July / August 2011
by Regan Hofmann and Willette Francis
Of the 50 states, New Jersey has the highest proportion-one out of three-
of people living with HIV/AIDS who are women. And while women of color
comprise only one third of New Jersey's adult female population, they
constitute more than 83 percent of the state's women with HIV/AIDS. Through their stories, three African-American New Jersey women shed light on the drivers of this crisis-and suggest some ways to solve it.
to read a digital edition of this article.
One reason HIV has become the No. 1 killer of women ages 15 to 44 worldwide is that too many people (including too many women) still think HIV/AIDS is a man’s disease. It’s not. It never has been. Women have contracted HIV since the dawn of the epidemic. At first, they were less visible than their male, especially gay male, peers. But as the global percentages of men and women
living with HIV reached a dead heat, it became glaringly apparent that HIV has no gender target.
In New Jersey, one of every three people living with the virus is a woman or girl. In the United States, New Jersey has the highest percentage of women among the total HIV-positive population. Four out of five women living with HIV/AIDS in the Garden State are women of color. Which is to say that many of the women with HIV in New Jersey are deeply disenfranchised. Until, it seems, they get HIV.
Tell a woman she’s got a potentially life-threatening illness and watch what she does. Although women may occupy compromised positions that put them at high risk for contracting HIV, women faced with HIV often find the power to confront the situations that let the virus into their lives.
So just what makes women so susceptible to HIV? In part, biology. Receptive sexual partners have a much higher chance of contracting the virus than insertive partners. Heterosexual contact is an increasingly common exposure category for women—in New Jersey, heterosexual sex as transmission route has risen to 56 percent of all female HIV cases.
One risk factor, says Monique Howard, executive director of the 23-year-old New Jersey Women and AIDS Network (NJWAN), is “not being in control of your relationship dynamic and sexual decision-making.” Dottie Rains, an NJWAN member, describes this disempowerment: “I didn’t know how to negotiate safer sex—to apply what I had learned [in sex ed] to a real life situation.”
Safer-sex decisions are not always clear-cut. Many women assume they are safe because they are married or in a monogamous relationship. Not only might they still be at risk, but their risk might even be heightened because, feeling protected by monogamy, they forego condoms. Emotionally or physically abusive relationships render women still less able to convince a partner to practice safer sex. Women, in short, whether single or in a relationship, face a host of challenges when it comes to advocating for what they want or ensuring that their choices around safer sex are respected and honored.
Then there are race and class. Women of color in particular face severe disempowerment. When your day has to focus on securing housing, clothing, food, electricity and transportation, protecting your sexual health often falls low on the list of priorities. “Pregnancy prevention makes it on the list before [protection from HIV],” Howard says. And women sometimes have few other choices than to put themselves at sexual risk in order to get food, clothing or shelter for themselves or their children. So they engage in ”survival sex,” whether limited to one-time and emergency-only incidents, or a more regular necessity.
Not surprisingly, women having survival sex often find their way to drugs and alcohol as a means to numb themselves to the experience. Which is why addiction often befalls people living in challenging situations from which they find no other escape. And with drug use and addiction come greater risks for HIV/AIDS and, of course, depression, which can lower a woman’s self-esteem, robbing her of all she needs to operate from a place of strength and safety.
Another troubling reality: Many women get diagnosed with HIV late in disease progression—some still learn at the same time that they are living with HIV and have AIDS. This reflects both the tendency of women to take care of others first, neglecting their own health and the misconception that women don’t get HIV (women aren’t thinking about it; many doctors don’t consider their female patients at risk for HIV—some even resist giving an HIV test when a woman asks) . Even when women do seek health care, Howard says, “racial disparities persist. Blacks are less likely than whites to have insurance, for example, and often use hospital ERs for their primary care.”
Once they discover they have HIV, women—especially women of color—face unique challenges. Many live in low-income areas with few resources and limited access to health care, transportation and child care. Many are single moms. The
racial discrimination of mass incarceration not only fractures families but also disrupts and disenfranchises entire communities.
So, can we flip the script—and how?
“I think it’s doable,” Howard says. “Prevention programs work if given enough money and time. It takes you three or four months just to get [a program] up and running. [Funds for prevention programs] have to be multi-year.”
“The other key,” Howard says, “is to be a little more innovative with titles and labels. Nobody is going to define themselves as ‘high-risk.’ [If you label a program ‘for high-risk women,’] I’m not going, and I don’t know too many people that are. But if, instead, you talk about how we make sex sexy and safer, and tell women, ‘These things will help you be there to raise your children,’ it will work. It’s OK to tell the funder that this is for high-risk women, but that doesn’t go on the flier for recruitment. And organizations have to move into the 21st century and start using the social media to reduce risk and get out prevention messages.”
And, of course, we need to support and teach one another. If there’s one thing women know how to do, it’s talk to each other. So, read the stories of these three inspiring women, and then tell some friends. Tell your mom, your sister, your aunt, your niece, your neighbor, your gal pal—anyone of the female persuasion—and encourage them to find out their HIV status. Point them to poz.com to learn about HIV—and how to prevent it.
Federal prevention dollars are dwindling, but that’s no excuse for women not getting the information they need. Let’s ask our friends in the Girl Scouts, at breast and ovarian cancer foundations, at Planned Parenthood, at any woman-focused organization to help spread the word. Go to websites for women and post comments. We can’t let our sisters down.
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