to have so many people who still don’t get regularly tested for HIV,” he said. Farrow also says that his friends and colleagues living with HIV in the U.S. still struggle to navigate their health care through the Ryan White HIV/AIDS program or are simply still discriminated against in health care settings without enough community members organizing to improve the systems of care.

“In the U.S., I think the floor is every state expanding Medicaid—which has been proven to reduce new HIV diagnoses. But the ceiling is really a single-payer system that just gives everyone comprehensive, high-quality health care.”