By Elinor Nauen and Bonnie Goldman
"It's like a double sentence, living in a prison within a prison. I was the first woman diagnosed at the facility and I experienced a lot of discrimination and stigma from inmates and staff. The staff and I went through lots of trial and error. I was put in isolation cells, fed off of disposable trays, and not allowed to play certain sports. I went to Wichita Work Release and was told not to use the washer and dryer and was not allowed to work in fast food places.
"They ain't keepin' me here forever," says Carol Jackson, who is a little over five years into a 13-year sentence for possession of crack cocaine in an amount she describes as the size of a piece of line, .04 grams. She has amassed three years of good time, and is a level-three (minimum security) inmate at the Topeka Correctional Center for Women. Both Carol and her case manager feel that she received the stiff sentence because of a variety of factors: she's poor, African American, female, a heroin addict, and a prostitute; has a prior conviction and prior arrests; and is HIV-positive. Both consider it literally to be a form of social control to keep Carol locked up and unable to potentially spread the virus, as if her HIV status is part of her criminal record.
"What hope I had in the system to rehabilitate me diminished. So I prayed a lot, read the Bible, and I have a family and friends who love me and encourage me. After going in and out of drug treatment, mental health, prison, and HIV support groups, I discovered that God would give me the strength and courage to live one day at a time. Through a lot of tears and suffering I was able to look at myself. It took me a long time to discover that I was no longer a victim. I made a choice to live, and to live for the right reasons."
Currently, Carol is on her fourth drug regimen. Over the years she has remained healthy and has never suffered from an opportunistic infection. "Doctors and medicine can help the healing process, but the true healing comes from within me."
This interview was conducted by Jim Pickett, in the book, The Faces of AIDS: Living in the Heartland, part of a campaign to increase awareness of HIV in the U.S. Midwest. For more information or to receive a copy of the book, click here.
After more than 25 years and 25 million deaths, the world has yet to realize that HIV isn't just a man's problem. Although it has escaped the notice of most media -- and even many in the health care and health policy fields -- HIV has quietly become the third most-deadly disease for women in the United States, behind only cancer and heart disease. It's also the leading cause of death for African-American women between the ages of 25 and 34.
Back in 1985, during the earliest years of the epidemic, women and adolescent girls made up only 7 percent of reported AIDS cases in the United States. Twenty years later, women account for 25 percent of all new HIV/AIDS diagnoses in the country.
Why has the number of women with HIV in the United States -- not to mention around the world -- increased so rapidly? Some experts blame complacency: The lack of attention "is a combination of general 'AIDS fatigue' and that people are persuaded we have the medications that will treat it as a chronic disease," says Dr. Judy Auerbach, the vice president of public policy at the American Foundation for AIDS Research.
But in truth, the reasons that women have become such a prominent part of the U.S. HIV epidemic (not to mention the global pandemic) are many and varied.
Women Are Different
Biology, it seems, does affect destiny: When having unprotected heterosexual sex, women are as much as eight times more likely to become infected with HIV as men. However, this risk is exacerbated by societal issues: All too many girls are raised with little or no understanding of how transmission occurs or how to protect themselves from HIV and other sexually transmitted diseases (STDs).
Yet the numbers don't lie: Nearly three quarters of all U.S. women contracted HIV through heterosexual sex, estimates say. In 1993, women represented 14 percent of all people with AIDS in the United States. As of 2005, an estimated 128,000 female adults and adolescents were living with HIV/AIDS. The U.S. Centers for Disease Control and Prevention (CDC) also estimates that less than three women in 10 contracted HIV through injection drug use.
Even if she is aware of the risks of unsafe sex, the power dynamics of a male-female sexual relationship often put even the most educated woman at a disadvantage. As Microsoft Chairman Bill Gates said at the XVI International AIDS Conference in Toronto in 2006, "A woman should never need her partner's permission to save her own life." But, unfortunately, throughout the United States and certainly around the world, women often do need their partner's permission. They depend, for example, on their male partners to put on a condom, or disclose infidelities when protection is not used while in a monogamous relationship.
Speaking at the same conference as Gates, Peter Piot, executive director of UNAIDS and an eloquent women's advocate, said, "What we are seeing is an increasing feminization of the epidemic everywhere. ... the AIDS response in most countries has still not taken full account of the extent to which gender inequality and the low status of women are driving the epidemic." He warned that, if we continue to fail to address women's lack of sexual power, we have no chance of bringing HIV under control.
Piot is one of the few male political leaders who says what is obvious to many women: "Too little has been done on the ground to encourage men and boys to embrace gender-equal norms and behaviors, because let's face it ... this epidemic is driven by male behavior."
Indeed, research supports just how much of an impact male behavior has on the health of women. An astonishing 66% of HIV-positive women in the United States have experienced domestic violence at some point in their life, according to results from the Women's Interagency HIV Study, the largest, ongoing, U.S. study of HIV-positive women. The study found that childhood sexual abuse was also relatively common, with 30% of HIV-positive women acknowledging they had been abused as children.
"Violence against women is not just a cause of the AIDS epidemic. It can also be a consequence of it," said Piot in a speech at the turn of the millennium. "Of those [women] whose infection status became known to others, many suffered direct violence at the hands of their husband, family or community."
Even love and trust put women at risk. Simply being married, for instance, becomes a risk factor when a woman's husband has unprotected sex or shares injection-drug needles with others. Between 40 percent and 80 percent of women get the virus from a male sex partner -- often their only partner.
Clearly, it will take generations to change these issues of gender inequality. So perhaps the most we can do now is to make women aware of their risk and ensure they get the HIV testing and care they need.
The fact is, any woman can be exposed to HIV. Yet many women firmly believe they are not at risk. And who can blame them? With HIV widely ignored by both gynecologists and women's magazines, she can certainly be forgiven for not knowing what she hasn't been told. As a result, many women don't bother to get tested for HIV until long after they've been exposed to the virus.
For example, when a gay man goes to the emergency room with chest pains after an initial exam, one of the first things a doctor may suspect is "HIV-related pneumonia," while a woman who shows up with the same symptoms may immediately be told she has the flu. Most women -- even women with risk factors that should prompt them to get tested -- learn of their HIV status only coincidentally: For instance, a hospital may give her an HIV test because she's pregnant; she may have a routine HIV test done when she changes jobs or insurance plans; she may get tested only because her partner becomes ill; or she may get tested when she goes into a rehabilitation program for drug addiction.
However, getting tested for HIV late is not a good idea. The longer a person lives with HIV without treatment, the more likely it becomes that HIV disease will progress. Unfortunately, getting tested late is particularly common among African Americans, which may help explain why AIDS is the number-one killer of African-American women between the ages of 25 and 34.
Despite these sobering stats, many people -- doctors very much among them -- still wrongly assume that HIV is a disease of gay men, or of people in urban areas such as New York and San Francisco, or of people living in Africa, or of people who sleep around, or of junkies -- in other words, for everyone other than what the "typical" woman is envisioned to be.
"The way in which we have developed HIV prevention, particularly around testing and categorizing who is at risk, has in many ways created the mindset that only certain people are at risk, and the typical woman is left out of the equation," says Carrie Broadus, executive director of Women Alive, a nonprofit organization in Los Angeles created by, and for, women living with HIV/AIDS.
Broadus says that, when a woman talks with a health care professional about her sexual history, she often will not be asked about her own behaviors. Instead, she will be asked if she has had sex with a man who 1) has had sex with another man, 2) injects drugs or 3) has had sex for drugs or money. Not only do these questions only tell half the woman's story, Broadus explains, but they also require a woman to know about her male partner's behavior -- knowledge she may not have. "She may say no to all of [those questions]. So the perception is that she is at low risk."
In fact, according to the CDC, a third of women who test positive for HIV in the United States would answer no to all three of those questions. Broadus' organization, Women Alive, discovered this reality first hand: When it learned that women in Los Angeles were being diagnosed with HIV well into disease progression, it secured funding to improve access to HIV testing for women of color and women with sexual risk.
However, Women Alive found that the concept of "sexual risk" tripped up the very people who were supposed to improve women's access to HIV testing. The testers refused services to many women because they didn't fit into traditional high-risk groups, says Broadus; when Los Angeles County looked at the data relating to women, "They discovered that 40% to 60% of African-American women and Latinas testing positive did not fit in those risk groups. They had only had sex with a man."
These types of findings make it clear that the traditional ways that health care workers have decided who should be offered an HIV test are no longer working. That realization was part of the driving force behind the CDC's headline-grabbing decision in 2006 to officially recommend that everybody in the United States between the ages of 13 and 64 -- men and women, black and white, low risk and high risk -- be given an HIV test as a routine part of their medical care. Many experts have expressed hope that by making HIV tests routine for most of the United States, late diagnoses can become a thing of the past. With earlier diagnoses would come earlier treatment, fewer HIV-related illnesses and deaths, and fewer undiagnosed people unwittingly passing HIV on to others.
It sounds like a prescription for success. However, actually implementing these universal testing recommendations is another matter. In some places -- particularly small, close-knit rural communities -- confidentiality can't be assured, so women may decide not to get tested. (The new CDC recommendations call for "opt-out" testing, which allow people to refuse an HIV test.)
In addition, the stigma that has existed since the beginning of the HIV pandemic hasn't changed; in fact, if anything, it's growing. Especially for women, the fear of being isolated in their communities can be extremely powerful. Many HIV-positive women have children they want to protect from gossip and discrimination at school. When it comes to curbing HIV rates among women, fighting society's misconceptions about HIV may turn out to be just as important as increasing access to HIV tests.