Orlando continues to have a markedly high number of HIV diagnoses, much like Florida as a whole, and the area is struggling to get care for those who need it, according to newly released analyses of 2021 data.
That year, 618 people in metro Orlando were diagnosed with the human immunodeficiency virus, which can cause AIDS, bringing the total number of HIV-diagnosed people in the metro area to 14,298.
Florida— with 5,000 new cases each year over the last decade — has among the nation’s highest rates of new diagnoses and hasn’t seen much of a decline even as the U.S. saw an 8% decrease over the last 10 years. Orlando’s rate of HIV-positive residents is higher than Florida’s average and almost double the national average, according to data released Nov. 14 on Aidsvu.org, which visualizes HIV’s impact using data from state and city health departments compiled by researchers at the Emory University Rollins School of Public Health.
Experts agree that progress has been made in the last few years in Orlando and in Florida as a whole, but there is still an unmet need for care in the region, exacerbated by socioeconomic disparities.
The vast majority of people newly diagnosed with HIV in metro Orlando in 2021 were Black or Hispanic, mostly residing in Orange County. Most were ages 25 to 44 and caught it through unprotected sex. A smaller group caught it through injection drug use.
Downtown Orlando and nearby Orlo Vista stood out in 2021 for their high infection rates. The 32805 zip code had one of the highest rates of people living with HIV, more than six times higher than Florida’s rate. This zip code is primarily Black and mostly made up of people in their 20s to 40s.
“When we look at health disparities and health impact across the board – whether it’s diabetes, whether it’s cancer, whether it’s high blood pressure … when there is a rainstorm for white folks, there’s a thunderstorm as it relates to black folks and Hispanic folks,” said Imara Canady, the AIDS Healthcare Foundation’s National Director for Communications & Community Engagement.
Free HIV testing is available throughout all of Central Florida through the Florida Department of Health and other organizations, including AHF’s Out of the Closet thrift stores. Federal and state programs offer discounted or free treatments and pre-exposure prophylaxis – PrEP – a daily pill or bi-monthly shot that can drastically lower a person’s chance of getting HIV.
Over the last five years, the number of PrEP users in Orange County tripled from 1,852 in 2018 to 5,553 in 2022, according to Aidsvu.
But the data shows that these resources aren’t reaching some of the people who need them the most. While almost 80% of those diagnosed in Orlando were linked to and received HIV care after their diagnosis, only about 67% were “virally suppressed,” which is when medications lower HIV’s viral load so much that it can’t be detected or transmitted.
Though this statistic is in line with the rest of the country, it’s far from the ideal. The Centers for Disease Control and Prevention has set a nationwide target of 95% viral suppression by 2025.
“People are linking to care but not staying in care,” said Elena Cyrus, an infectious disease epidemiologist at the University of Central Florida who has studied HIV across the state and country.
One large factor impacting people’s ability to get regular HIV care in Orlando is economic disparity, said Shaundia White, the Orlando regional director of the AIDS Healthcare Foundation.
“Income disparity, housing costs, job insecurity, it’s impacting individuals’ lives. Those things are really outside of the sphere of HIV care, but they’re all playing some indirect role,” said White. “When those social factors are going on in someone’s life, their health tends to take a backseat.”
Certain groups also face heightened risk due to stigma or a lack of information.
In Florida, about 13.5% of people living with HIV don’t know it, according to state estimates.
Women, in particular, are often left out of the conversation when it comes to HIV.
Nationwide, a growing number of women – largely Black women – are receiving diagnoses after catching the virus through heterosexual intercourse or injection drug use, Cyrus said.
In Orange County, about 1 out of 4 people living with HIV are women, most of whom contracted the virus from heterosexual sex.
In line with national trends, women in the county were less likely than men to get HIV care within a month of diagnosis.
“We have a problem with women who are least likely to get PreP, link to care, or be virally suppressed,” Cyrus said. “Risk is increasing. More care needs to be paid attention to them.”
There’s also a need to reduce stigma, particularly in communities of color, so that people aren’t afraid to get tested, said Canady. He views a lack of targeted, relatable messaging as one of the factors that drives up the rates in communities of color.
Over the last several years, AHF and many other HIV prevention efforts have created groups that focus solely on targeted outreach toward Hispanic and Black communities.
In recent years, these efforts have expanded to include transgender people. AHF last year started a Central Florida chapter of Flux, a group focused on the transgender community.
“There’s a community out here that is here to love on you, support you in a non-stigmatizing space, and to ensure that everyone who is living with HIV is not only living with HIV, but is thriving while living with HIV,” Canady said.
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