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Thandi Dlamini (not her real name) grew up in a crowded four-room house in Umbumbulu with 13 family members. As the youngest girl, she was charged with cooking, cleaning, and caring for her elders. At 19 years of age, she met her first boyfriend. From the perspective of Thandi and other women in her community, he was quite a catch — he was older, unmarried, and financially stable. She dreamed that one day he would offer to pay her lobola (bride price) and she would have her own home. Several months after meeting, he and Thandi had sexual intercourse. Thandi says this was her first sexual encounter.
Nine months later, she gave birth to a daughter, Zama. The baby had many episodes of bloody diarrhea and uncontrollable vomiting. By six months of age, Zama was clearly failing to thrive, and Thandi consented to have her tested for HIV. When the young mother returned to the hospital for the results, she was given three tragic pieces of information: she had given her daughter HIV, no treatment was available, and Zama would not live long.
Ichilo. Disgrace. Amahloni. Shame. This is how Thandi describes her feelings after leaving the hospital. She didn't really know what HIV was, except that it caused people to speak in hushed tones. It took months for Thandi to tell her boyfriend. Soon after hearing the news, he disappeared. Shortly after that, Zama died.
Around the same time, 9000 miles away in Denver, a 32-year-old black woman was sharing Thandi's fate. In 1991, Donna Williams (not her real name) went to her doctor because of fatigue and consented to an HIV test. Weeks later, two women from the Denver Public Health Department arrived at her apartment. They informed her that she was HIV-positive and that her only option was to go to a specialty clinic at the public hospital. When she overcame her initial shock and went to the clinic, she was confronted by a sea of faces unlike her own — almost all men, many appearing near death. Terrified, she fled. A year passed before she obtained care for HIV.
Like Thandi, Donna grew up in a crowded home where she was the primary caregiver at a young age. Her mother had a series of abusive boyfriends, and in an effort to escape, Donna married an older man when she was 17 years old. During their first year of marriage, he was a good provider. Then his addiction to heroin surfaced and quickly destroyed their lives. For the next five years, he was in and out of prison, leaving his wife with their four children, unstably employed and transiently housed. After finally leaving her husband in 1987, Donna discovered that he was dying of AIDS. At the time, she was not sick and was struggling to survive as a single mother, so she did not get tested for HIV until 1991.
The differences between these two women are relatively few: native language, ethnic background, and land of birth. The list of similarities is substantially longer. Both are mothers and caregivers and both are poverty-stricken, transiently employed, and struggling to obtain basic daily requirements such as adequate housing. Both have had limited access to health care. Both have been dependent on men at some point in their lives for financial security. And all these similarities have contributed to their deadliest bond: HIV infection.
The legion of women with HIV infection now numbers in the millions (see graph). According to the World Health Organization, 19.2 million women were living with HIV or AIDS by the end of 2003.1 An alarming increase in the number of women infected has been noted on almost every continent. The region that has been hit the hardest is sub-Saharan Africa, where 57 percent of infected persons are women. In the United States, HIV infection has begun to spread disproportionately among women of certain racial and ethnic groups. About 80 percent of all women living with HIV or AIDS in this country are members of minority groups — 66 percent are black, and 14 percent are Hispanic.2 Globally, most women have acquired HIV through heterosexual intercourse.
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However, the spread of HIV among women has sociopolitical as well as biologic roots: it arises from the inequity between the sexes, societies' class structures, and the inaccessibility of health care. In many societies, educational and employment opportunities for women are limited. Throughout the world, women are placed in subservient positions and lack the freedom to ask questions or to demand the use of condoms. In most societies, if a woman chooses to remain single, she is choosing a life limited by poverty and instability.
(Figure)
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Both these women's stories demonstrate that HIV is one small piece of a larger puzzle. As these pieces multiply and shift, health care needs are often low on the priority list. Donna is thankful that none of her children have HIV, but she has had to help each one through tumultuous circumstances. Currently, she is supporting her daughter through recovery from drug addiction. At 46, she has custody of her 5-year-old granddaughter. She is unemployed and recently had to move back to a subsidized housing project because of her limited income. Through all these difficulties, her adherence to her regimen of highly active antiretroviral therapy has been sporadic. Consequently, she has been hospitalized four times for pneumonia in the past two years.
After Zama's death, Thandi gave birth to a second daughter — who is also HIV-positive. Luckily, through the support of a benefactor, this child has access to the same medications that would be used to treat her in the United States. Thandi's life revolves around ensuring that her daughter takes her medications and stays well. Her greatest concern is that she and her daughter will never have financial security. She is training to become an HIV counselor because she would like to help other women obtain and benefit from HIV treatment, but she has no income and is therefore still dependent on a boyfriend for support.
The lives of these and many other women with HIV infection are mired in adverse circumstances. HIV adds to the overwhelming burden that they must bear. Here in the United States, there are disparities between the sexes in the care received for HIV infection4 — partly because of the complexity of these women's lives, but also because they are frequently uninsured or underinsured and because they are often forced to seek care in systems that are not structured to meet their needs. For example, many HIV clinics have inflexible and inconvenient hours, long waiting times, and few staff members from the same racial or ethnic groups as the patients.
As antiretroviral medications become more widely available in the developing world, a major challenge will be finding ways not simply to dole out medications but also to simultaneously address the broader context. In both Thandi's world and Donna's, cultural, economic, and social structures must be changed to allow women more viable life options. Throughout the world, physicians can assist in this process by advocating a multidisciplinary approach to treatment and prevention that would address women's life circumstances along with their medical needs. Only when such change has been effected will HIV-infected women be able to obtain and benefit optimally from appropriate treatment, and only then will uninfected women be able to protect themselves from HIV infection and secure their own well-being.
Source Information
Dr. Ojikutu is a fellow in infectious diseases at the Massachusetts General Hospital and Brigham and Women's Hospital, Boston; and Dr. Stone is an associate professor in the Division of AIDS, Harvard Medical School, and the Department of Medicine, Massachusetts General Hospital, Boston.
References
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