In his February 2019 State of the Union address, President Trump announced a goal -- with details to be worked out by the U.S. Department of Health and Human Services -- to end this nation's HIV epidemic by 2030. Latinx leaders and HIV health advocates say that in order for the goal to be realized, Latinx communities in the U.S. need special attention.
In a peer-reviewed commentary published this month in the American Journal of Public Health, lead author Vincent Guilamo-Ramos, Ph.D., M.P.H., L.C.S.W., founding director of the Center for Latino Adolescent and Family Health at New York University, and colleagues mined HIV data from the U.S. Centers for Disease Control and Prevention (CDC) and other sources which show that, while new HIV infections are generally falling in the U.S., they are rising among Latinx people. The article states that, compared with the general population, this group is less likely to be aware of their HIV status or to use PrEP (pre-exposure prophylaxis), and accesses HIV care at a lower rate. Only about half of Latinx people living with HIV are virally suppressed, and they are also more likely than African Americans and whites to never have been offered an HIV test. The authors also write that national efforts, including CDC capacity-building assistance for vulnerable populations, have not been enough to address the crisis.
"People have not been willing to accept that rates have been going up for Latinos and that they have worse outcomes," Guilamo-Ramos told TheBody. "Latinos are more likely to be uninsured, underinsured, or they access health care episodically, through urgent care or the ER [emergency room]. Obamacare has been great, but it doesn't cover [those who are] undocumented."
And undocumented people, if they need care, tend to wait until a condition is serious enough that they need the ER, according to Guilamo-Ramos.
Guilamo-Ramos also pointed out that the administration's record on Latinx issues -- and rhetoric about Latinx people -- is a big problem and could be worsening the HIV crisis for U.S. Latinx populations. A Pew Research Center survey from 2018 concluded that half of Latinx people believe their situation in the U.S. has deteriorated under the Trump administration.
Beyond politics and policy, one reason for the increase in new transmissions is simply demographics. "As a population, we have been growing exponentially -- through births, not migration," said Guilamo-Ramos. "But we haven't been prioritized as a population of need."
Guilamo-Ramos will be among a delegation of HIV experts, Latinx advocates, and community stakeholders from around the nation convening in March 2020 for the National Hispanic/Latinx Health Leadership Summit. Themed "Setting Our National Latinx Health Agenda," the summit is meant to provide a national focus on HIV, viral hepatitis, sexually transmitted infections, substance use and other health conditions that disproportionately impact Latinx communities.
The movement started in March 2018, when a letter signed by more than 200 organizations and individuals was sent to Eugene McCray, M.D., director of the Division of HIV/AIDS Prevention at CDC. The letter said that "an internal consultation is necessary to coordinate a national response that will mitigate the impact that these new HIV infections will have on our most vulnerable Latino communities." The letter asked for the initiation of conversations to "facilitate a better public health response to this serious trend of new HIV infections affecting our communities."
Guilamo-Ramos, who is on the steering committee of the delegation, said its top priorities are reducing HIV stigma, enhancing treatment availability, developing tailored behavioral interventions, recognizing community diversity, and promoting integration of HIV care with primary care in the medical community. "We want key policy directors nationally to think about these issues and about how to support Latinos," he said.
Service Gaps in South Florida
CDC data show that, perhaps not coincidentally, regions in the U.S. with the highest rates of new HIV cases also have a very high percentage of Latinx individuals -- something overworked HIV/AIDS service organizations in these areas know all too well.
One of these regions, South Florida, suffers from a variety of overlapping factors driving the epidemic, according to Rafaelé Narváez. "We are a region of immigrants, and many of our recent arrivals bring with them myths about HIV, or internalized homophobia that prevents them from being ready to undertake risk reduction options," said Narváez, director of health programs at Latinos Salud, an education and service provider with three locations in Miami-Dade and Broward Counties. "Our high background prevalence makes any unprotected sex riskier than it would be elsewhere."
Narváez noted gaps in services that keep HIV rates high. "Historically, South Florida has not focused its resources on HIV prevention and services specifically by and for gay Latinos," he explained. "Latinos Salud is the only gay Latino HIV agency in the state with walk-in services."
Narváez also identified structural barriers that make it difficult for Latinx community members to access PrEP. "Our region's first county-wide PrEP messaging wasn't even available in Spanish," he said. "The same barriers that prevent many Latinos from accessing health care also inhibit accessing PrEP." He added that things are improving slowly, with several agencies, including Latinos Salud, making a significant push to raise awareness about PrEP, and to navigate clients into initiating PrEP.
Fear and Machismo Culture on the Border
Oscar Lopez, chief policy and advocacy officer at Valley AIDS Council, the only HIV/AIDS service organization serving 1.2 million people in South Texas, explains that there are unique challenges of serving a border population with two of the poorest cities in the U.S. and a high number of undocumented and Mexican-national clients.
"The culture of machismo is strong, which means MSMs [men who have sex with men] may not identify as gay or bi. They may have wives and kids," Lopez explained, and keep secret the fact that they are having sex with other men. That attitude, he said, can have dangerous consequences. "We have had cases where machismo stood in the way of a person admitting that [he] has HIV. So he will put his girlfriend or wife at risk, and he might even keep his wife from seeking care [for HIV]." Lopez related an incident in which child protective services had to be called so that an infant would be given HIV meds, because the father wouldn't allow it. "It was a reminder of his own status," he said. "And we serve Mexican nationals who cross the border, and they have it harder. There are few [HIV] specialists in their country, and the stigma is even worse."
Immigration status is a big issue, Lopez added, and fears over being arrested and detained for seeking any public service are rising. "The undocumented are afraid to come to us -- even those who are citizens who may have an undocumented family member. Every week here there's an ICE [U.S. Immigration and Customs Enforcement] raid. They're even going to football games here and setting up checkpoints near supermarkets."
According to Lopez, it is not only area residents' beliefs and fears that lead to worse health outcomes. The attitudes of the medical establishment also cause many people living with HIV to drop off the continuum of care.
"Every day we get a referral [of an HIV-positive patient] from a doctor or a hospital with a note saying, basically, they don't want to deal with this person," said Lopez. "We can give doctors continuing medical education credits to learn about HIV/AIDS and treatment, but they won't do it. These are well-educated people who should know better. Now it's up to us to pick up people in remote villages and drive them to their appointments."
When he moved to the region from New York seven years ago, Lopez was shocked that there were no Pride festivals, and just a few bars that were the heart of LGBT life. So Valley AIDS Council helped to initiate Pride festivals, which have swelled annually from the first gathering of 100 people to nearly 15,000 this year, Lopez shared.
"To address HIV/AIDS we need to address homophobia and transphobia. We need to make it OK to be gay," Lopez concluded. "In the trans community, we helped them find their voice. To move the needle for the rest of the community." And he's seen progress. Despite the attitudes of fear and machismo, the clinics are "flooded with people" coming to be tested, he said. And partly thanks to local media, which run regular stories about PrEP and PEP (post-exposure prophylaxis), the state recently doubled Valley AIDS Council's funding, which allowed Lopez to double his staff.
Service providers throughout the U.S., whether in South Texas or South Florida, New York or Los Angeles, say they cannot address the factors leading to worse health outcomes for Latinx communities without a strong national effort that does not simply throw money at the problem -- though more funding is always needed -- but also sets clear policy goals for tackling the disparities.
*TheBody will be reporting on the National Hispanic/Latinx Health Leadership Summit in March 2020. Learn more or register for the summit on the event website. *