It’s sad that HIV can spread simply because people are confused about prevention.
That’s the reality for undocumented immigrants and by extension, their sex partners. To be clear, we’re talking primarily about gay and bisexual men. Too often they’re given incorrect advice, being told that they do not qualify for free PrEP medication for the prevention of HIV because of their immigration status. That’s just not true, whether they’re visiting to attend the White Party or staying to work.
“Anyone in the United States over the age of 14 weighing at least 77 pounds can get free PrEP, whether they’re undocumented or not,” says Joshua Gutierrez, the prevention and health education manager at TPAN, the community-based HIV/AIDS nonprofit that publishes Positively Aware (see “Let’s Talk,” January+February 2022). “I can’t tell you how many times visitors to the United States would call Howard Brown [Health Center, the Chicago LGBTQ clinic where Gutierrez worked as a PrEP navigator] and say, I’m here from the Netherlands for three weeks and I want PrEP. Well, no problem. Or, I’m here from Germany on a student visa for six months and I want PrEP, but I don’t have insurance. Again, no problem.”
Daniel Mendez also worked at Howard Brown for years as a PrEP program manager, and was successful at getting many undocumented clients onto HIV prevention medication. “In terms of people who are undocumented, I never ran into any issues helping folks access medication,” Mendez says. Today he works as a program manager at EDDR Foundation, which focuses on workforce job development to enhance the lives of Black and Brown people, assistance that includes housing, transportation and recovery coaching.
Undocumented immigrants are often advised by lawyers, family members and friends not to access “government services.” Err on the side of caution, they say, to avoid being identified by the federal government. But not taking advantage of PrEP can be a big mistake.
“I had a handful of folks who wanted PrEP, but because they were terrified of all those legalities, when they finally went to get it, they ended up [testing] HIV-positive,” says Mendez. “And they themselves said, I just wish I would have spoken to somebody.”
But who they talk to makes all the difference. A PrEP navigator would explain their eligibility for PrEP and help them get it.
Seeking help
Mendez did have one instance with Gilead Sciences, getting the company to donate one of its PrEP medications, in which the company asked why the client didn’t simply use his health insurance. When Mendez checked, his client said, Hey, listen, this is not my Social Security number. He had been using a friend’s number to apply for work.
“It was a simple thing that Gilead was able to address,” says Mendez. “This is maybe about four years ago, and this person is still on PrEP.”
He says it shows the benefit of having an advocate in your corner.
Accessing free PrEP and prevention services does not jeopardize a person’s immigration status. That’s because the U.S. Citizenship and Immigration Service (USCIS) cannot access medical records, period—punto. The Health Insurance Portability and Accountability Act (HIPAA) prevents it. HIPAA protects everyone’s medical privacy. PrEP navigators are in a perfect position to explain that.
It’s the work of PrEP navigators to stay up to date on everything that’s available for clients in their area. Contrary to legalistic fears, that does include services using government funds.
Many roads
“There are different ways to get PrEP,” explains José Javier, a former PrEP navigator who is now a community coordinator and trainer with Holy Cross Health in Fort Lauderdale.
A federally qualified health center (FQHC) can provide PrEP services. Organizations and clinics can use 340B program revenue—government funds intended to help covered entities stretch their health dollars. They can use general revenue or donation dollars. People can get assistance for prevention meds through the “Ready, Set, PrEP” program from the U.S. Department of Health and Human Services (DHHS). They can help individuals register for free PrEP medications through pharmaceutical companies (in addition to Gilead’s oral medications, ViiV Healthcare has an injectable PrEP drug, Apretude, administered once every two months).
Having so many options can lead to confusion. “That’s why we advocate for using PrEP navigators, because they will take them there the easiest way possible,” said Javier. No matter how capable a case manager or other social worker may be, he says, a PrEP navigator is best equipped.
Immigration
Lawyers, however, are not PrEP navigators. They cannot be expected to have that level of knowledge or expertise. They aren’t expected to work with pharmaceutical companies, local health departments, HIV service organizations, federally qualified health clinics, or the federal government’s Ending the HIV Epidemic (EHE) initiative. Lawyers who work in health, especially HIV rights, however, do often talk with these organizations on a regular basis.
Immigrants of any status are advised against using public benefits because they are supposed to demonstrate self-sufficiency or sponsorship—to not be a burden on the government. But public health and public benefits are two different things. Again, PrEP navigators are in a perfect position to explain that.
The public health arena focuses on public health. In HIV, that means preventing transmission (in addition to protecting the health of people already living with the virus—which also prevents transmission in its own way). HIPAA privacy promotes the use of health care services.
“Immigrants who receive cash or long-term institutional housing may be considered a public charge, which can derail efforts to get a green card. Receiving other benefits like Medicaid or SNAP [Supplemental Nutrition Assistance Program] does not make an immigrant a public charge,” explains Ronda Goldfein, executive director of the AIDS Law Project of Pennsylvania.
LGBTQ immigrants
Numbers for the undocumented U.S. population are not easy to determine. Among adult LGBTQ-identified immigrants, there were approximately 267,000 who were undocumented, researcher Gary J. Gates reported in a 2013 study published by the Williams Institute of the UCLA Law School. Of these individuals, 71% were Latinx and 15% were Asian or Pacific Islanders.
‘I always like to point out and stress that they need to put their health first.’
A new recommendation on “the critical role of peer navigators” to guide people through health services was added by the World Health Organization in July to its updated Consolidated guidelines on HIV, viral hepatitis and STI prevention, diagnosis, treatment and care for key populations.
Moreover, the Centers for Disease Control and Prevention (CDC) is practically going hoarse reporting that not enough people considered most eligible for PrEP in this country are taking advantage of it.
Dealing with fear
PrEP navigators working with immigrants are not downplaying their fears. They’ve heard horror stories of the bad things that have happened to friends of their clients. The barrier to prevention is real.
For immigrants who are undocumented, there’s fear of imprisonment and of deportation, legal matters that can cause great harm. This includes being returned to regions where they face violence. In the HIV community, transgender women imprisoned while awaiting deportation have been killed.
“They might rather be safe in terms of their immigration status than be safe sexually because of fear about the government coming after them,” says Mendez. “We still need to alleviate that fear. People would be like, Hey, I don’t want to say this, but now that I lied, is it going to come back to me? Are they going to have documentation that I lied by using somebody else’s information? And that’s not at all how that works.
“A lawyer is going to say, Err on the side of caution. Don’t access these services. Don’t activate benefits. So it makes sense for somebody to do that,” Mendez continues. “But what happens over time is that there are always either new laws and new amendments, or even just updates on existing policies.” He found that when people received incorrect or confusing information, they stopped trying to access PrEP. “The assumption is, I can’t get it.”
Says Javier, “At some point it was prohibited for people to migrate into the U.S. if you were living with HIV. Then President Obama changed that. Now [some] people make it more difficult to prevent new transmissions of the disease that you didn’t want to come in in the first place.”
College students
Andrea Rivera, a PrEP navigator at The Damien Center in Indianapolis, says that she always explains to people that, “We don’t need to know your status per se. But if someone is seeking asylum, we could even help with things like finding which community partners can provide free or discounted legal help, having interpreters, and finding immigration lawyers. If clients come in needing more than just PrEP, we must utilize our other community partners to meet those needs. Most clients prioritize their legal needs over their health, and we must be able to provide some help for them to want to take care of their health.”
‘What I like to say to people that I’m meeting for the first time is, know that everything is confidential.’
—Andrea Rivera
She has helped dozens of undocumented individuals obtain PrEP. Many are from local colleges, most of them gay or bisexual men. Some were raised in the U.S., having been brought over as children without documents. “You wouldn’t be able to distinguish that they’re not necessarily from here because they grew up speaking English,” she says. “So they’ll tell me, Technically, I was born in Venezuela. Now because of this, I can’t receive all the benefits anyone else can.”
She tries to reassure them about their PrEP options. “What I like to say to people that I’m meeting for the first time is, Know that everything is confidential. Nothing ever gets leaked or sent out to anybody. So the government doesn’t know that you’re coming to us trying to get free services. You are protected by HIPAA privacy laws. Despite your immigration status, you are still somebody who gets treated with dignity. You are someone who is able to receive services just like anybody else. No one is judging you for taking that initiative in protecting yourself. In fact, I admire it.
“And I always like to point out and stress that they need to put their health first. If you’re here six months, a year, two years, 20 years, it doesn’t matter. If you want to protect yourself and you’re taking that initiative, that is a big step. You have that right to protect yourself.”
She still struggles to explain to people that they are safe. “I’m not sure exactly how to explain it to them in terms of how they’re not jeopardizing their immigration status by getting services. Even explaining that HIPAA protects against government officials knowing what is happening with their health, I feel the hesitation is still there with certain people. They’ll say, Okay, but I’d rather not. And those are some of the most vulnerable, most of the time. I can only tell them that I cannot force them to do anything, but I know this would be a great benefit. But I know that people don’t want to play with the process of trying to obtain citizenship or even residency. I’ve heard horror stories from people of many nationalities. Then they say that one little mishap can jeopardize everything.”
Javier points out that, “When you go to a clinic, they’re always going to collect data from you. You can always leave the line for a Social Security number empty. If they need to collect data from you, they can always connect with you. If they ask on the spot, you can say you don’t remember it. Some people don’t remember their Social Security number. I don’t think in public health you can be denied service based on immigration status.”
Advocates over the years have cited unnecessary documentation as a barrier to prevention for all people, but perhaps especially immigrants. Some organizations no longer ask for a Social Security number or they make it clear that it’s optional.
For anyone with limited resources, clearly the best way to get to HIV prevention with PrEP is through a navigator. They can even advocate for people with private insurance who face stigma in their clinic or expensive co-payments for access. They know best what’s available—for everyone.