What The Hell America!

In 1989, Ronald Johnson did not think he would live to see old age. Johnson, a Black gay man, was diagnosed with HIV that year, during the height of the U.S. AIDS epidemic, when the life expectancy was 1 to 2 years after diagnosis.

“I just assumed that I would die,” Johnson told The 19th. “I’m from New York City, and particularly before treatments, I was seeing friends and people I know dying. Then going into the ’90s when treatments became available, and there was the struggle to get access to the treatment, dealing with managing the regimen of treatment: the number of pills that you had to take, some had to be refrigerated, some had to be taken before meals, some taken with meals. It was a challenge.”

Over the course of his career as a respected advocate and policy expert, Johnson watched activists and researchers fight for treatments and prevention efforts so that he and others could live long, happy lives. With modern treatments, a person living with HIV now has a similar life expectancy as someone who does not have HIV.

Thirty-six years after Johnson’s HIV diagnosis, on the afternoon of his 77th birthday, he spoke with The 19th about a new threat that he fears will disrupt those decades of progress — and could hit older LGBTQ+ people the hardest: federal cuts across a range of health equity and social safety net programs, particularly in HIV services under the Department of Health and Human Services.  

The National Institutes of Health has reportedly canceled hundreds of active grants funding research on HIV and AIDS, according to the science journal Nature. Last week, thousands of employees at the Centers for Disease Control and Prevention were fired or put on administrative leave. This includes those working in HIV prevention and treatment like Dr. Jonathan Mermin, the director of the National Center for HIV, Viral Hepatitis, STD, and TB Prevention.

Among its responsibilities, the center monitors HIV transmission trends, conducts research on prevention strategies, publishes guidance on medications for pre- and post- exposure to HIV and funds community-based prevention and treatment organizations. The CDC cuts are part of a broader push by President Donald Trump’s administration that also includes possible cuts to Medicaid and the elimination of the Administration for Community Living, which funds services to help aging people and those with disabilities live independently in their communities versus being housed in institutions. 

Advocates say that the cumulative loss of services will be devastating for older people living with HIV, a disproportionate number of whom are LGBTQ+. About 54 percent of people living with HIV in the United States are ages 50 and older. By 2030, researchers estimate that this proportion will increase to 70 percent of those living with HIV. In 2021, this age group represented 16 percent of new HIV diagnoses in the country. 

“In general, most people don’t think about older people and sexuality or sexual health,” said Terri Wilder, the HIV/aging policy advocate at Sage, a national organization focused on older LGBTQ+ people. “We’re very concerned that people are going to acquire HIV. Some people are not going to be connected to care. They may not have access to a test to find out if they have HIV, and by the time they find out, they might be so sick and ill that they may be very vulnerable to death.”

Older LGBTQ+ people with HIV sit at the intersection of multiple marginalized identities. Older people and queer people generally are both at higher risk of receiving improper or discriminatory medical care. They also face challenges with housing insecurity and financial instability that can worsen with the costs of medical treatments. 

These factors can converge with remaining HIV stigma and inconsistent access to education, prevention and treatment efforts, which create barriers to identifying HIV and receiving care soon after exposure to the virus. In 2021, an estimated 34 percent of people aged 55 and older in the United States were also diagnosed with AIDS, or late-stage HIV, according to CDC data. 

“I think with increasing age, we also tend to see a decline in the immune systems associated with aging. And so when you’re combining age-associated decline with HIV, then we see a more rapid declining immune system function, like with an earlier progression to AIDS,” said Kristine Erlandson, a professor with the University of Colorado School of Medicine’s division of infectious diseases.

Beyond the education and prevention work, older people with HIV have other considerations. As people age with HIV, many experience conditions like high blood pressure, diabetes, bone frailty or heart disease at younger ages than expected, Erlandson said. This has raised questions about whether providers need to be testing for and treating these other conditions more aggressively at an earlier age for people with HIV.

Federal agencies like the CDC play a key role in HIV prevention and treatment. The National Institutes of Health runs clinical trials used for vaccine development, the Health Resources and Services Administration’s Ryan White Program provides funding for HIV clinics, especially for uninsured or low-income people. The CDC was the first federal agency to monitor the HIV epidemic in the 1980s, and it continues to fund community work and maintain important geographic data that can show if a particular state or region of the country is experiencing an outbreak.

Though people over the age of 50 have been overlooked in HIV prevention and treatment work broadly, advocates made strides in recent years to bring more attention to their needs. In 2024, a new rule designated people living with HIV and LGBTQ+ people as populations of “greatest social need” under the Older Americans Act. The law was initially passed in 1965 to fund a network of programs and services aimed at addressing a range of needs, including caregiving, transportation and nutrition.

As a result of the updated rule, states “need to specifically account for the ways in which they are addressing the needs of these populations. So it’s a way for the feds to essentially make sure that these populations are given the care and attention that they need, regardless of whether you live in Oklahoma or Massachusetts,” said Kae Greenberg, a staff attorney at the Center for HIV Law and Policy.

Authorization for the Older Americans Act expired in September. In December, the Senate passed a measure for reauthorization, but the House did not vote on the bill before the end of the congressional session. Last year, Wilder from Sage and other advocates were also close to changing the CDC’s HIV screening guidelines, which currently recommends providers offer tests to people between the ages of 13 and 64. Wilder said removing the upper age limit would support testing for older people.

The current political climate has created stress and anxiety for older people living with HIV who are left with the uncertainty of what services and medical coverage they have access to, Johnson said.

During Trump’s first term he praised scientific breakthroughs in prevention work and promised to end the HIV epidemic by 2030. Johnson — who spent years working on AIDS policy locally in New York City and at national organizations — said it’s unclear what kind of progress, if any, will continue to address these concerns during the new administration. 

“I am very, very upset over what has been taking place in the past few weeks and what is taking place every day,” Johnson said. “The infrastructure of care, prevention and research that has developed over the 40-plus years of this epidemic is virtually being eliminated or drastically reduced to the point that the progress that we have made, and the impact of that progress on people’s lives — the saving of lives — is being threatened.”