HIV/AIDS Hits Minorities and Nonprofits Hard

It took two months for Julialene Johnson, 50, to get her blood-test results, one year for her to tell her 12-year-old son she was HIV-positive, and two years to share the news with her three sisters and two brothers.

Johnson, then a cocaine addict in recovery in Boston, didn’t want to believe she had AIDS. As something kept “eating her inside,” she took a test at the Family Health Center in Worcester, Mass., during Halloween day of 1999.

 

The life-changing news, that she was HIV-positive, came nearly two month later, on Christmas Eve.

“I cried for half [an] hour. But I needed to put the fact that I was HIV-positive in the back of my mind, to let my son have a good Christmas.”

 

Johnson is one of the 600,000 African Americans currently living with HIV/AIDS in the US, according to a report funded by the Ford and Elton John foundations, called Left Behind! Black America: A Neglected Priority in the Global AIDS Epidemic.

 

About 30,000 new HIV-positive cases appear among African Americans in the US every year, according to a survey of the US Centers for Disease Control and Prevention (CDC) in 2006.  

 

Non-Hispanic blacks accounted for 49 percent of all reported cases of HIV/AIDS, according to the same CDC survey.

 

The CDC estimates that the country had about 56,300 new cases of HIV in 2006.

 

Massachusetts, the state with the 10th-highest number of HIV cases, registered 18,896 infections in 2005. Of those, 53.4 percent were white; 25.9 percent, black; and 19.7 percent, Latino.

 

For Johnson, who used to be a home health aide and also has lupus (a disease that, like AIDS, attacks the immune system and has no cure) coping with a stigmatizing disease has been a long, learning process.

 

As a cocaine addict, she gave herself several months to get “clean and sober.” Her pivotal test of courage came when she spoke to 200 people at the Massachusetts State House on behalf of all of the states’ HIV-positive persons, in April of 2000.

 

“One thing that this disease has done is teach me that I have a voice. I don’t have to allow anyone to push me down or leave me in a corner. We’re all human beings and we have rights,” she said.

 

In 2002, Johnson volunteered as a peer person for AIDS Project Worcester, a nonprofit founded in 1987 by 50 people, 40 of whom were gay men infected with AIDS, most dead within a year. Today, the agency treats 1,200 HIV-positive people per year.

 

Latina women make up 40 percent of the 525 HIV-infected patients the agency treats every month; African Americans account for 14 percent.

 

Roughly 51 percent of HIV-infected persons in Central Massachusetts (where Worcester is located) have a history of drug use or have a sexual partner who is a drug user.   About 38 percent are heterosexual, says Joe McKee, the nonprofit’s executive director,

 

But McKee, a veteran in the health care field, still recalls a time when AIDS was seen as a disease that only “bad people” contracted.

 

Although such a stigma sounds like a theme of the past, it still poses a major obstacle for McKee’s team at the AIDS Project. 

 

In some immigrant communities, like those from sub-Saharan and other African countries, women cannot seek preventive education about HIV, says McKee, because of the stigma that a moral woman would not want to know about HIV prevention.

To woo the support of faith-based communities for HIV education and prevention, cultural adjustments have been necessary by the Worcester nonprofit.

While prevention and educational language was tailored for evangelicals at black churches, condoms were out of the picture for Catholic Latinos.

In Lowell, Mass., the most effective strategy was to bundle up HIV screenings with health fairs, says Karen Peugh, an HIV project coordinator for the Lowell Community Health Center.

For the past eight years, her counseling team has developed strong ties with Cambodian monks.

But it took a year for the first talks with Brazilian evangelicals to gain some traction.

"After several focus groups with the Portuguese-speaking community, we gathered six pastors, but only four of them committed to the project," says Lisa Najarian, another coordinator for the LCHC.

The community center conducts HIV screenings tied to important dates for immigrants, like Latino HIV Awareness Day, which takes place every year on October 15.

The Lowell nonprofit treats 375 new HIV patients every year, 45 percent white, 35 percent Latino, 10 percent African, and 8 percent Asian.

Patients prize the center's diverse staff, one that reflects the people of local ethnic communities.

But sometimes, being an immigrant who is HIV-positive -- and getting your health care from someone who's from the same corner of the world -- may not be good.

"The other day, an African couple was in the waiting room to get tested for HIV. When they saw that they were going to be attended by an African woman, they said, 'Oh, we're not in a hurry, we can wait,'" recalls Peugh.

McKee has developed a less-than-perfect -- but effective -- recipe for servicing a diverse population.

"You have to design prevention programs that are effective in that specific community, but also that follow through with what they are learning. That's the only way people are not going to be penalized for participating."

Still, many immigrants do what Julialene Johnson did. They never go back to get their blood-test results.

"But we are willing to meet them at Burger King, a Stop & Shop, a restaurant or a park. The most important thing is to know their HIV statuses," said McKee.

Now Johnson, who every night takes a pill of - Atripla, the first AIDS drug of its kind to come in pill form - complains about the drug's side effects, including a boost in her appetite, nervous imbalances, and insomnia.

As for her son's response upon knowing about her disease, it was as normal as life can be for Johnson.

"Well, Mom, you just need to take care of yourself the same way you treat your lupus," she recalls him saying.

"It turns out my son still loves me," she concluded.

Learn more about AIDS Project Worcester, including its parent-counseling program for Latina mothers, at www.aidsprojectworcester.org or call (508) 755-3773.

Karen Peugh and Lisa Najarian, HIV project coordinators for the Lowell Community Health Center, can be reached at (978) 322-8655.

 

source:  EthnicNEWz.org

 

Copyright 2008 New England Ethnic News, EthnicNEWz.org. All rights reserved. This material may not be published, broadcast, rewritten or redistributed without the express permission of the source.  Contact NEWz at EthnicNews {at} yahoo {dot} com for more information.

SEE ALSO:

 

AIDS Programs for African Americans in Hartford Face Funding Instability

Health Advocates Call for HIV Tests for Asians

Health Nonprofit Helps Youth and Trains Groups that Serve AIDS Patients

Mass. Secretary of Health JudyAnn Bigby, MD, on the Persistence of Racial and Ethnic Health Disparities

Community Groups Offering HIV Testing May Be Effective in Identifying, Helping HIV-positive Racial Minorities

Mass. Health Report Reveals Disparities in State by Race, Region and Problem

 

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