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Long Island saw 17% increase in new HIV cases in 2021, state study finds

Brooke Parker displays an HIV testing kit in Charleston, W.Va. amid one of the nation's highest spikes of HIV cases.
John Raby
Brooke Parker displays an HIV testing kit in Charleston, W.Va. amid one of the nation's highest spikes of HIV cases.

New HIV cases on Long Island rose nearly 17% in 2021, the region with the highest increase in the state outside of New York City, according to the latestHIV/AIDS Surveillance report issued by the Department of Health on the eve of World AIDS Day, which every year falls on Dec. 1.

Over the past decade, the number of new HIV cases in New York has been nearly cut in half. But many health care facilities being closed in 2020 due to the COVID-19 pandemic might be to blame for the uptick in cases last year.

“People were reluctant to come into health care facilities and get screening tests,” said Dr. Joseph McGowan, medical director of Northwell Health’s Center for AIDS Research and Treatment. “And so now, in 2021, even though we were still dealing with the pandemic, testing vans were going out, community based agencies were starting to open up, and so we're getting back to more regular testing rates.”

Dr. McGowan, who specializes in infectious disease and internal medicine at Northwell, which is the state’s largest healthcare provider, points to data that shows the overall number of cases is decreasing. Before the pandemic, the state recorded six consecutive years of declining new infections. He described 2021 as a “statistical issue about the fact that during the lockdown … fewer tests being done.”

Still, Long Island is on a steeper slope than the rest of New York.

Over 100,000 New Yorkers are living with HIV or AIDS, if the virus is left untreated. Among them are about 5,300 patients living on Long Island. About 75% of all new infections last year were in New York City, according to the report.

While most patients living with HIV are at least 40 years old, nearly 70% of new cases are in people under the age of 40. The majority of new diagnoses are in people of color. Black and Latino patients are diagnosed at seven and four times the rate of their white neighbors, respectively.

“It tells us that our messaging is not getting to the appropriate populations,” Dr. Sharon Nachman, chief of the Division of Pediatric Infectious Diseases at Stony Brook Children's Hospital.

“We did a really good job messaging HIV risk in the past,” she continued. “And that population heard it, understood it, and we're seeing very few new cases in that demographic. But our messaging to younger adults — male, perhaps from different demographics — they're not hearing that messaging at all.”

In addition, Black and Hispanic populations make up 34% of the state population, yet only account for 74% of new HIV diagnoses, while non-Hispanic White people make up 55% of the state population and 20% of new diagnoses, according to the governor’s office. Racial disparities have accounted for over 50,000 new HIV diagnoses in the state.

“The disparity in the statistics is proportional to the disparity in the information that people receive. There is not enough information or prevention being done in communities of color, not only for those who are at a higher risk of contracting the disease, but for everyone who is currently sexually active,”said Father Gerardo Romo, the Bishop's Vicar for Hispanic Ministry at the East End in the Episcopal Diocese of Long Island.

"It is incredible that among many young adults, they don't protect themselves," he said.

Romo said he has ministered to the people who have been diagnosed with HIV or AIDS. They reported they did not have enough knowledge or information about the virus before becoming infected, and were not aware of prevention campaigns locally that were done in Spanish.

“They believed that this was an issue exclusive to the gay population. Also, not having access to information or providers in Spanish who could educate them, puts the community even more at risk,” Romo said. “They didn't understand all of the ramifications either, they were confusing HIV with AIDS, and I explained to them that although they are related, they are two different things. In fact, one of them was already in the AIDS phase, but thanks to the medicine he takes, he is stable."

Romo explained that now, thanks to the doctors who treat them, the people he has guided have already been able to receive education in Spanish about the virus, but the key is prevention, he said.

“We need prevention and awareness at all levels, for all people, equally,” Romo said.

Dr. Nachman, who also serves as head of the Maternal Child HIV/AIDS Program at Stony Brook Medicine, said her hospital is no longer seeing any new infected babies. “Our messaging to pregnant women has been wildly successful,” she said. “And we're using all the tools that we need to use and those women are not getting infected. And for those who are infected, they're not transmitting infection to the babies.”

These programs were developed amid a wave of AIDS-related deaths in the early 2000s, especially to prevent infection in-utero or at birth.

In addition, a system of state Designated AIDS Centers was set up to prevent and treat those living with HIV.

In Nassau County, North Shore University Hospital, part of Northwell Health, and Nassau University Medical Center, which is a public-benefit corporation, are included in the state network. The medical center is a public teaching hospital funded, in part, by Nassau County, and affiliated with Stony Brook University’s Health Sciences Center and Northwell Health.

Stony Brook University Hospital is Suffolk County’s state designated AIDS provider serving those living with HIV.

“As the epidemic starts to shrink, with fewer and fewer people in the general population getting infected, it concentrates within certain communities,” Dr. McGowan noted, saying the goal now is to move into communities where direct intervention can be made to prevent, and treat those living with HIV.

While Long Island has more people living with HIV and more infections than any other region in the state other than New York City, the region does also fair well in viral suppression rates through engaging people in pre- and post-exposure prophylaxis, as well as screening and testing through “agencies that are on the ground in community” health care settings, Dr. McGowan said.

“Going to places where people can congregate: gymnasiums, beauty parlors, hair salons, places of worship. And that's where I think we'll be able to reach people,” he said. “You have to communicate from within the community. So you have to find it, you have to be sure that people recognize their own risk.”

Last year, Governor Kathy Hochul pledged to end the HIV/AIDS epidemic by 2024 in New York. This means the rate of new infections would decrease faster than the rate of deaths among people living with HIV.

In 2021, more than 2,300 New Yorkers died from the disease or complications other than having tested positive for the virus.

“I think the messaging about ‘HIV is not a death sentence’ has absolutely gotten through because they are having unprotected sex all the time,” Dr. Nachman said. “I think we should prevent it, instead of treating you while you're infected, because these are all new infections. That means we failed at prevention.”

A native Long Islander, J.D. is WSHU's managing editor. He also hosts the climate podcast Higher Ground. J.D. reports for public radio stations across the Northeast, is a journalism educator and proud SPJ member.
A Spanish language media outlet serving Suffolk County, New York.