Valerie J'menez knows HIV well. The 40-year-old native New Yorker and boricua, a person of Puerto Rican ancestry, tested positive 17 years ago. Now an activist, J'menez, who works as an organizer for the Campaign to End AIDS, also knows that people of color are at high risk for exposure to HIV.
'We need to start getting the prevention message out there and making sure that people get tested, especially people of color'the Latinos and the morenos [people of African descent], who are at the highest rate of infection'and the young people too,' J'menez says.
For the past decade many organizations across the country have focused specifically on ways to target minorities to educate them about HIV'encouraging them to get tested and, if they're positive, to get treatment. The numbers are not encouraging, though. Health officials estimate that a quarter of all Americans who are HIV-positive do not know it; an even higher proportion among African-American men who have sex with men'two thirds'have never been tested, according to a 2004 study. For those reasons, among others, activists say there is still more to do regarding prevention and testing.
Activists claim that some campaigns and outreach efforts have been very creative and successful. To target minorities, some agencies are using venues like bars, concerts, and dance clubs; others go to churches, supermarkets, laundries, or beauty salons to reach people. And others use the ethnic press to talk to people in their native languages.
And in major cities newly arrived immigrants are likely not to get tested because of the lack of information, cultural issues, fear, lack of medical services, and far more.
'All the work that we do relates to some of the black and Latino issues regarding HIV,' says Kevin Huang-Cruz, a policy specialist for the Asian and Pacific Islander Coalition on HIV/AIDS, 'but we're dealing primarily with immigrants.' Huang-Cruz's agency provides HIV information, case management, and medical care, among other services, in languages such as Hindi, Bengali, Mandarin and Cantonese Chinese, Japanese, Korean, Tagalog, and Urdu.
'There are many immigrants that are not necessarily documented who tend to avoid seeking medical care until they get very sick,' he says, adding that many fear deportation if they go to a hospital.
Indeed, according to 2004 New York City health department statistics, 1,038 New Yorkers'about three each day'found they were already sick with AIDS within a month of HIV diagnosis.
'It's very disturbing to us when we see the statistics,' says Ana Oliveira, executive director of Gay Men's Health Crisis, the nation's first AIDS service and advocacy organization. 'Gay men of color and Latino gay men are disproportionately impacted that way. But there is also a percentage of women'a percentage of white gay men too'who also get diagnosed at the same time they're already sick. But the proportion of black and Latino gay men is much higher.'
Some studies have shown that if people know their serostatus, they are more likely to reduce behaviors that transmit HIV to others. And, as treatment advocates hope for, reports also indicate they are more likely to obtain medical attention, allowing them to get healthy and live longer. For example, a study by Lancaster General Hospital in Pennsylvania has revealed that if doctors in the United States would give an HIV test as part of a medical routine'even if the patient has only a fever or other signs of viral illness'they could save hundreds of lives a year. And many clinics and hospitals now are making HIV testing a routine. Oliveira says that's a healthy reaction, but it needs to be more strategic.
'We believe people need to clearly know they're being offered a test and clearly choose that,' she says. 'It is very important for practitioners to be universally alert and universally trained to screen for HIV risk and then suggest a test.'
Oliveira is not alone. Other activists share her strategies. Gary Bell, executive director of Blacks Educating Blacks About Sexual Health Issues, based in Philadelphia, welcomes the routine test as long as there is some additional training for the staff at hospitals and clinics so that they can thoroughly explain the importance of testing and ramifications if a person tests seropositive: exactly what the results mean and what treatments can do for people so that they don't freak out.
'I hear horror stories from women that they've been told they're HIV-positive when they're in labor,' he says, adding that that step alone is not enough'to only give a person the test. 'There needs to be some kind of counseling that goes with it, even if the person tests negative.'
Manuel Rodr'guez, the program manager of the HIV health education division of Broward County's health department in Fort Lauderdale, Fla., says health care providers need to take a more active role. 'Maybe that's what is missing. In the Latino community people have a great respect for the doctors, For some of them, [the doctor] is like an autoridad,' he says, referring to the patients' sense of respect for an authority figure.
Some might ask, 'What about the thousands of people who have no health care access?' For that Oliveira has an answer too: 'What we need to do is fund community-based organizations. Because they are in the community, they are in the places of people's lives that are not medical settings. It's very important to fund the outreach programs.'
Despite the odds, which include funding cuts that many AIDS agencies are facing, Oliveira says the fight against HIV is an issue of social justice that needs to continue. 'We know that people don't contract HIV because they're bad people,' she says. 'They contract it because of failures in the support systems, the options, the sense of value of their lives. So we need to not just prevent HIV; we need to change those conditions in their lives.' She hopes that helping to bring about that kind of change will be her legacy at GMHC, for the sake of all HIV-positive individuals who are currently being reached too late.