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The new face of HIV/AIDS in Jacksonville (Black women): Rising disease rates strip away our stereotypes
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Posted: October 3, 2010 - 12:00am
http://jacksonville.com/news
In 2008, the year with the latest data available, HIV/AIDS was the leading cause of death for African-American women ages 25-44 in Florida, according to the state's health department, with 155 out of 754 deaths caused by HIV/AIDS. Meanwhile, HIV/AIDS was the third-leading cause of death among black men in that age range, with 170 deaths out of 1,067.
So what are black women supposed to do if the odds aren't in their favor? Learn more about the disease and its causes - and make sure they and their partners get tested for HIV/AIDS and STDs, even if there are no present symptoms, Glenn said.
"We have to protect ourselves in order to protect our children, so we need to ask these questions when we get into relationships about sexual pasts and testing," she said.
the easiest thing that can be done is to "normalize" the disease - have an open dialogue about HIV/AIDS with partners, friends and in schools, and make sure women get tested with each physical.
An open dialogue about HIV/AIDS in the community could reduce the stigma and fear, she said - the biggest obstacles in the way of abating infection rates.
this table shows in increase in women with AIDS from 2008 to 2009 suggesting Black women are experiencing increasing AIDS in this community since this article says 76% of women with HIV are Black in this area and 81% of women with HIV/AIDS.
Among tables adorned with Hawaiian centerpieces, Linda Williams recently talked to a handful of people at a breakfast on the Southside. She'd expected at least three times as many audience members but still spoke enthusiastically, waving her hands in front of the pink pearls that matched her blouse.
"It starts with the people in this room," she said. "I wanted to wake the sleeping giant."
The beast? Disturbingly high numbers of deaths and infections from HIV/AIDS in Northeast Florida among African-American women, she said. It's become the leading cause of death for younger black females in Florida, and the second-leading cause in Jacksonville.
It's being fed by numerous factors, experts say: Stigmatization, apathy and lack of awareness. High incarceration rates for black men, which can lead to a smaller pool of black men as sexual partners, some of whom are positive. High number of people with sexually transmitted diseases.
Meanwhile, the disease continues to eat up millions of tax dollars for patient care.
Williams founded the Northeast Florida Women's AIDS Alliance in April, and she's determined to raise awareness to curtail Jacksonville's infection rates, particularly among black women - women like Williams herself, who was diagnosed in 1994.
In 2008, the year with the latest data available, HIV/AIDS was the leading cause of death for African-American women ages 25-44 in Florida, according to the state's health department, with 155 out of 754 deaths caused by HIV/AIDS. Meanwhile, HIV/AIDS was the third-leading cause of death among black men in that age range, with 170 deaths out of 1,067.
In Duval County, for the same demographic group, it was the second-leading cause of death behind all cancers in 2008. It accounted for 10 deaths - more than heart disease, breast cancer or car accidents.
Infection cases for black women are increasingly disproportionate to their population. In Duval County, black women are about 32 percent of the female population, but in 2009 represented 76.5 percent and 81 percent of the female population infected with HIV/AIDS, respectively.
Women testing positive generally are employed, have families and are often in monogamous relationships, said Nicole Richardson, HIV/AIDS VOICES program coordinator at the Women's Center of Jacksonville. According to the Centers for Disease Control and Prevention, about 80 percent of black women are infected by their male partners.
BOB SELF/The Times-Union
Mary Glenn takes a phone call Sept. 30 at Positive Healthcare in Jacksonville. Glenn, who is living with AIDS, is a volunteer at Positive Healthcare. The organization assists those with HIV/AIDS in finding resources to aid in their management of the disease.
Three decades since HIV and AIDS were first detected in the United States, a host of medical advancements and public awareness campaigns have taken aim at the disease. Yet people are still testing positive at high rates, particularly black women in Jacksonville.
Few are talking
Williams only went public in the past year about being positive, and she choked up recently as she talked of becoming infected by a male partner suspected of having sex "on the down-low" (with other men). She took care of him for a year before he died.
To convince her community of the severity of the issue, she persuaded Mayor John Peyton this year to declare Aug. 13 as Women's HIV/AIDS Awareness Day. But that was the greatest achievement that came from her alliance, which she is dissolving because of a lack of funding and resources, she said.
The stigma among black women "has silenced their voices," Williams said, and that's contributing to the community being continuously hit with the disease. In fact, the CDC estimates black women are 20 times more likely than white women to become infected.
Manuel Andrade, a case manager at Northeast Florida AIDS Network, said initial messages in the 1980s that HIV/AIDS didn't hit the black community hard were harmful and became ingrained in the minds of many African-Americans.
It's been difficult to stamp out those first impressions:
- John Essex, also a case manager at the AIDS network, tells of a client whose husband scrapes off the prescription labels from her medication so no one finds out she's positive.
- Lolita Hill, director of AIDS Outreach with River Region Human Services in Jacksonville, talks about several classmates who died from HIV/AIDS whose families would only tell her they had cancer or kidney disease.
- Black women financially dependent on their spouses worry about the consequences of disclosing their status - or of insisting on safe-sex practices from their partners, Hill said.
Recently, a woman about 25 years old came to River Region and tested positive for HIV, Hill said. After she asked the woman why she had unprotected sex, the woman said her boyfriend pays the rent and takes care of her children. Her boyfriend told her about his positive status but said he was taking his medications, so she couldn't be infected.
One Jacksonville woman, who declined to give her name because only her family knows she's infected, said she was afraid to disclose her status to others because she's fearful of the questions that will follow, such as whether she was promiscuous or a drug user. She's also heard people say cruel things about those with HIV/AIDS.
"Just imagine, you've always got a secret. People will talk about HIV and AIDS, and you have to sit and pretend," she said.
'People really aren't OK'
Mary Glenn, 57, lives on the Westside. Her skin is blotch-free and smooth, she's at a normal weight and has had AIDS for 20 years.
She was infected by a boyfriend who found out he was positive after donating blood and got a letter in the mail. He didn't disclose his status before becoming intimate with her, she said.
Every day, Glenn must give herself an injection in the stomach and take four pills. She's had cancer and gone through chemotherapy, but she's surpassed doctors' expectations since her diagnosis in 1990, when she was told she had about five years to live.
It's women like Glenn who are changing the face of HIV/AIDS - no outward symptoms, which gives people the impression the disease isn't that bad, she said.
Medical advancements like the approval of Atripla in 2006 by the Food and Drug Administration, a once-a-day pill for HIV patients, have improved the life span and appearances of infected people.
David Andress, HIV/AIDS program coordinator at the Florida Department of Health for Area 4, which covers Baker, Clay, Duval, Nassau and St. Johns counties, said people can now live on average 33 years after infection, but it's an expensive disease to have.
In Jacksonville, there are about 325 new infections each year, and the medical costs for each patient vary greatly, depending on the extent of care needed. Patient care money comes from the state, Medicare, Medicaid and the Ryan White Part A grant from the federal government.
"For the 5,000 people living in our five counties with HIV/AIDS, they are probably spending $25 [million] to $30 million [a year] on patient care," Andress said.
Hill said people who assume HIV isn't so bad don't see patients on dialysis or suffering from cancer, because the disease compromises the immunity of those infected, making them more susceptible to other conditions and diseases. With many African-Americans staying silent about their status, people don't make the connection of these conditions that arise as a result of HIV and AIDS.
"HIV, while it's becoming a manageable, chronic disease, it's still not easy - it's very inconvenient; you have to go to the doctor a lot, it's not something you want to get," Andress said. "Although people look OK, people really aren't OK."
Risk factors
The National Women's Health Information Center for the U.S. Department of Health and Human Services determined several factors that make black women more susceptible to HIV and AIDS.
A component in its assessment is sexually transmitted infection rates, because many STDs are transmitted through the same behaviors as HIV, and untreated STDs can break the skin, giving the virus easier access to enter the bloodstream.
From 2007 to 2010 in Duval County, there have been nearly 20,000 reported cases of chlamydia, 8,200 cases of gonorrhea and about 800 cases of syphilis, and women in Jacksonville, primarily blacks, are twice as likely to be infected with an STD, Andress said.
Another factor is an unbalanced number of women in Jacksonville. Currently, there are about 11 percent more black women than black men in Jacksonville, according to the Legislature's Office of Economic and Demographic Research, and the black male population is often depleted because a third of black men spend time in prison, which also exposes them to a higher risk of HIV.
"[Prison] is a whole different type of system, type of living, but when they come out, a lot of men no longer identify with that prison lifestyle," said Richardson.
Hill suggested graduation rates as factor in the number of those testing positive, because those not exposed to sexual education are less aware of the risks.
In Jacksonville, the high schools with the highest number of African-American students, Ribault and Raines, had some of the lowest graduation rates in the district for the 2008-09 school year, according to the Florida Department of Education.
Looking ahead to solutions
So what are black women supposed to do if the odds aren't in their favor? Learn more about the disease and its causes - and make sure they and their partners get tested for HIV/AIDS and STDs, even if there are no present symptoms, Glenn said.
"We have to protect ourselves in order to protect our children, so we need to ask these questions when we get into relationships about sexual pasts and testing," she said.
Andress and Hill both said there should be more funding for prevention services to provide education about HIV/AIDS and STDs in high-risk areas and in schools. Although some of that is already being done by the Department of Health and River Region, like many programs, funding is tight and they are unable to reach as many people as they would like.
Andress said if prevention was more of a priority, there wouldn't be as many positive HIV/AIDS tests, which means less money would be spent on patient care.
Hill also said the easiest thing that can be done is to "normalize" the disease - have an open dialogue about HIV/AIDS with partners, friends and in schools, and make sure women get tested with each physical.
An open dialogue about HIV/AIDS in the community could reduce the stigma and fear, she said - the biggest obstacles in the way of abating infection rates.
tracy.jones@jacksonville.com, (904) 359-4272
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