For all the strides made against HIV, the virus that causes AIDS, science and medicine alone can’t end an epidemic that affects vulnerable populations disproportionately: minorities, young people, poor people and those who lack access to health care.
The International AIDS Conference taking place this week in Washington brims with hope about breakthroughs in treatment and care that allow people with HIV to live longer and healthier lives. Researchers talk optimistically about a vaccine and a cure.
But because of persistent social, cultural and economic barriers, the most at-risk groups don’t receive enough of the treatment and support necessary to save their own lives and prevent the spread of the virus, health providers and community organizations say.
“The science of HIV and treatment is coming along, and everyone is excited,” said Yvette Calderon, the adult urgent-care director at Jacobi Medical Center in New York. “We forget there’s a real-life implementation that has to occur.”
What 30 years ago was a disease that primarily affected white gay men now has a significant effect on far more populations, including gay and bisexual black and Latino men and heterosexual black women. And while HIV was, and still is, considered a big-city problem, it affects impoverished rural communities at an alarming rate, especially in the Deep South.
According to the Kaiser Family Foundation, blacks are eight times more likely to contract HIV than whites are. Black women are 15 times more likely to become infected than white women. Black youths are 10 times more at risk for HIV than their white counterparts are.
Latinos don’t fare that much better. The nation’s fastest-growing and largest minority population – at 16 percent – is infected with HIV at a rate three times that of whites.
Unlike 30 years ago, HIV no longer means near-certain death. But the groups that are the most likely to be infected with HIV are the least likely to get treatment. They’re the least likely to have health insurance. And they’re the most likely to die of AIDS complications.
“No one should have to die of HIV anymore,” said Janet Weinberg, the chief operating officer of the Gay Men’s Health Crisis, a New York-based advocacy group that was founded in the earliest days of the epidemic. “But we’re not going to be able to get to that point in silence.”
Sometimes the barriers are cultural. Traditional, conservative families and communities may be reluctant to have frank conversations about uncomfortable subjects, especially when it comes to young people.
“It’s hard to talk about sex and sexuality, especially in churches,” said Shavon Arline-Bradley, the director of health programs for the NAACP. The nation’s oldest civil rights organization spent three years developing an AIDS manual for churches, the heart of social life for many African-Americans.
The effort doesn’t attempt to change what pastors preach about same-sex relationships or sex outside of marriage, Arline-Bradley said. Rather, it aims to help them address an epidemic that affects their congregations and reframes the fight against HIV as a fight for social justice. She said the message was getting across.
“We talked to over 255 pastors before we started,” she said. “We came to them exactly where they were.”
It’s also challenging for health providers to communicate information about HIV to fast-growing immigrant populations, particularly Hispanics in the rural Southeast.
“The system is not really prepared to deal with this population,” said Leandro Mena, an associate professor of clinical infectious diseases at the University of Mississippi School of Medicine. “Health department clinics don’t have translators.”
Mena, who’s fluent in Spanish, said he gave his cellphone number to Spanish-speaking patients.Calderon said the medical community must do a more effective job of talking to minorities about their risk for HIV and explaining how the health care system worked.
“It’s so complex,” she said. “You need a navigator. Nothing is straightforward.”
Arline-Bradley said physicians should think about HIV the same way as other conditions that affected minorities, including diabetes and cardiovascular disease. Black women and teens, for example, may vastly underestimate their risk of infection.
“You should not have to ask for an HIV test,” she said. “It should be part of routine care.”
Other barriers are social. Gay youths, especially minorities, aren’t always accepted by their families and communities. This can drive them into social isolation and situations – such as unprotected sex or drug use – that put them at greater risk for contracting HIV.
The highest rates of HIV infection are among young black men who have sex with other men.
“Reaching to this group may be a little bit different,” Weinberg said. “Certainly the message that attracts a 50-year-old man to test (for HIV) isn’t what’s going to reach a 14-year-old boy.”
Mena said it was important for teens to have information about protecting themselves from HIV, whether that came from their parents or from schools.
“These children need information in order to make the right choices affecting their health,” he said. “Parents need to understand and learn about human behavior and have age-appropriate conversations with children.”
Among those who have HIV, the stigma around the virus may make them reluctant to act.
“Stigma does discourage testing and stigma does discourage treatment,” said Steve Morin, the director of the Center for AIDS Prevention Studies at the University of California, San Francisco. “So trying to simultaneously work on reducing stigma while you’re also encouraging people to test is important.”
Another barrier is poverty. Blacks and Latinos are more likely to be uninsured or to rely on government programs such as Medicaid. They may lack transportation to medical providers that can treat HIV, especially in rural areas.
“It’s the magnitude of the problem that’s incomprehensible,” said Mena, who’s visited some of the poorest communities in Mississippi, where some homes lack running water.
In theory, the 2010 federal health care law, the Patient Protection and Affordable Care Act, would extend health coverage to vulnerable populations through Medicaid. About one in five people living with HIV already are enrolled in the state-federal program, but about one in four are uninsured.
One of the law’s goals is to expand Medicaid coverage for those whose incomes are up to 133 percent of the poverty level, or about $30,600 a year for a family of four. But some states with high HIV rates, such as Texas and Florida, may decide not to participate. Last month, the U.S. Supreme Court upheld most of the new law but allowed states to opt out of the Medicaid provision.
Guillermo Chacon, the president of the Latino Commission on AIDS in New York, which has launched a bilingual HIV-education campaign, said that with many states facing fiscal constraints, HIV advocates had a tough challenge.
“We’d like to see more culturally relevant initiatives,” he said. “It’s a lot to ask – states, especially, with the economy.”
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