Multiple barriers prevent minorities’ early treatment
AIDS stigma, lack of transportation top list
The most recent HIV/AIDS statistics from the Centers for Disease Control and Prevention (CDC) show that HIV is the leading cause of death for African-Americans, ages 25-44, in the United States and the third leading cause of death for both African-Americans and Latinos in the 35-44 age group.1
A recent CDC study at 16 sites found that African-Americans and Latinos were more likely to be tested late for HIV than were whites, and previous research has shown that HIV-infected African-Americans and Latinos are more likely to be uninsured, to have not received antiretroviral drugs, to lack transportation for visiting doctors, and to have had recent hospitalizations.1
All of these factors suggest that HIV prevention efforts targeting minority communities have some major infrastructure obstacles to overcome, but AIDS activists say that there also are many social and cultural barriers to adequate HIV care among communities of color.
One social barrier to HIV testing in small rural communities is that people fear their neighbors will learn if they are HIV-positive. When they are willing to be tested, they may drive to another state to keep their confidentiality, says Darryl Cannady, executive director of South Central Educational Development in Bluefield, WV.
"What you find in West Virginia in working with communities is people are really proud down there," he says.
For example, Cannady had an African-American HIV-positive client whose family didn’t want him to disclose anything about his disease to others because they thought it would reflect badly on them, he says.
Even when federal and state funding is available to provide antiretroviral drugs and treatment, some in the African-American community are unwilling to submit to HIV treatment because of a skepticism about the government and case managers, he points out.
"Although we may educate them about medications, they think of it as a government thing," Cannady explains. "They think you have case managers following you around and making sure you are taking your medications and making doctors’ appointments, and it’s perceived as a control issue."
All of these factors contribute to people not being tested, diagnosed early, getting into treatment, and changing behaviors, Cannady says.
"I think it’s denial, and it comes down to not wanting to hurt their families and the ones they love, because once the diagnosis is made, your world totally changes," he says.
Malik Blackmon, an AIDS coordinator with Arkansas HIV/AIDS Task Force in Little Rock, has had similar experience with rural minority populations who unaware of their risk for HIV.
Then the people who are HIV-positive, but have not been tested, will spread the disease throughout the rural community, he says. "The problem is that African-Americans in rural areas are not aware that we are at risk now. When I tested positive 16 years ago, the virus was labeled as [affecting] gay white males, so we disconnected from awareness at that time."
Many people in the African-American community continue to believe they are safe from HIV if they are not gay or injection drug users, Blackmon says. "There’s a lot of knowledge about HIV out there, but what good is it if we don’t acknowledge our risk categories?" he asks. "Engaging in sex, period, is a risk these days."
The Arkansas HIV/AIDS Task Force is funded through the Minority AIDS Initiative, but it only receives $25,000 a year, which is a paltry amount when there’s a need for comprehensive AIDS outreach, Blackmon says.
Moreover, even when outreach workers convince people to be tested, they can’t promise them rapid access to HIV care and treatment because the state has a waiting list for ADAP drugs, he says. This problem was exemplified recently by a 64-year-old woman who had full-blown AIDS, which she didn’t know she had until she was admitted into the emergency room, Blackmon says.
Other barriers to early testing and care include transportation problems, particularly in rural Arkansas, where people may not be able to get to a clinic to be tested or treated for HIV, he points out.
"We need advertisements that target African-Americans with a stronger message," Blackmon says. "We need something that is like a lightning bolt to get their attention."
In San Diego, AIDS organizations also have witnessed a trend of poor and marginalized people of minority communities coming very late into HIV treatment.
Migrant Latino workers who come to the Pacto Latino AIDS Organization of San Diego for help with housing and other services sometimes die of AIDS before they can start HIV antiretroviral treatment, says Julio Mauricio, executive director. He tells the story of a 53-year-old Latino man who worked for a landscaping company. The man one day ended up in the hospital and didn’t know why he was sick until he was diagnosed with HIV.
"His employer tried to help him, and then he got sick and was sent to the hospital where he was diagnosed," Mauricio says. "Then he came into our program, and we tried to help him find permanent housing instead of transitional, and he was there for three weeks before he relapsed and went back to the hospital, where he died."
The man died within a month of his diagnosis and never had the opportunity to begin taking antiretrovirals, he adds.
Besides providing transitional housing for AIDS patients, Pact refers patients to support groups, health care, case management, and food delivery services. The organization also provides prevention information to Latinos and migrant workers. People at risk for HIV in minority communities often are ignorant or afraid of their own risk for infection because of the stigma that continues to impact spread of the epidemic, outreach workers say.
That’s why HIV-positive outreach workers can have a big impact, says Tony Dorsey, an outreach worker for FACT, which stands for Fighting AIDS in our Community Today, of Las Vegas. FACT provides outreach services to HIV-infected people, particularly African-American men and women.
"The idea is to get someone out to partner with these people once they are identified as HIV-positive," Dorsey says. "We hold their hands and give them compassion and concern about what they have to go through."
Dorsey’s empathy is based on his own experience of being HIV-positive for 16 years, including the last few years of having to spend 10 hours per day on dialysis due to kidney failure resulting from some of the early HIV antiretroviral treatment he received.
Test Positive Aware Network of Chicago provides support groups, prevention for positives, and other HIV community services to minorities and others infected with HIV, says Carlos A. Perez, information services coordinator for Test Positive and the editor of the Chicago Area HIV Services Directory.
Since there are increasing numbers of new HIV infections among Latinos, the organization has created prevention materials that are in Spanish and has targeted the Latino community, as well as the African-American community, for specific prevention campaigns, he says.
"We’re a peer association, and we’ve all gone through a lot of these things," Perez says. "I was tested positive in 1984, but traced my risk factor back to 1979 or 1980, so we share our knowledge with anybody who is new at it."
The most recent HIV/AIDS statistics from the Centers for Disease Control and Prevention (CDC) show that HIV is the leading cause of death for African-Americans, ages 25-44, in the United States and the third leading cause of death for both African-Americans and Latinos in the 35-44 age group.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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