The 2024 National Latinx Conference on HIV, HCV and SUD (which addresses hepatitis C and substance use disorder, in addition to HIV), held last May in El Paso, brought together clinicians and advocates from across the country to share best practices for a population that’s key to ending the HIV epidemic: Latinx people, within and outside of the U.S. Issues of the border, including immigration and health care coordination, were prominent at the conference, which was organized by the south central AIDS Education and Training Center (AETC).
Educating clinicians along the border
The border region, known as a Health Professional Shortage Area (HPSA), has overstretched resources for clients, many of whom have great need, whether they acknowledge it or not. Across nearly 2,000 miles from the Pacific Ocean to the Gulf of Mexico, the border region includes four U.S. states—California, Arizona, New Mexico and Texas—44 U.S. counties, six Mexican states and 80 municipalities in Mexico. Defined as the area within 62.5 miles (100 km) of either side of the boundary, it is home to approximately 13 million individuals and to 26 U.S. federally recognized Native American tribes.
If the U.S.-Mexico border region were a U.S. state, said a 2016 analysis, it would rank first in the number of uninsured school children, second in death rates from hepatitis, third in deaths related to diabetes, last in access to health care and lowest in per capita income. With that baseline, getting people into HIV care is especially challenging.
One of many unintended consequences of red state governors sending migrants to blue cities is the impact on healthcare providers.
One presentation at the conference began with a very plausible scenario about a female migrant:
[She] is 28 years old and living with HIV but does not know it. She crossed the border last year from Honduras and made her way to a family in a U.S. city. Through a health fair she was given a wellness checkup that included a pregnancy test and an HIV test. The HIV test came back positive. What can you or your agency do for her?
It was a rhetorical question, but raises significant questions for clinicians. The U.S.-Mexico Border AETC Steering Team (UMBAST) is a collaboration of AETCs intended to enhance HIV care across the border, encompassing Texas, Arizona, New Mexico and California and supported by the HIV/AIDS Bureau of the U.S. Health Resources and Services Administration (HRSA) and the Minority AIDS Initiative.
The presenter offering the scenario, Peter Coronado, the UMBAST border training coordinator for Texas, spoke with POSITIVELY AWARE after the conference to share his thoughts about the challenges of serving border communities. He started by explaining that a primary mission of UMBAST is to create tools for healthcare providers who want to educate their patients on the available services in their home countries.
“For example, [if] I’m somebody who’s from Mexico, and I’m going back to Mexico to live there and I’m a person with HIV, but I’ve been getting my services in the U.S., what medications are available in Mexico in terms of antiretroviral therapy? What organizations, what kind of health insurance do I need?” UMBAST also advises clinicians on the rights of people living in the U.S. who may not be documented. “Are they eligible for ADAP or patient assistance programs? We want them to be aware of what a person without documentation can access in the U.S. for HIV care and treatment and prevention,” Coronado said.
People who don’t know their HIV status present an even bigger challenge for clinicians, because testing might come, as in the hypothetical case presented, by chance, and they may not want or be ready to seek care. “I don’t like to call [them] hard to reach populations, because we can reach them,” Coronado said.
“But we know that Latino communities often access health care when they need it, when their leg is broken, and their primary care providers tend to be emergency rooms,” he said. “So we have to kind of be a little bit more creative in reaching them.”
Coronado noted one group of professionals best equipped to do outreach: community health workers. “Community health workers are gatekeepers that already have the trust of their communities. We’re not only training people who are already living in that community, we’re giving them the tools on how to be able to get them involved in HIV, either testing or treatment.”
Cultivating and relying on community health workers is especially helpful in making undocumented people feel safe. “We ask, How does your organization build trust within the Latino community, especially for people who are undocumented? How do you present yourselves to them? Who is presenting themselves to them? Do they look like them? Do they speak like them?”
Coronado emphasized that UMBAST has training modules for all these needs, including specific modules on how to prescribe antiretroviral therapy, PrEP or hepatitis C treatments.
There’s another hurdle that keeps many migrants and undocumented people from seeking care, especially preventative care. Recalling a walk with a colleague near the conference hotel in El Paso, Coronado and a colleague encountered two young men, asylum seekers from Venezuela, and began chatting them up about their health concerns.
“But we didn’t say anything about HIV,” he said. “They both mentioned oral care and that they were taking a lot of Tylenol for tooth pain. We told them they could access services with community health centers, and their response was, ‘No, no, no, we didn’t come to this country to take away from it. We came to this country to give to it.’ We reminded them that if they don’t access the services the money would be taken away, because it’s not being spent. They didn’t understand the health care system. I could only imagine that when it comes to preventive services like PrEP, they might feel like if they access it, that might take it away from the country.”
Both sides now: Cross-border collaboration to serve PLWH
Immigration was the focus of another presentation, this one about a more hands-on approach to getting people in the border region linked to care. Mayra Mollo, STD/HIV Disease Intervention Specialist (DIS) coordinator from the Arizona Department of Health Services (ADHS) and colleagues shared how their team intervenes to help binational clients access resources on both sides of the border.
After the conference Mollo spoke with POSITIVELY AWARE and shared some of the complexities and intersecting factors that make binational people increasingly vulnerable to HIV, including immigration status, stigma, lack of access to culturally competent care and history of the U.S. government denying entry to people with HIV. These issues and more make binational clients vulnerable to falling out of care or could make them forgo care altogether.
According to the ADHS’ HIV Surveillance 2023 Report, nearly half of reported new incidences of HIV/AIDS in the state last year (405 out of 975) were Hispanic, and it’s not known how many were binational compared to permanent Arizona residents. The ADHS Disease Intervention Specialist team Mollo leads was formed in 2020 to coordinate cases where binational clients have tested positive for HIV or syphilis. “[HIV positive tests] might be from prenatal services, or because they went to an outreach event or an emergency department, or maybe even they went to donate plasma,” she said. “Every client is different.”
Following up starts with making sure an individual knows their test results. “Then we try to figure out who else may have been involved,” she said. “Who are their partners, who else is at risk, to connect the dots and minimize the spread of the infection.” Case managers answer questions and offer referrals and resources. The resource connection can be tricky because it depends on which side of the border a client resides at a given time. In the U.S., HIV coverage is provided by private health insurance, Medicare/Medicaid and Ryan White services. In Mexico, it’s a mix of private insurance, the military and three social services organizations.
To meet the demand, Arguello and colleagues determined that collaboration between agencies was crucial.
Not surprisingly, clients need linkage to care for more than HIV. Mollo recalled a case where a mother with HIV gave birth in a rural community in Arizona, was diagnosed with HIV after delivery, before moving back to Mexico. Knowing the mother needed ongoing care for herself and her baby, the DIS team found resources on the Mexico side of the border. Her husband, who lived in Mexico, couldn’t cross the border. “We knew he needed [HIV] care, so we figured out ways to be able to get him tested and into PrEP care,” she said. From that experience DIS created a directory of resources for maternal and congenital HIV/STI cases.
Client follow-ups are done through email, WhatsApp phones and international phones given to clients. The point, Mollo said, is to make it easy for the client. Over time, and through collaboration and communication between health care providers on both sides of the border, the process is becoming easier for the DIS team as well.
Mollo emphasized that migration in border regions can be an ongoing process rather than a one-time event. Short of a binational HIV prevention approach, which would require resources and policies agreed on by both countries, it’s up to health care workers and advocates on both sides of the border, like the ADHS team, to improve outreach.
How the migrant crisis affects HIV care in Chicago
One of many unintended consequences of red state governors sending migrants to blue cities is the impact on healthcare providers. In Chicago, which has seen tens of thousands of displaced people arriving from Central and South America in recent years, clinicians have been scrambling to provide services and struggling to understand their unique needs.
It’s a given that migrants will need health care, and some will have HIV, even if they don’t know it. Few are likely to have health insurance or even the necessary documents to get covered, all factors creating a growing conundrum for providers. Building resources to care for migrants was the topic of a presentation by Luricella Arguello, lead medical benefits specialist for AIDS Foundation of Chicago (AFC). Arguello spoke to POSITIVELY AWARE after the conference and explained that migrants showing up in a city where they know nobody presented extra challenges for care workers.
“What might be a normal conversation to someone who has lived in the U.S. for a while, around insurance, deductibles, copays, are something that [new migrants] have had zero familiarity with,” Arguello said. Getting people into the office to qualify for coverage can be an issue as well. “Even though with Ryan White there are services to help like transporting people through Uber, they can only utilize those services once they’re enrolled in the program.”
AFC is not a clinic; it’s an intermediary for many HIV services between the state and agencies that provide clinical services, which means the burden falls on Arguello and other AFC colleagues to help healthcare partners manage the maze of rules for benefits for migrants. She gave an example of a migrant without a state ID, which typically requires a call or a trip to a consulate office. However, the Venezuelan consulate in Chicago has been closed for years. Barring a consulate visit, a case manager must find state programs that let clients self-attest to their identity and present whatever documents they have for their asylum case. “We were just trying to find any way to be creative to get people through these processes,” Arguello said.
And it isn’t just a few new clients, she explained. The number of applications for medical benefits for victims of trafficking and torture and other crimes has exploded the past two years in Illinois. “Not even the HIV-positive folks, but individuals in general, [Illinois] went from getting maybe a couple hundred applications for that program to getting 1,000 minimum per day.” She noted that some migrants who show up at a clinic with a health issue may or may not let the provider know they have HIV and need medication. That’s when AFC gets a call.
To meet the demand, Arguello and colleagues determined that collaboration between agencies was crucial. They started a task force to decide what internal and external resources were available and make sure everyone caring for migrants, especially at local Ryan White clinics, was aware of this. They came up with a list of best practices for making a cumbersome process as streamlined as possible.
Arguello said resource sharing among healthcare administrators is essential. “Try to come together to share both your struggle as well as the resources that you have found, because there’s going to be a variety of your partners in the community that are having the same struggles and the same questions. Some of them already figured out a way around some of the issues you’re facing.”
Mollo emphasized that some softer skills come in handy, too, including the ability to approach clients with cultural humility. Because the danger of not helping these individuals, Arguello emphasized, is that they will fall out of care. “If they have no housing, no food, health care isn’t necessarily going to be at the forefront of their thinking, at least until they’re faced with a serious problem.”
LARRY BUHL is a multimedia journalist based in Los Angeles. He has covered HIV/AIDS and other infectious diseases for more than two decades. In addition to POSITIVELY AWARE, he is a regular contributor to TheBody.com, Everyday Health and capitalandmain.com. His work has appeared in USA Today, Salon, Undark, KQED, The New York Times and others.