La Familia Bonita

Maria Mejia's childhood in Miami was far from idyllic. By the time she reached 14, Mejia couldn't stand her home environment which included a strict father and a sexually abusive uncle, so she ran away from home. Mejia says she ended up running with a gang until the age of 18, when she met her first boyfriend. In the early 1990s, after four years away from home, Mejia decided it was time to turn her life around. She returned to her mother, who by then was separated from her father. Part of the young woman's plan to turn over a new leaf was joining Job Corps, a vocational education program for young people. She went to a Job Corps facility in Kentucky for medical screening and the typical 60 days of training.

When the doctor tried to get her to come in to the clinic after the routine screening tests, Mejia initially ignored his requests out of fear; a smoker, Mejia was afraid she had cancer. Instead, when the doctor was finally able to sit her down, she learned that she had HIV. “I was not a drug user, and back then it was still thought of as a gay man's disease,” Mejia says. “It's not that I was sick or anything. I never thought it could happen to me.”

Despite being assured that she could stay at Job Corps, Mejia was so devastated that she quit the program and again returned to her mother. “I wanted to die at home and not in Kentucky,” she says. Mejia packed up her life and headed back to Miami. She then broke the news to her mother, who offered her full support. However, Mejia's mother asked her not to tell the rest of her family about her HIV status out of fear that she would be ostracized. “It came from a good place,” Mejia says. “There was a lot of stigma back then.” She said, “I believe you're not going to die from this, but you must not tell anyone. If you get sick, we'll tell them you have another disease. We'll do the research.”

Mejia, her mother, and her younger brother moved to Colombia, their native country, where she lived for the following decade without medication. Instead, Mejia's mother opened a health food store and used the products to help her daughter live the healthiest life possible. Mejia and her mother did disclose her status to an uncle, and a local doctor who regularly monitored her cell counts. Mejia and her family also used their faith to ground them through the rough times. 

Families in Crisis

Mejia's experience is just one example of how Latin families band together in times of crisis. And that's how researchers are seeing HIV among Latinxs—It  affects not only the individual diagnosed but the whole family structure. The National Council of La Raza, a leading advocacy organization for Latin Americans, says families are the most influential part of life for Latinos. The organization advocates getting more sex education into Hispanic homes, where addressing such topics is often avoided due to religion or conservative values. La Raza also suggests finding ways to empower women — frequently the hub of family life — to be vocal ambassadors for educating others about HIV in casual atmospheres and small gatherings. The key is getting family involved in HIV prevention and care.

In a 2015 Morbidity and Mortality Weekly Report, the CDC revealed that Latinxs continue to bear a disproportionate burden of HIV despite declines in recent years. Between 2008 and 2013, the rate of HIV diagnoses in the Latino community fell from 28.3 to 24.3 per 100,000 individuals (from .0283 percent to .0243 percent). 

Gerardo L. Angulo, a clinical supervisor for Latinos Unidos Contra el SIDA (Latinos United Against AIDS), part of Chicanos por la Causa in Phoenix, says his organization is already adapting to that type of family-centered counseling for those who have been newly diagnosed with HIV. Angulo says Hispanic people tend to face pressure to live up to their parents' expectations. “Being Latino myself, I can tell you that you grow up trying to be the perfect student, the perfect son, the perfect brother,” he says. “You just constantly seek perfection.” That pressure makes it harder for a son or daughter to disclose that they are HIV-positive. Once they do, in Latinx families, diagnosis and treatment become something the entire family faces together. Angulo recalls one patient who found out he was positive. His entire family came in to LUCES to learn more and help support him through the counseling process. “They were all devastated—his wife, his mother, his father, siblings,” says Angulo. “But they were all there, and we counseled them together on what the options were. To them, the attitude was, 'Oh, my God, my son is dying.' For them, it was a tragedy. They were all crying throughout the counseling sessions, but they were also like, 'It doesn't matter, we're going to love him no matter what.' ”

For that family, a crisis was averted when it turned out the man was incorrectly diagnosed—he had received a false-positive test result. The trauma for this family, however, was all too real. Angulo says the incident demonstrates the close bonds within Latinx families but adds that it could have turned out differently in another family, due to the minimal amount of education on HIV that has been directed at Latinos in the United States and elsewhere. “There are still issues with ignorance around contracting the virus,” he says. “Sometimes people still avoid drinking from the same glass as [an HIV] positive person. They say, 'I don't want you around my children.' Unfortunately, when there's a lack of education within the Latino family unit, they don't understand they can deal with the issue [together].”

La Doctora Is In

Isabel G'mez-Bassols, Ed.D., (pictured above), has been making it her mission to educate Latinx parents and families on being more accepting of both gay family members and those with HIV. Through her Miami-based radio show, Bassols doles out advice on a range of topics like relationships, communication, and self-esteem to her millions of Spanish-speaking listeners across the country. But as her relationship with her gay, HIV-positive son, Eric Vasallo, has matured, she has begun educating parents who have just learned that their son or daughter is HIV-positive. Fourteen years ago, Bassols decided it was time to share her family's story at an event for Latinx youth where she was speaking. “I told them, 'I have a gay son who is HIV-positive,' ” Bassols says. “Even now you hear my voice shaking. [Learning that he is positive was] the hardest thing I've gone though, but I love him, and he believes in himself because of the love my family gives him.” After the speech, Bassols says, she was greeted by throngs of attendees who embraced her, many in tears. “They told me, 'I wish I had a mother like you,' ” she says. “I told them to tell their mothers. Or in some cases, if it's going to be difficult, I advise them to have a sister or brother help them tell their family members one by one.”

Coming Out

Mejia, the woman who lived with HIV in secrecy for a decade, has similar advice for those who are ready to tell their family about their status. “Come out slowly,” she says. “Don't get the whole family together and tell them in one place.” Mejia followed her own advice when she was ready to end years of hiding. As time progressed, her condition eventually worsened, so she left Colombia to get medical care in the U.S. It was at this point that Mejia says she felt compelled to tell a few more family members about her HIV status, at first gauging what their reactions would be.

Her volunteer work as an HIV counselor came in handy as she slowly started informally educating her cousins, aunts, uncles, and grandparents about the basics of HIV. Then she told a small handful of close relatives that she was HIV-positive. She says they were all supportive of her, but she quickly learned to be ready to comfort shocked family members. “They always start crying!” she says. “I tell them I've been dealing with this for a long time and that it's OK, but it's always still a shock.”

In 2010, when an in-law died of a brain tumor, Mejia decided it was time to stop hiding her HIV status from the rest of her family. “I thought to myself, Why can people say they have family members with other illnesses, but I can't say I have HIV? I was fed up, and that's when I [decided] in 2011 was when I would tell my family completely. If they're going to discriminate against me, that's their loss.”

In her years living with the virus, Mejia has educated many young people about HIV and has endured decades with the virus. She's faced violence and pain. She's fought for success as a business owner. As with a lot of Latinx folks, her mother has been in her corner guiding the way through it all. “She's very strong and educated about it now,” she says. “At first she was scared for me, because she didn't want anyone to hurt me or my feelings. But she knows now that my mission is to save lives, and no one is going to stop me. And she's dealt with it as best as she can. She's been my rock.”