Enhancing the Care of People

An AIDS care poster; DRCLAS student travel grant recipient Eliza- beth Walker with Brazilian community health team.

Known for its rich, multi-layered culture and the warmth of its people, Brazil is a favorite destination of Sofia Gruskin, assistant professor of Health and Human Rights at the Harvard School of Public Health. But Gruskin also knows another side to this vibrant and high-spirited country, reflecting the nature of her work there for the past two years. Brazil is one of many countries worldwide caught in the grip of an escalating AIDS epidemic that threatens the lives and livelihoods of millions of its residents and, indeed, the future of generations to come. Gruskin is one of four Harvard investigators for the Enhancing Care Initiative, located at the Harvard AIDS Institute, and operated in partnership with the Franí§ois-Xavier Bagnoud (FXB) Center for Health and Human Rights at the School of Public Health. Along with principal investigator for the Enhancing Care Initiative and executive director of the Harvard AIDS Institute, Richard Marlink, M.D., Gruskin and her colleagues serve as advisors to multidisciplinary AIDS Care Teams of experts in Brazil, as well as Senegal, South Africa, and Thailand, who work to improve the care of men, women, and children living with HIV or AIDS in resource-scarce areas. These teams bring together local experts   clinicians, people living with HIV, epidemiologists, health care delivery experts, human rights specialists, behavioral scientists, economists, and political scientists   to initiate meaningful changes in HIV and AIDS policy and health care delivery in their regions.

A human rights lawyer, Gruskin emphasizes the policy and practice implications of linking health to human rights, with particular attention to women, children, and vulnerable populations in the context of HIV/AIDS. At the Enhancing Care Initiative, she is responsible for ensuring that human rights and gender concerns are incorporated into planning and providing care for people living with HIV/AIDS.

Since the Enhancing Care Initiative was established two years ago, Gruskin has worked closely with Jos é Ricardo Ayres, M.D., and his colleagues on the Brazilian AIDS Care Team. Based in Sí£o Paulo, Santos, and Sí£o Jos é do Rio Preto, the team discovered that in these areas, HIV infections are growing faster among women than among men, the mother-to-child transmission rate is still as high as 20 percent, and women with HIV have a 30 percent greater mortality rate than men. To try to understand these occurrences, the team designed two large studies to explore the factors that influence women’s access to HIV and AIDS care in public health services in the three cities. In February 2000, the team completed data collection for these studies, the first of which investigates the barriers to care experienced by women living with HIV. The second study explores the specific barriers to HIV and AIDS care experienced by HIV-positive pregnant women in this region. Based on its Phase I findings, the team has determined to expand its focus on young people living with HIV and AIDS.

According to Ayres, Sí£o Paulo, a sprawling industrial city of approximately 10 million people, was one of the first cities in Brazil to report AIDS cases, and infection rates quickly became the highest in the country. The gay community originally had the highest number of reported infections. Santos, a thriving port city of approximately 410,000 people, reported its first AIDS cases soon after Sí£o Paulo did in the mid-80s. The growth within the homosexual community was explosive, says Ayres, but the number of heterosexual cases quickly rose as well. Because it is an extremely busy port city, Santos has a large transient population and a high number of people involved in drug trafficking. HIV and AIDS quickly spread through sex workers and among drug users. Sí£o Jos é do Rio Preto, a rural town of approximately 350,000 people, in Sí£o Paulo State, has experienced a similar pattern of HIV infection as Santos. According to Ayres, the epidemic was first identified in this predominantly agricultural and commercial area during the mid-90s, when the United States declared its war against drugs in South America. Sí£o Jos é do Rio Preto emerged as the most expedient alternate route through which drugs were transported from Bolivia and Colombia to port cities, and the high presence of drugs fueled the proliferation of HIV. Fear of being identified as a drug user prevented many people from seeking help, and the epidemic spread.

Working closely with Ayres and his team to help support their research efforts, Gruskin has become familiar with the issues facing women in these regions living with HIV who seek medical care. “We re confident that the results of their research will be significant,” says Gruskin. “The results will be particularly important because appropriate interventions can then be implemented on the basis of the findings. The hope is eventually to make access to care in these regions a high priority in order to reduce morbidity and mortality, not only within this specific group but within the general population as well. If this team of experts can determine what needs to be done to control morbidity and mortality within this group, then perhaps the same interventions might be applied to larger groups of women and perhaps to the population at large.”

The Brazilian studies may shed light on care for women worldwide living with HIV. “Women are at greatest risk in most societies,” says Gruskin, who has worked on gender issues for many years, including those involving women s health. According to Gruskin, discrimination against women has fueled the AIDS epidemic. Women worldwide who are HIV-positive have confronted fear, prejudice, and ignorance significant factors in contributing to this discrimination, which in turn has aggravated the many problems associated with the epidemic. Many women fear being tested for HIV, knowing that if they test positive, they may well be rejected by their partners and family members. In many instances, family members also face discrimination, which may lead to expulsion from the greater community. “The importance of considering the human rights component to care of people living with HIV and AIDS cannot be emphasized enough,” says Gruskin. Where the rights of an individual living with HIV are violated, the human and other costs are inestimable, invariably extending far beyond the individual to the community itself. Because women are traditionally the caregivers of the family, when they become ill, the lives of all other family members are affected significantly. When women who are HIV-positive are rejected by their partners or families, out of ignorance and fear, they often have no recourse but to find whatever means possible to make a living. In some cases they become sex workers, passing on the virus to partners. In most instances, however these women find themselves without any means of support for themselves or their children and are unable to pay for medical care. Women who do not get medical attention fare far worse than those who do, and many of them also risk transmitting the virus to their children through childbirth or breastfeeding. Brazil, like many other countries trying to stanch the AIDS epidemic, is facing the additional concern of a growing number of AIDS orphans.

“Increasing people’s awareness of and eliminating discriminatory practices are not easy tasks,” says Gruskin. Even in a culture as tolerant and embracing as Brazil s, fear  not only of HIV itself but also of discrimination, rejection, and social isolation   remains a powerful force. “The work of the Enhancing Care Initiative in Brazil not only reflects our concern for protecting the human rights of all people living with HIV and AIDS, but it also underscores the need to protect all human rights of all people within the country. This vibrant country and its people are remarkable, and they are making great strides in fighting against the spread of HIV. In order to ensure that Brazil can continue to thrive in the future, however, efforts to slow the progress of HIV and AIDS need to be aggressive and concerted and need to include an ongoing focus on the human rights and dignity of all people, within the context of treatment and care,” says Gruskin.