New HIV cases rise in New York despite long-term advances in control of AIDS epidemic

The AIDS epidemic was raging when Pamela Biafora was diagnosed with HIV in 1986.

The fear from the diagnosis, which she learned of after donating blood, was almost paralyzing. In the 1980s, a person diagnosed with AIDS was living an average of three years, according to the National Institutes of Health.

Biafora, then 24, didn't consistently follow medical protocol until she was in her 40s and it was almost too late, she said. Now 61, she has not only beat the odds but is spreading the message that an HIV diagnosis is not a death sentence.

"You can certainly have it under control and live your life like it's not even there," said the Middle Island resident, who has become a trained advocate for HIV patients. Medication has made the virus undetectable in her body, she said.

Biafora is not alone. A recently released 2023 HIV/AIDS Surveillance report shows an increase in people living with HIV across the state: 105,447 last year compared to 104,124 in 2022. 

In 2023, 3,686 people across the state were newly diagnosed with HIV and AIDS compared to 3,515 the year prior. 

That increase is at odds with a more than decadelong downward trend in new cases before 2023. The state report found that compared to 2011, new HIV diagnoses across the state dropped 37% to 2,517 in 2023.

The recent rise could in part be attributed to increased testing, said Dr. Joseph McGowan, medical director of Northwell Health's HIV service.

"We’re picking up some of those people who were infected in previous years, which is good," McGowan said. The increase could also show that more people being diagnosed are surviving longer. 

"They're staying with us, so they stay in the denominator," he added. 

On Long Island, the number of people getting diagnosed with HIV remained relatively flat in 2023, compared to 2022.

In 2023, 170 people were diagnosed with HIV and concurrent HIV and AIDS — meaning HIV that changed to AIDS in a short period — in Nassau and Suffolk counties, compared to 169 in 2022, not including incarcerated people. This is a jump from 2021, when there were 145 such cases, according to the 2022 state surveillance report.

McGowan said other research found there are an estimated 500 people with HIV living on Long Island who don’t even know it, so continued outreach and testing is key.

The 2023 HIV/AIDS Surveillance report also found that statewide, the rates of new HIV diagnoses in Black and Hispanic people populations were "7.1 and 4.8 times higher, respectively, than the rates for non-Hispanic white individuals."

Cadence Acquaviva, a spokeswoman for the state Department of Health, said: "While the number of people newly diagnosed with HIV in New York State has fallen to historic lows since its peak in the mid-1990s, inequities still persist. ... Addressing persistent health inequities, the social determinants of health and racial disparities remains the center of our focus as we move forward."

Biafora, who works part-time for a Coram medical group, said she tries to help people who are at high risk of contracting the virus be less fearful about seeking help. 

"The more we talk about it, the less it becomes stigmatizing. And that's what we need to achieve so that those who have questions or concerns can feel comfortable enough to talk to somebody about it and hopefully get them in the right direction," Biafora said.

According to McGowan, prior data that has remained fairly consistent shows most HIV and AIDS cases have been concentrated in areas like Freeport, Hempstead and Westbury in Nassau, while in Suffolk, more cases are seen in towns including Bay Shore, Brentwood and Huntington Station, he said.

Kerry Thomas, executive director of Thursday's Child, a Patchogue-based advocacy group, said focusing on those areas could help improve the statistics. 

"I think it's so important to serve communities that are historically underserved, because we're seeing the real effect of that by the prevalence in those communities," Thomas said.

Use of pre-exposure prophylaxis medication, known as PrEP, which greatly reduces the risk of contracting HIV through sex, is also lower in higher-risk populations, according to McGowan.

"We have to do a better job at reaching people who are in need of PrEP, educating them, making it available. That will help us to prevent further infections," McGowan said.

McGowan said despite the recent rise in new cases, generally there have been significant advances in controlling the epidemic. But, he said, there is still more work to do.

"This effort has achieved this success of bending the curve, of bringing this epidemic into its, I hope, final stages. But we cannot take our eye off the ball," McGowan said.