Perhaps no topic is more appropriate for World AIDS Day 2004 than the feminization of AIDS. Tragically, women around the world now have equality in a way that no one ever wanted: by accounting for nearly half of the approximately 38 million HIV/AIDS cases worldwide.1 Of course, in many parts of the world, AIDS has disproportionately affected women from the very beginning of the epidemic. Experts differ as to the best strategies for combating HIV infection and treating HIV disease, but almost all agree that women have reached parity with men in the AIDS pandemic largely because they have not reached it in terms of economic or educational opportunities, and certainly have not attained it within their relationships with men.
Ninety-eight percent of women living with HIV/AIDS live in the developing world2 (see pages 6–7). Whether it occurs in developing countries or the United States, however, HIV/AIDS disproportionately affects women who are economically disadvantaged. In a time when many Americans seem to think that the problem at home has been largely solved, many women in the United States face extraordinary—and, for most Americans, unfathomable—barriers to care. In the words of Houston HIV/AIDS clinician Joseph Gathe, “The area my clinic is in is essentially a suburb of the Third World. It’s a shame no one seems to know that the problem in Africa looks like the problem in inner-city Houston, Chicago, and New York.”3
Risk for poverty is related to the tragedy of HIV/AIDS among minority women in the United States. In 2001 AIDS was the leading cause of death among African American women aged 25 to 34 but the sixth leading cause of death among white women in the same age group.4 In 2002 the rate of AIDS diagnoses was almost 23 times greater for African American women than for white women.5 African American and Latino women constituted 25 percent of the U.S. female population in 2002 but an astounding 81.5 percent of reported female AIDS cases (65 percent were among African Americans and 16.5 percent were among Hispanics).6
Women’s vulnerability to HIV/AIDS must be examined in the context of the social and economic factors that shape our world. Globally, the feminization of AIDS is inextricably linked to poverty and is “at its heart . . . a crisis of gender inequality, with women less able than men to exercise control over their bodies and lives.”2
One in 4 AIDS cases reported among women in the United States is among those age 29 and younger, compared with about 1 in 6 cases among men.7 Women tend to become infected with HIV at younger ages than men do, a pattern reflecting that the risk they face is partly related to the vulnerability intrinsic to being young. Globally, young women (i.e., those aged 15 to 24) are 1.6 times more likely to be living with HIV/AIDS than their male counterparts.2 Although injection drug use is fueling the epidemic in some parts of the industrialized world, heterosexual transmission of HIV is “proportionately on the rise in every continent,” according to Peter Piot, executive director of the United Nations Joint Programme on HIV/AIDS (UNAIDS).8 In the United States, heterosexual contact was the HIV exposure category for 68.2 percent of women diagnosed with AIDS in 2002.9
Discrete biological factors certainly increase the risk of infection among women and girls (see box, p. 4). But gender-based inequalities play a central role in women’s vulnerability to HIV infection and poor access to prevention and care services.10 A confluence of factors makes it difficult for women to reduce their risk of HIV infection and to receive appropriate treatment once diagnosed. Those factors vary from culture to culture, but they can be broadly categorized as informational, societal, and economic.
Worldwide, women tend to know less than men about HIV and its transmission.2 In fact, in many cultures, ignorance about sexuality itself—let alone HIV disease—is considered a defining element of femininity.11 According to recent data compiled by the United Nations, more than 80 percent of young women lack “sufficient knowledge” about HIV disease. Many have “no idea how HIV/AIDS is transmitted and little or no information on protection methods.”2 In the United States, many young women, even in areas of high seroprevalence, believe that they are not at risk for HIV infection.12
Around the world, most women face barriers to health care services. Access to care, however, is no guarantee that women will receive the information they need to prevent HIV or secure appropriate diagnosis and treatment. In the United States, a study by the Kaiser Family Foundation found that only about one-third of the women surveyed had talked to a health care provider about HIV/AIDS, a serious issue for women who may not understand that they are at risk for HIV infection.13
Lack of information is related to the fact that many girls lack access to education. In addition, families may pull girls out of school to help care for sick family members or perform other household duties.14 Formal education is associated with greater access to health care and reduced risk for HIV/AIDS.
Culture shapes the extent to which HIV education is available to women, but information alone is insufficient to reduce the risk of HIV infection among women and girls. Even if women know how to protect themselves from infection, they may have little control over their sexual experiences. Manifestations of this lack of control include rape; inability to negotiate condom use; and, in some cultures, forced marriage.
| Race/Ethnicity | Number | % |
|---|---|---|
| Source: Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 2002;14(Addendum):A4. Table A3. | ||
| White, not Hispanic | 1,931 | 17.1 |
| Black, not Hispanic | 7,353 | 65.2 |
| Hispanic | 1,872 | 16.6 |
| Asian/Pacific Islander | 69 | |
| American Indian/ Alaska Native | 42 | <1 |
| Total* | 11,279 | <1 |
A 1997 study of sexually active young women ages 14 to 26 in the United States revealed that “almost 20 percent perceived that they never have the right to refuse to have sexual intercourse.”15 African American and Hispanic females in general, and young girls in particular, were most likely to believe that they did not have sexual rights.
Refusing sex is simply not an option for many women, particularly for sex workers, victims of sex trafficking, women forced into marriage, and young women who have relationships with much older men. But the problem is not limited to those situations. Research suggests that at least 1 in 5 women worldwide have been physically or sexually abused as either adults or children. An estimated 10 to 15 percent of all females, many of whom are younger than 15, report being forced to have sex.2
Even when the sexual encounter is consensual, negotiating condom use—if, indeed, condoms are available at all—is often difficult or even dangerous. Several studies have found that women commonly cite their partner’s unwillingness as the primary reason for infrequent condom use.16 Moreover, unprotected sex is often considered a sign of intimacy, commitment, and trust between a couple.17 Maintaining intimacy and securing male approval may be especially important to adolescent girls, who also may lack the communication skills to negotiate condom use.18
Violence against women is “both a cause and a consequence of HIV/AIDS” and is a fact of life for too many women in every country.2 The nature and extent of violence vary from culture to culture. In the United States, women who suffer frequent abuse often become trapped in a cycle of “violence, drug abuse and unwanted sex which leaves them at a very high risk of becoming infected with HIV.”11 Women threatened by violence may be afraid to ask their partners to use condoms and may submit to coerced sex for fear that their refusal will spur abuse.19 Similarly, a study of HIV-positive women enrolled in a Johns Hopkins clinic, most of whom reported either physical (68 percent) or sexual abuse (32 percent) as adults, found that nearly one-third of the women reported being afraid of disclosing their HIV status for fear of violence.20
Violence is more than an occasional problem among women living with HIV/AIDS, particularly for women in poor urban communities.21,22 Traumatic life experiences, such as violent victimization, have been found to be associated with high rates of psychiatric problems, substance abuse, and treatment nonadherence.20,22 These problems contribute to the spread of HIV by increasing the likelihood of high-risk behavior.
Some women simply can’t negotiate condom use, and many others think they don’t need to. The sad fact is that millions of HIV-positive women in the world today have always been faithful to their partner. And millions more monogamous women will become HIV infected in the next decade—some because they assume that their husband or partner is also monogamous, others because asking one’s husband to use a condom would be breaking a social taboo or construed as evidence of infidelity. Many women fear violence at even suggesting that protection is in order.
Early sexual debut is associated with increased risk for HIV. Young women may engage in sexual activity because they believe their partner can help them escape the cycle of poverty and hardship in which they may live. They may see the promise of a child as a source of closeness and family ties that are missing from their lives. Whatever the reason for early sexual debut, young women are often unknowingly—and dramatically—increasing their risk of exposure to HIV, and especially when they enter sexual relationships with older men. As the age difference between sexual partners increases, so does the likelihood that intercourse is unprotected, in part because adolescent girls generally lack the communication and negotiation skills necessary to secure the cooperation of their partner.18
In the developing world, marriage between young girls and much older men is of particular concern. “Child brides” are still common in some countries, sometimes sanctioned by law or custom. Families may arrange their daughters’ marriages to older men in exchange for money or other resources—or young women may see such marriages as a way out of poverty.2,11 Just like their counterparts in the industrialized world, young girls in the developing world who enter relationships with older men are at increased risk for HIV infection. A study of married women in Kenya found that half of the women with much older husbands (at least 10 years) were HIV positive, compared with none of the women whose husbands were up to 3 years older.2
Poverty fuels the spread of the AIDS epidemic, and the epidemic in turn fuels poverty.11 In the United States, people living with HIV/AIDS are poorer than the general population, and women with HIV/AIDS are more likely to be poor, to be unemployed, and to have less education than their male counterparts. HIV-positive women are also less likely than men to have private health insurance and are more likely to face barriers to health care services.13 Low-income women are more likely to report negative experiences with the health care system, higher rates of dissatisfaction with providers, lower use of preventive services, and limited access to primary care. Access for low-income women is also complicated by their caregiving responsibilities, and lack of child care and transportation are often barriers to care.13
As AIDS ravages the developing world, more women are becoming heads of household “and sink[ing] deeper into the poverty that disproportionately affects female-headed households.”2 The earning power of their families, in many cases, has already been decimated by the illness of a husband or partner. In countries where women have no legal rights of inheritance, any property left by a deceased husband is often returned to his family. With little education, HIV-positive women are left in a cycle of poverty and subsistence—with no pathway to care and no pathway out of the cycle.
When women living with HIV disease in the United States are diagnosed early and given appropriate treatment, they survive as long as men with HIV/AIDS.11 Yet as a group, women with HIV/AIDS report worse health outcomes and physical functioning because they are less likely than men to receive appropriate care.13 Not only do HIV-positive women still tend to be diagnosed later than infected men, but after diagnosis, 25 percent postpone medical care due to various psychosocial and financial barriers.23 In other words, the factors that increase risk for HIV infection among women do not go away after seroconversion. And other factors, such as discrimination, begin to play a more insidious role. In one study, 71 percent of participants (men and women) reported having experienced race-based discrimination when receiving treatment for HIV. Those reporting discrimination had a greater severity of AIDS-related symptoms, lower perceived general health, and less health care satisfaction.24
Source: Centers for Disease Control and Prevention. HIV/AIDS Surveillance in Women L264 slide series (through 2002). 2004. Slide 1. Available at: http://www.cdc.gov/hiv/graphics/women.htm.
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act’s Title IV program is the cornerstone of the U.S. response to HIV/AIDS among underserved women. All the major CARE Act programs reach women, who constitute approximately 30 percent of all clients at CARE Act-funded sites. But the Title IV program has developed the comprehensive care models that women need and has taught the larger care system how to serve women.
HIV/AIDS affects women in almost every facet of their lives. Given the extremely high rates of poverty and its attendant problems among HIV-positive women in America, engaging underserved women and helping them adjust to their illness requires that providers address a multitude of issues. What is the impact on the HIV-positive woman’s family? How can the family’s housing be stabilized? What mental health and support services are needed so that entry into care is viable and that the life of the family can be safeguarded?
In Charlotte, NC, the Metrolina AIDS Project serves a population of approximately 2,200 clients, 55 percent of whom are women. Almost all clients at Metrolina’s Title IV-funded Caring for Families program—now in its 9th year—are poor and either unemployed or employed in low-paying industries. “Helping these women manage their finances, maintain secure housing, and put food on the table is often an immediate priority,” says Faye Marshall, the Caring for Families Project coordinator. Most of the program’s clients are women in single-parent households.
Metrolina provides the kind of comprehensive approach to meeting the needs of underserved women and their families that has made Title IV a success. Metrolina’s Agape Family Center provides women and their families with referrals and linkages to cultually competent medical and specialty care. But Metrolina’s support services are what ensure utilization of care and help HIV-positive women get back on their feet.
“A considerable number of women we see are multiply diagnosed with mental health and substance abuse problems,” says Marshall. Through support groups, linkages to community providers, and peer counselors, Metrolina helps women build the self-confidence that allows them to take charge of their own lives—sometimes for the first time. “Many of our clients are in unhealthy relationships that often involve domestic violence,” Marshall adds. Consequently, the program offers training programs designed to empower women to better advocate for themselves and their families.
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United Nations Joint Programme on HIV/AIDS (UNAIDS), United Nations Population Fund (UNFPA), United Nations Development Fund for Women (UNIFEM). Women and AIDS: Confronting the Crisis. New York and Geneva: Authors; 2004. Available at: www.unfpa.org/hiv/women/docs/ women_aids.pdf. pp.vi-vii.
The support of HIV-infected peers is often an essential component of comprehensive care for women living with HIV/AIDS because HIV-infected women serve as “models of survival” for one another.26 “When you disclose your status, it’s like magic,” says Deborah Howze, a Metrolina employee who is living with HIV. “When young women find out that they are HIV positive and begin to learn about what treatment entails, they are often overcome. They may feel powerless. And they may feel hopeless. But when I sit down with them and say, ‘I am HIV infected but I have been blessed because I have learned how to deal with HIV and not let it control me,’ a glimmer of hope comes to their eyes.”
Source: Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 2002;14,12. Table 3.
Women must receive support immediately following diagnosis so that they can “find acceptance” with themselves and their illness. Metrolina uses a modified version of case management in which clients are paired with a service coordinator, or “professional friend,” who can establish a more personal relationship with a client than is often provided through traditional case management. “The most pressing need for most women,” says Marshall, “is the reassurance that they are not alone—that support is available.” For more information on the services of Metrolina AIDS Project, visit www.metrolinaaidsproject.org.
The Metrolina project exemplifies the menu of services required to effectively serve HIV-positive women and their families. In addition to providing linkages to the medical care necessary for ensuring good health, agencies must address needs that can be placed in four broadly defined categories, as outlined below.
Psychological and sociocultural needs, including substance abuse and mental health problems. Women living with HIV have a high incidence of mental health problems and report greater levels of psychological distress than their male counterparts.26 Psychosocial distress not only impedes the quality of one’s social and emotional life but also is associated with poorer physical functioning: AIDS-related death, for example, is more common among HIV-positive women who report chronic depressive symptoms.27
A growing number of women are dually diagnosed with HIV infection and substance use problems.28 Effective diagnosis and treatment are critical to help women cope with HIV disease and adhere to their medications. Incorporating gender-specific and culturally specific interventions into HIV/AIDS care can effectively reduce the frequency of drug use.29 Many of Metrolina’s clients have substance abuse problems that can impede their ability to cope with the emotional and physical effects of HIV disease.
Financial stressors, including lack of health insurance, loss of employment, and competing subsistence needs. In the United States, most women with HIV disease are poor and were living in poverty even prior to learning of their HIV status.30,31 For example, a 1998 study of four urban areas in the Northeast indicated that 72 percent of HIV-positive women had incomes of less than $1,000 per month,32 and a 1997 study in Maryland showed that 75 percent of the HIV-positive women who received Medicaid in that State did so before they were diagnosed with HIV.33 HIV infection can wreak havoc on tenuous family finances, which often depend on the caregiving and wage-earning contributions of women. By compromising a woman’s ability to generate income and complete household and caregiving tasks, AIDS diminishes economic resources, reduces food security, and further disempowers women.34 Most successful HIV/AIDS service providers help women take financial control over their lives by providing linkages to job training and education programs.
Transportation, child care, and similar basic living issues. Lack of transportation is a major barrier to care. Aside from the expense, which is often considerable for women in poverty, accessing available transportation services is often extremely time consuming. A trip across a major American city can require numerous bus transfers and hours of lost time—and a trip to the other side of a smaller community may not be possible because of poor public transportation options. How does an hourly wage earner living on the brink cope with the loss of wages she will incur just to see the doctor? How does she explain her absence to an employer who, she fears, will fire her if she discloses her status?
Lack of child care presents a major barrier as well: Who watches a woman’s children while she is seeing her doctor or attending the support group that will give her the psychological strength to fight her disease? According to the Kaiser Family Foundation, women in the HIV care system are more likely than men to have children under age 18 (76 percent of women compared with 34 percent of men). Of those parents, women are more than twice as likely to be living with their children.13 Other research suggests that HIV-infected people with a child in the household are nearly twice as likely to delay seeking care as those without children.35 Successful care providers adopt a family-centered approach that recognizes the importance of family bonds.19 Women often define themselves in terms of their caregiving relationships and may delay seeking needed medical treatment if they feel that doing so may compromise their ability to meet their caregiving responsibilities.19
Stigma and discrimination. People living with HIV/AIDS face considerable stigma, which can be especially severe among low-income African American women.36,37 Women who experience stigma are less likely than those in supportive environments to undergo HIV testing, to disclose their HIV status, and to seek out necessary medical care. Moreover, stigma or discrimination may hinder retention in care and adherence.2,26
It is far beyond the reach of local service providers to mitigate all the effects of stigma in the world today. But providers can offer a safe place for women to explore their lives and address their needs. And they must help clients develop strategies for countering the stigma, discrimination, and violence they encounter at home and in their daily lives.
Source: Kaiser Family Foundation/KLA South African National Youth Survey. 2000. Cited in: Joint United Nations Programme on HIV/AIDS, World Health Organization. HIV/AIDS in Sub-Saharan Africa. 2002. Available at: www.unaids.org/html/pub/Topics/ Epidemiology/Slides06/47.
Women living in the developing countries hardest hit by the AIDS epidemic face barriers to treatment that Americans may find hard to fathom. Of the 1 million people receiving AIDS treatment worldwide, nearly all live in wealthy countries; in sub-Saharan Africa, only about 3 percent of the people in need of antiretroviral treatment received it in 2003.2
Karen Ivantic-Doucette directs the Marquette University College of Nursing’s collaboration with the U.S. Agency for International Development (USAID), “Training a Sustainable Workforce for HIV and AIDS Care and Counseling in Africa.” She describes a situation in Kenya that repeats itself in community after community:
Ten years ago, the two largest slums in Nairobi were transitional. Most residents were temporary transplants from rural areas who came to Nairobi in search of jobs. Once they found them, they moved into more stable environments. Now—because of AIDS—the slums have become a permanent community for thousands of people living with HIV disease. Most have almost no income and nowhere to turn. And because of stigma and poor health, they can’t go back home.
Although Kenya reports an HIV prevalence rate of less than 10 percent, in some areas, such as the Nairobi slums that Ivantic-Doucette describes, the HIV prevalence rates are between 15 and 30 percent. Some experts believe the rates could be as high as 50 to 60 percent in these areas. Tuberculosis prevalence is estimated at 76 percent. For the many women living there, the only way to earn money is through sex work. Especially vulnerable are the girls—sometimes as young as 11 years old—who enter into sexual relationships with older men in exchange for food or money.
Experience in the United States and abroad teaches that programs must reflect the unique contexts and cultural forces that shape women’s lives and identify each client’s most pressing needs and barriers to care. The program in Kenya that Ivantic-Doucette describes does just that. The Marquette–USAID program partners with three clinics across Kenya to train nurses and community health workers in HIV/AIDS care and to improve clinical outcomes through nutrition and clean water. In the slums of Nairobi, the program serves more than 20,000 people, most of whom are women and are already mothers, pregnant, or both. They have an average of five children at home. This caregiving burden also extends to health care providers: The lion’s share of HIV care in Kenya is provided by nurses—most of whom are women juggling with their own caregiving responsibilities. Some 10 to 15 percent of Kenya’s nurses are HIV positive.
Nurses and community health workers are the backbone of the Marquette– USAID program. They provide primary care services and case management and are responsible for administering HIV medications. Volunteer health workers—who themselves live within the target community—are trained to provide outreach and referrals. These community health workers serve as a vital bridge between the community and the clinic. They work with the clinic nurses to build a therapeutic relationship with clients and their families. Most important, however, they provide hope to clients. According to Ivantic-Doucette, these providers are effective in part because they recognize and respect the underlying cultural and spiritual values that shape their clients’ decisions and relationships.
In addition to training nurses and community health workers, the Marquette– USAID program provides medical, psychosocial, and spiritual services to at-risk and HIV-infected people in the region. AIDS treatment is provided alongside nutritional support and food relief because most clients desperately need clean food and water. The program uses a “food-by-prescription” system, which has a strong clinical monitoring component. “We put some science behind the traditional concept of food relief,” Ivantic-Doucette says. Through the initiative, each client receives a daily food ration containing predetermined levels of key nutrients. After 3 months of rations, the clients undergo clinical and nutritional assessments. Because women are prone to giving their rations to their children or other family members, the program takes steps to ensure that all family members are provided with their own rations. The Marquette-USAID program also helps clients achieve long-term nutritional security through a communal garden project and macroenterprise projects.
The program helps women access HIV treatment so they can regain the energy to support themselves and their families. Improving women’s retention in care and adherence to treatment requires aggressive case management and positive client–provider relationships. According to Ivantic-Doucette, one of the unique strategies of the Marquette–USAID program is the rule that HIV-positive clients on HAART must have a “treatment partner”: a friend, family member, or other member of the community who will monitor and support the client’s treatment. This system has proven successful in improving adherence as well as in helping women build or solidify supportive relationships and overcome fears of stigma and alienation.
Notwithstanding the vast disparities in available resources, the similarities between Ivantic-Doucette’s program and those funded through the CARE Act Title IV program in the United States are remarkable.
The forecasts are grim. UNAIDS and World Health Organization researchers estimate that 45 million HIV infections will occur between 2003 and 2010. By that time, AIDS will have left 18 million orphans in its wake in Sub-Saharan Africa alone.1 Schools will be devoid of teachers, businesses will lack workers, and clinics will have few nurses. The women who die from AIDS are leaving a gaping hole in the heart of the world. Their suffering and pain is everyone’s, and it must drive all providers to motivate others to step up to help fight the battle against AIDS.
The worldwide HIV/AIDS services community is not without its tools. Providers know what works. By increasing investment in the developing world, that knowledge can be used to give health and hope to growing numbers of women and families affected by HIV/AIDS. Wherever underserved HIV-positive women live—whether in southeast Asia, a Nairobi slum, or Charlotte, NC—care must begin by showing women that they are not alone. And it must be client centered, culturally competent, and focused on the needs of the whole person.
A variety of individual and cultural factors place African American women at high risk for contracting HIV:
In addition, factors such as poverty, poor access to care, trauma, and violence, which disproportionately affect the African American community, have been correlated with increased risk-taking behavior among women.
Source: McNair LD, Prather CM. African American women and AIDS: factors influencing risk and reaction to HIV disease. J Black Psychol. 2004;30:106-23.
Women face specific risks for transmission that, compared with men, place them at greater risk for acquiring HIV infection from a single exposure to HIV-infected blood or semen.
These unique characteristics have spurred a search for chemical, biological, and physical barriers that can be used intra-vaginally or intrarectally to inactivate HIV and other microorganisms.
Sources: National Institute on Allergy and Infectious Diseases. HIV infection
in women. Fact sheet. 2004. Available at: www.niaid.nih.gov/ factsheets/womenhiv.htm.
Global Campaign for Microbicides. Women and HIV risk. Fact sheet. 2002. Available
at: www.global-campaign.org/womenHIV.htm.
EngenderHealth. Women’s vulnerability and risk. Module 3 in HIV and AIDS:
Online Minicourse. 2004. Available at: www.engenderhealth.org/ res/onc/hiv/transmission/hiv3p6.html.
Young women now account for more than 60 percent of 15- to 24-year-olds living with HIV/AIDS. The July 2004 issue of HRSA CareAction was devoted to the impact of the HIV/AIDS epidemic on adolescent girls and young women in the United States. Copies are available at www.hab.hrsa.gov/publications/july2004/.
A variety of factors place girls at high risk for HIV infection, including the following:
Source: United Nations Joint Programme on HIV/AIDS (UNAIDS), United Nations Population Fund (UNFPA), United Nations Development Fund for Women (UNIFEM). Women and AIDS: Confronting the Crisis. New York and Geneva: Authors; 2004. Available at: www.unfpa.org/ hiv/women/docs/women_aids.pdf.