For HIV-Positive Latinas in the Bay Area, Picking Up Where Systems Leave Off

By Olivia Ford

From The Body —October 17, 2011

The state of California has the largest Latino population in the U.S., and was second only to New York in AIDS cases at CDC’s most recent count. While San Francisco County has the second-highest HIV/AIDS rate in the state, it is also home to a plethora of renowned, high-quality HIV/AIDS services. Its neighbor across the Bay, Alameda County (home to the cities of Oakland and Berkeley), the state’s seventh largest county, also sports its fourth-highest rate of AIDS cases, and yet only a handful of HIV/AIDS service organizations are based there.

According to local advocate Agripina Alejandres, “There are a lot of places to go for help [in San Francisco], but they’ve mostly been for gay men” — and services for women are sorely lacking. Enter WORLD (Women Organized to Respond to Life-threatening Disease), which has made its home in Oakland since 1991.

In 2000, to respond to the growing HIV rate among Latinas, WORLD expanded their staff to include a Latina Peer Advocate. In this role today, Alejandres assists Latinas — many of them pregnant and/or recent immigrants — in navigating social and medical services.

Tell us about the work you do at WORLD.

The majority of the women I work with test HIV positive when they’re pregnant. Others get sick and go to the ER and that’s where they find out their HIV status. Otherwise they would never have been tested. They don’t have much information about HIV.

The peer advocates at WORLD have connections with social workers and clinics. I have a few days a week I spend at different clinics, but when they have a newly diagnosed person, they may also call WORLD directly, because they know we’re living in similar situations to our clients, and we can relate to them. We can say to them, one-to-one, “I’ve been there. And I’m getting along. And you can do it, too.”

There’s still a lot of stigma around HIV among women I work with. People don’t really know how someone gets HIV. Over here in the U.S., everything is really expensive. A few families might be living together in one apartment to save money. If a person has HIV and is on medication, they feel they have to hide it from the people they live with, and lie about it. Most people work a lot and don’t have the time to pick up their meds. The pharmacy may offer to deliver them to the house; but they don’t want that option either, because somebody else might receive the medication and find out they’re HIV positive. That need to hide can lead to poor follow-up care, and to missed med doses.

This is where I come in. I talk to my client and we figure out how they can get their medications without being found out. Sometimes I pick it up for them. The pharmacies in the area know me and the relationships I have with clients.

One Saturday a month I do a support group just for Latinas, in Spanish. We invite people from San Francisco, and from other counties around the Bay. We figure out what women need to be able to attend a support group and get this time to themselves: We offer child care, and sometimes we help out with public transit fare. I offer classes in addition to talking about HIV — fun things. We make jewelry, knit provide classes such as yoga, meditation, nutrition.

Can you describe a typical day at your job?

Yesterday I worked with a pregnant client. She’s new to the area, doesn’t speak English and doesn’t know how to get a birth certificate for her baby, so I went with her to the Office of Records, helped her with translation. After that, I had another pregnant client who hasn’t been to the doctor, so I went with her, as well as her partner, who needs to get an HIV test. I spent about three hours with them — translating what the doctor says about her medications, talking to her partner about how HIV is transmitted and what they need to do to be safe, and then helping them find services like a good clinic and pharmacy.

I work with a lot of undocumented people, and I work with an agency that works around immigration. I refer my clients there; I make their appointments and go with them and help them get their papers. Another client just moved from another county, and there’s no space in this county’s schools for her kids, so I helped her find an online program for her kids to study at home. I worked with her for the entire process.

It’s not all directly related to HIV, but these are things that women with HIV are dealing with, and stressing themselves with. We need to find solutions so that people can get care without stress. Any of these factors can affect a woman’s ability to take care of her own health.

Some clients learn fast; they get the system and are able to get along. After a little while we might only call them once or twice a month to check in. We put them on track, but still, once in awhile, they need emotional or other kinds of support. I have many women where we’ve kept up that relationship.

Some others we as peer advocates work with more closely on almost a daily basis. If they’re newly diagnosed, you have to work with them just about every week, sometimes two, three times a week. Some women just need much more support. I’ve known one woman for more than five years. Because she doesn’t speak any English, I still go with her to the doctor every time. I still have to arrange for her medications.

What’s been your experience working with Latinas who are undocumented immigrants? Are there services available for them?

Undocumented women may be able to get medical services and access medication, but they often have no economic support, which makes it harder to treat them. If they have the choice of missing a clinic appointment — when rent is due and they need to buy food — or missing work, they’ll miss the appointment.

Some people come to the U.S. to work, make money and then go back home. Now, when they find out they have HIV, it’s like that chance has gone away. They may never be able to go home, because they don’t have papers to go for a trip and come back. It’s really stressful for people living over here with the virus who have children and family back home, and they have no idea if they’ll see their children again.

In many of the places where my clients come from — El Salvador, Nicaragua, Guatemala, Mexico, other places — the country is so poor, there’s no medication. There are no services. People don’t understand HIV. So people stay here for services, but they can’t go home. It breaks your heart, because there’s no way that you can help. You can listen. You can give some support and hope.

I’ve known a few clients that have been given political asylum, but those cases are hard to prove. I know people that help women get papers because of domestic violence. I’ve had success in some cases. But there are so many I haven’t been able to help.

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