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Overview

By Elinor Nauen and Bonnie Goldman

Carol Jackson
CAROL JACKSON

"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.

Testing, Testing

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.

HIV Treatment Differences?

Because women have traditionally been excluded from or underrepresented in HIV medication studies, it is still not well understood how women may differ from men in their response to HIV treatment. This underrepresentation trend only recently began to reverse, and the findings have been mixed. For instance, ongoing, large-scale studies -- such as the Women's Interagency HIV Study, the largest study looking at HIV-positive women in the United States -- have found little difference in terms of the effectiveness of HIV treatment. Women with HIV who begin treatment as recommended have been found to do as well as men with HIV.

However, although HIV treatment seems to work as well in women with HIV, the side effects of HIV infection and HIV treatment may differ. Researchers say that women are more likely than men to experience liver problems and skin rashes from HIV medications. In fact, women with a CD4 count above 250 are warned against starting a regimen with Viramune (nevirapine) because of the risk of dangerous liver problems.

Some studies have also found that women with HIV experience more body shape changes, such as thinning legs and fat gain in their breasts and waists, than do men. Meanwhile, results from the Women's Interagency HIV Study show that HIV-positive women are more likely than HIV-negative women to experience menstrual irregularities, genital warts and ulcers, human papillomavirus, vaginal infections and pelvic inflammatory disease -- and that HIV-positive women also tend to get more severe cases of these diseases.

In addition to differences in health complications, there are signs that HIV itself may impact women in at least a slightly different way than men. For instance, researchers have found that once a woman has been infected, she has noticeably lower amounts of HIV in her blood at the beginning, yet loses immune cells and develops AIDS as fast as a man.

Unfortunately, the implications of this difference -- not to mention a number of other factors, such as the role of female hormones and the menstrual cycle -- is not easy to pinpoint. A great deal of research remains before scientists can fully understand the ways in which women and men differ when it comes to HIV and HIV medications.

Minority Women and HIV/AIDS

In the United States, African Americans now account for 68% of all new HIV diagnoses among women. About four out of every five women and girls living with AIDS are African American or Hispanic, although these two groups make up fewer than 25% of females in the United States.

Currently, AIDS is the single most-common killer of African-American women ages 25 to 34, the third most-common cause of death for African-American women between 35 and 44, and the fourth-leading cause of death for African-American women ages 45 to 54, as well as Hispanic women ages 35 to 44.

Why is there such a huge racial disparity? Two basic reasons: poverty and culture. Let's take Hispanic women in California, a state with a huge Hispanic population: Hispanics in the United States were nearly three times more likely to be uninsured as non-Hispanic whites, and many are undocumented immigrants who are afraid to use public services. Poverty in this country, like anywhere, means lack of access to the latest HIV medications and other cutting-edge treatments.

Adaora A. Adimora, M.D., M.P.H., who recently led a study looking at heterosexually transmitted HIV among African Americans in the southeastern United States, noted that "poverty may be an underlying determinant of these [risk] behaviors and a contributor to infection risk even in people who do not have high-risk behaviors."

Click on image for larger view.
Race/Ethnicity of Women With HIV/AIDS Diagnosed During 2001-2004
The cultural effect also appears to be a potent one. "In 2007, we have a system that has in many ways created a stigma -- testing is for undesirables, people who have 'deviant' behavior," says Women Alive's Carrie Broadus. "Where was the message that this disease could be passed heterosexually?" she says. "We've had that message for homosexuals, IV [intravenous] drug users, hemophiliacs. But we did not create a system for women of color. Men who have sex with men is a subset of men who have sex with women -- but women aren't part of the equation, just men with men."

By failing to spread the cultural message that every woman of color may be at risk for HIV, prevention, testing and treatment simply never became a priority.

In addition, some African-American women distrust the medical establishment -- a distrust that many tie to the infamous Tuskegee syphilis experiments in the mid-20th century, but that could also be due to a large number of other factors. Regardless of the reason, the result is the same: Many African Americans may shy away from available HIV testing and treatment services.

Culture can play an important role in another way: Some deeply religious women may believe that whatever happens to them is God's will and there's nothing they can or should do about it.

The potential impact of migrant workers on North America's HIV epidemic is also frequently overlooked. Shelley Davis, deputy director of the Farmworker Justice Fund, Inc., works with female farmworkers in the United States -- the majority of whom are of Mexican descent -- to provide HIV prevention education.

"In traditional Mexican society, women didn't discuss sex with anyone, including their partner/spouse. They stay home on a pedestal, period," she says. "Men, on the other hand, are encouraged to have multiple sexual partners. When men migrate for six months at a time, they are likely to have sex with prostitutes, other men or other women. There is also a reluctance to use condoms with casual or regular partners. Thus, when the men come home, they may have a sexually transmitted disease, but they don't discuss it with their female partner or use a condom. So women get infected with HIV/AIDS in the U.S. and in Mexico."

HIV-Positive Mothers

Alice Rodriguez
ALICE RODRIGUEZ

"Who was I before I tested positive?" Alice Rodriguez mulls the question over. "I was a heroin addict. It wasn't much of a life." Alice was also a wife and mother, among other things, but she says that her drug habit of 25 years dominated her identity.

It's hard to relate the heroin addict to Alice now. She works as a patient advocate at the CORE Center, an HIV/AIDS facility run by Cook County Hospital and Rush Presbyterian - St. Luke's in Chicago, and she spends as much time as possible with her 3-year-old granddaughter.

Alice gave up heroin in the early 1990s, a few years after finding out that she had HIV. Since going into recovery from heroin addiction, she has enjoyed a growing sense of emotional well-being -- even while her health has steadily deteriorated. Alice is reluctant to discuss what she is experiencing physically, both with me and with the people around her because she is determined to avoid self-pity. But over the course of a long discussion, what slowly emerges is that this warm, exuberant woman is all too quickly approaching the end of her life.

"I had low platelets at one point, and so they had to remove my spleen. First, I had a bone marrow procedure. If a doctor ever recommends something like that again, I won't do it. They don't put you to sleep. They went in through my back, and rammed this tube in, and then they started scraping. I could hear it. The pain was horrible. I screamed my bloody lungs out. I ripped up the pillow."

There's no avoiding the question; as gently as possible, I ask Alice how she feels about "declining." The directness of her response suggests that the euphemism I chose wasn't necessary.

"It's like a realization that's coming to a head. It's not that I was in any kind of denial before. ... But the reality is that there is no cure, and eventually you will succumb. That's what I've come to. It's starting to happen. It's okay."

This interview was conducted by Kelly Safreed Harmon, for 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.

One thing many of us forget is that most women living with HIV are mothers. This caretaking role can make it difficult for an HIV-positive mom to balance a strict medication schedule with the typically busy childcare schedule.

In addition, the virus that causes AIDS can be transmitted from an infected mother to her child during two key times: during delivery, when the newborn is exposed to the mother's blood; and after delivery, when the baby is breastfeeding. Without any treatment, about one out of every five babies born to HIV-positive mothers also end up with HIV. But thanks to short-term HIV medication intervention, Cesarean sections and the use of formula instead of breastfeeding, that risk has been cut to 1 to 2 percent in the United States.

In addition, research shows that being pregnant doesn't make a HIV-positive woman sicker, plus a woman can take the majority of available HIV medications without any negative effect on her baby. All this has led to a sort of baby boom among women with HIV/AIDS.

In fact, not too long ago, two doctors wrote in The New England Journal of Medicine that HIV-infected women have a right to infertility treatment; this has led some fertility clinics to begin allowing HIV-positive women to use their services. HIV stigma may still be strong in the United States, but as our understanding of HIV and pregnancy grows, so has society's affirmation of an HIV-positive woman's right to have a baby.

Older Women and HIV/AIDS

Age is no vaccine against HIV. According to the CDC, some 120,000 men and women 50 years of age and older had developed AIDS as of 1999, with approximately 15,000 over the age of 65.

The number of women over 50 with HIV/AIDS is on the rise in the United States. That may be because post-menopausal women, no longer worried about getting pregnant, may be less likely to ask men to use a condom -- in fact, they are one-sixth as likely as their children and grandchildren to use one, according to a survey by University of California-San Francisco researchers.

Click on image for larger view.
Sex of Adults and Adolescents With HIV/AIDS Diagnosed During 2004
Widowed, divorced or separated women who are back in the dating whirl may be at risk because they simply never paid attention to how HIV is spread, and because, back in their dating days, STDs were not so much of a concern. They also may mistake HIV symptoms for normal aging problems and not get tested, often until their illness is quite advanced.

Older women with HIV face unique challenges. Many already have chronic illnesses such as diabetes, high blood pressure, heart disease, high cholesterol and obesity. Interactions between medications for these conditions and HIV medications can be problematic. In addition, older women are in general poorer, and less likely to join support groups or have support systems than younger women and, unlike younger patients, they often can't turn to parents or grandparents for help.

Lesbians and HIV

Because of the way records are kept, it's difficult to pin down figures on female-to-female HIV transmission. For instance, if an HIV-positive woman reports having sex with many women but just once with a man, for statistical purposes, she is considered heterosexual.

The CDC has documented a handful of cases of female-to-female HIV transmission. HIV transmission between women is possible because HIV is present in vaginal fluids and menstrual blood. That said, the risk of HIV transmission during sexual contact between women is substantially lower than when two men have unprotected sex, or when a man and a woman have unprotected sex. Studies have been launched to examine female-to-female transmission further.

What Lies Ahead?

As we improve our understanding of the complex factors that continue to propel the HIV pandemic, it's become almost universally accepted that we, as a global society, must work to fundamentally change the societal and cultural norms that put women at risk for HIV.

Holding out for scientists to develop a cure does nothing to save the lives of women who become HIV positive today. For that reason, many advocacy groups, including UNAIDS, have made recommendations on how everyone from political leaders to the girl (or guy) next door can slow the spread of HIV among women. These recommendations include:

"The slow, piecemeal reform we have seen in the past is not sufficient if women's rights and needs are to be taken seriously," says UNAIDS' Piot. "Equity in all fields -- health, education, environment, the economy -- are essential if women are to act to protect themselves when it comes to HIV and AIDS." This applies to women everywhere. Women who are empowered are women who can protect themselves -- whether in Africa, Asia, Europe, the United States or anywhere in the world.

However, it is a tall order to ask disempowered women to change society on their own; it is incumbent on the rest of the world to do its part to help. Stephen Lewis, who for many years was the United Nations Special Envoy for HIV/AIDS in Africa, has been a staunch advocate of the establishment of an international agency that specifically advocates for the 52 percent of the world's population that is female. Such an organization would be a major step forward in fighting the "untrammeled oppression of women in so many countries on the planet," Lewis said. We hope he gets his wish.

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