Chicago, United States - Maria Mejia grew up in an abusive household, so at the age of 13 she ran away from home and joined a gang in search of a sense of family. Soon after, she began dating the leader of the gang, a drug user, who infected her with HIV.
Mejia estimates she was infected between 1988 or 1989, when she was about 15 or 16 years old. She says she was diagnosed by sheer coincidence. Tired of the gang life, she decided to move back home and then joined the Job Corps in Kentucky, which required routine medical tests. A week before her 18th birthday, a doctor incorrectly informed that she had AIDS when she was, in fact, HIV-positive.
Distraught and confused, Mejia says she moved back home to Miami to die. Her mother, whom she describes as an "ultraconservative Catholic Latina", told her, "We're going to put this in God's hands", and asked her not to tell anyone in the family. Even though her mother's shame was hurtful, Mejia said she was only trying to protect her.
In 2000, Hispanics became the largest minority group in the US, and they currently account for 16 percent of the population.
According to the Centers for Disease Control, Hispanics account for an estimated 19 percent of people living with HIV (220,400 persons) and an estimated 21 percent of new infections (9,800) in the United States each year. About one in 50 Hispanics will be diagnosed with HIV during their lifetime.
The rate of new HIV infections among Hispanic men is almost three times higher than that among white men, and the rate of new HIV infections among Hispanic women is more than four times that of Caucasian women.
Though many cultures stigmatise HIV, some say that attitudes towards HIV in the Hispanic community are deeply rooted in beliefs about sex.
"Sex stigma in our community is at the root of HIV stigma. Those values are still embedded in our psyche," says Lorenzo Herrera y Lozano, a writer and HIV prevention volunteer who was diagnosed with HIV when he was 21 years old. "For me, it's a reminder of how I violated the social contract of being a Mexican man."
Sex stigma in our community is at the root of HIV stigma. Those values are still embedded in our psyche.
Herrera y Lozano says the shame surrounding HIV and sex stems from Catholicism, which holds that the primary purpose of sex is to procreate. "How do we hold our culture close to our heart, and how do we hold it to the light?" he asks. "As we continue to push against conservative norms, we will see more advances."
According to the CDC, the stigma associated with HIV and homosexuality can contribute to the spread of HIV in Latino communities. Machismo attitudes, for instance, can keep some men from acknowledging risky behaviours, such as male-to-male sexual contact.
Before he informed his mother of his diagnosis, Herrera y Lozano says he first had to tell her he was gay. He says she was more concerned about his sexuality and asked whether he could also be treated for being gay. His father, who is older and a conservative Mexican man, still doesn't know about his son's HIV status. Herrera y Lozano says he believes it's easier for both of them to keep it this way. "All he had was the information that the media provided," he says.
Viviana Maldonado has experienced HIV stigma second-hand. When she was 14 years old, her father tested positive for HIV. He was married, had three children, and was a well-respected pastor in a rural Nebraskan community. She says he contracted the disease in the 1980s, but was not diagnosed until 1995 because of shame, guilt, and denial. To this day, she and her family still don't know how he contracted it.
Though her father's family and community were supportive throughout the entire experience, Maldonado says her father never talked about the origins of the disease.
"My mom asked him, but he would not budge. Deep down he had that Catholic mentality," she says. Maldonado says she continues to grapple with the aftermath more than a decade after her father's death. "I struggle with it more now as an adult. I feel like I'm not allowed to talk about it," she says.
"To truly turn the tide on HIV in the Latino community, we must also confront the harsh social and economic realities that place some Latinos at greater risk for HIV," Janet Cleveland, a deputy director of HIV/AIDS Prevention, told Al Jazeera in an email.
|Array of HIV drugs saving lives
Cleveland points out that - in addition to the fear of stigma - access to healthcare, language barriers, and concerns about immigration status are significant factors contributing to HIV rates.
According to Planned Parenthood, Latinos are the least likely of all ethnic groups in the United States to be insured. More than a quarter of Latinos also live in poverty, which can prevent them from accessing sexual and reproductive healthcare. Consequently, Latinos experience higher rates of sexually transmitted infections than most other groups of people in the US.
Low-income immigrant women have even higher rates of uninsurance: 60 percent of low-income, non-citizen immigrant women lack health insurance, which is nearly twice the proportion of low-income women born in the US.
Lillian Tamayo, president and CEO of Planned Parenthood of South Florida, says her organisation partners with Latino organisations all over the country to tailor their programmes for the Latino community. In addition to providing sex education, HIV testing, access to contraception, and helping patients who need additional care, Planned Parenthood also offers workshops, training, and events to help parents talk to young people about sex.
"We're not having these conversations with these young people about their bodies. Because of that, we're putting these young people at risk," she says.
Meanwhile, Maria Mejia has used her experience with HIV to become an educator and international social media activist. She is especially passionate about educating young people because she believes many of them "are not respecting the virus anymore".
Mejia says they need to see someone who looks like them and speaks their language in order for the outreach to be powerful. "You can have all the experts you want, but at the end of the day, they still think it's not going to happen to them," she says.
Planned Parenthood also uses a "Promotores" model to more effectively reach Latinos. The programme trains people in the community to share their sexual and reproductive health knowledge through group presentations, house parties, and one-on-one outreach.
Tamayo says this can break down barriers since there are many areas traditionally off-limits in Hispanic culture. Women, for example, are often embarrassed to talk about their bodies. Because the model is informal, it can make people feel more comfortable sharing their experiences.
"By telling our stories, we humanise the condition," Mejia says. "I wanted to create spaces that didn't exist when I tested positive."