Alejandra Grillo-Roa is no stranger to paperwork. It makes up the majority of her job at Entre Hermanos, but her job isn’t exactly dreary. She is the organization’s Bilingual Medical Case Manager, so filling out forms, making appointments, and checking in with her clients — HIV+ members of the Latinx LGBTQ community — is often a matter of life and death.
“For my clients, the biggest challenge is being undocumented,” she says. There are more resources for HIV+ undocumented people than ever, but getting access to them isn’t always easy. “Being undocumented you have to adjust yourself to the schedules you’re given,” she notes,” So I’ll send them the [insurance] application with a prepaid envelope, and they’ll sign it and return it to me so I can do the rest of the process here.”
Luckily for her clients, Kaiser Permanente does not ask for a social security number on their application, and the Washington State Department of Health (DOH) is also unconcerned with immigration status. Most of her clients are able to access care via the state’s Early Intervention Program (EIP), which aims to connect people to HIV care as soon as they’re diagnosed, and also have their private insurance paid for. However, having Grillo-Roa to mediate and translate is crucial for many Entre Hermanos clients. While it is modern HIV medications that save patients’ lives, access to those medications is what’s really at stake.
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“The old system is that if they have no access to medication, that’s it,” Grillo-Roa reminds us. “Their viral load will go up. CD4, which is like the body’s immune system, will go down, and they can develop AIDS. And then they’ll get an opportunistic infection and they’ll die.”
Now, thankfully, one of the biggest threats to her clients is failing to maintain their regimen. She spends a large part of her time staying in touch with clients to make sure they have medicine and they’re taking it regularly. When she first takes on clients, she comes up with a detailed service plan agreement to make this happen.
“Okay, we have to be in touch at least once a month.”
“We’ll go through their whole life — mental health, substance use disorder, socialization, housing, transportation. The last part of that is like, ‘Okay, we have to be in touch at least once a month.’” She has to emphasize a communication schedule, she says, because many of her clients feel like they’re bothering her when they call her with issues. That, she says, could not be further from the case. “What I’ve noticed, and is very common in the Latino community, is that they think I’m, like, doing a favor for them. I’m like, ‘No, this is my job and I’m getting paid.’ They’re like, ‘No, I can’t, I called you already.’”
She’s thrilled to report that many of her clients maintain undetectable status, meaning their viral load is so low it doesn’t show up on tests, and they can’t transmit the disease to others (they still have it, of course, which she says she is careful to remind her clients of). Entre Hermanos also helps clients who are HIV negative access PrEP, helping prevent further infection.
That said, the actual biggest threat to her clients’ wellbeing is the same as for Entre Hermanos’ clients living without HIV: deportation. But while deportation typically represents a death penalty for any member of the LGBTQ community, due to homophobic or transphobic violence, it is pretty much certain death for people living with HIV, she says. While modern medicine has made it possible to live a long, comfortable life with HIV, and Washington State specifically has made it a priority to provide access to medicine for all HIV+ individuals, many of her clients’ home countries simply do not have the correct medicine available.
“Mexico right now is having a very hard time providing medication for people living with HIV,” she notes. “They have no medications, and the medications they do have are very, very old medications, with way more side effects. Like kidney, liver, bones — it’s just terrible.”
“The numbers are crazy. It’s insane.”
If there is medication available in a client’s home country, she adds, it’s often prohibitively expensive. A client of hers recently was subjected to “removal proceedings” (bureaucratic speak for deportation), Grillo-Roa says, explaining that the client’s lawyer asked her for a letter estimating the costs of HIV care if the client were to be deported. After researching the cost of the client’s medication — Tivicay and Descovy — she discovered it would be around $16,000 for a one month supply of just the Tivicay.
“The numbers are crazy,” she says. “It’s insane.”
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¿Ya te hiciste la Prueba del VIH? ¿Estas usando PrEP? ¿Tienes condones? ¿Eres INDETECTABLE? Entre Hermanos ofrece pruebas de VIH Gratis! Es rápida Es Confidencial Es Gratis! De Lunes a Viernes, desde las 10 am hasta las 5:30 pm. El virus del VIH no conoce raza, sexo, orientación sexual o edad, es importante hacerte la prueba para estar seguro.
Fortunately, HIV status is considered as part of asylum applications, another reason that the paperwork she does is so important. Her letters can actually save lives. Beyond that, she helps her clients life full lives here in Seattle. She helps clients get care for HIV, which is the number one priority, but also has training to assist clients with mental health and substance abuse issues. Many of her clients have had deeply traumatic immigration journeys, and have mental health issues stemming from it.
“We keep fighting for them. Advocating and fighting for them for whatever is needed.”
“What I’ve found most challenging is when they tell me their stories of how they got here and what happened to them,” she says. “It’s like, I’m going to cry, but I can’t cry in front of this person. I just say, ‘I’m sorry that happened to you.’ That’s all I can say is, ‘I’m sorry.’”
But, she says, there is hope. One of her clients is a lesbian woman who contracted HIV when she was raped and left for dead by the people she paid to help her attempt a border crossing.
“All the trauma and all of the things, it was just terrible,” Grillo-Roa says, adding that, “She’s come so far now. She goes to survivor’s groups, we talk every two weeks and she’s doing so good. She still has the fear of letting her mom know [about her HIV status], but I think she’s going to get there at some point.”
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¿Ya te hiciste la Prueba del VIH? Entre Hermanos ofrece pruebas de VIH Gratis! Es rápida Es Confidencial Es Gratis! De Lunes a Viernes, desde las 10 am hasta las 5:30 pm. El virus del VIH no conoce raza, sexo, orientación sexual o edad, es importante hacerte la prueba para estar seguro. Estamos en la S Jackson Street y la 17th avenida de Seattle.
She currently serves 73 clients, with the assistance of a community health educator, but hopes to help even more. Many of her clients are referred from Harborview’s Madison Clinic when they test positive for HIV, but plenty of new immigrants also come directly to Entre Hermanos, knowing they’re already HIV+ and looking to get connected with services. Entre Hermanos was founded as a free HIV testing program for the Latinx community, so they can perform the test on site and provide the necessary documentation to get clients enrolled in state programs.
“I’m proud of what I’m doing,” she concludes. “I’m proud that my clients are trusting me more. And we keep fighting for them. Advocating and fighting for them for whatever is needed.”
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