Enhancing the Care of People with HIV

By Jennifer Goodwin

In a township outside Cape Town, South Africa, two-year-old Zanele is one of thousands of HIV- infected children in her country. She was left behind with no one to care for her as AIDS had taken her entire family and many in her village.

She was lucky to be placed in an orphanage such as the Nazareth House, where food and basic care may extend her life a few years. Thousands of other or-phans in the area are left to fend for themselves. In fact, the "orphan problem" is one of South Africa’s greatest concerns; a significant proportion of its adult population, 30 percent of which is infected with HIV, has been lost to AIDS.

As the number of people infected with HIV in the developing world has exploded, the cost of their care has quickly surpassed the resources available in those regions. In countries where the epidemic is taking its most severe toll, most people do not have access to antiretroviral therapies and routine prophylaxes against opportunistic infections. Thus the search for cost-effective methods for treatment and care has become a global imperative.

Helping countries develop systems to facilitate access to care and treatment is the goal of the Enhancing Care Initiative (ECI), a multinational program recently launched by the Harvard AIDS Institute. ECI aims to improve the care of men, women, and children living with HIV in resource-scarce countries. Funded by an initial five-year grant from the Merck Company Foundation, ECI is coordinated by the Harvard AIDS Institute, with Richard Marlink, the Institute’s executive director, leading ECI’s team of investigators.

"We must work under the assumption that AIDS is a manageable condition in any country," says Marlink. "Even small im-provements can greatly enhance the care of people living with HIV in resource-poor regions. We have an obligation to help people in those areas most affected by AIDS use limited resources effectively."

ECI is based on the beliefs that concrete, practical improvements in care for people with HIV can and must be developed and that these improvements will be most effective when they are developed and implemented by local experts who understand the challenges and possibilities intrinsic to their regions. Thus the heart of ECI lies in its AIDS care teams - groups that are formed by, composed of, and led by people from the countries involved.

To date, ECI has brought together multidisciplinary AIDS care teams in Brazil, Senegal, and Thailand. A fourth AIDS care team is being formed in Kwa-Zulu Natal, South Africa. The teams are made up of regional experts in clinical care, epidemiology, international health, human rights, behavioral science, economics, political science, and public health. The aim of the teams is to initiate meaningful changes in regional AIDS policies. Each team will use data from its research to develop practical, long-term strategies that reflect local needs and realities. A team at Harvard will work with the AIDS care teams and with international agencies to help identify interventions that will take better advantage of current and future therapies and improve the quality of care for people living with HIV and AIDS.

AIDS is more than a medical challenge. Real, sustainable solutions are only possible when many different aspects of the epidemic are addressed with the participation of experts from a variety of disciplines. Epidemiologic experts, for example, can interpret data useful for predicting the spread of the virus. Clinical care experts can help identify new treatment strategies. Social services professionals can provide patients and their families with testing and counseling. Other needs can be addressed by members of advocacy groups working to protect the human rights of people with HIV; by political scientists and economists, who can provide the framework and the tools with which governments can realize policy changes for care programs; and by international health experts, who can provide guidance so that programs comply with international best practices standards. In addition, people with HIV can provide essential insight into the challenges they encounter with on a daily basis.

Efforts to link health care research to government policymaking can benefit from a multidisciplinary approach. To make difficult decisions about funding care programs, governments need medical data translated into financial terms so that they analyze the data on the basis of costs and benefits.

"In order to convince finance and planning ministries to allocate resources to AIDS care and HIV prevention, it is imperative that we speak in monetary terms," says David Bloom, deputy director of the Harvard Institute for International Development and a member of ECI’s team of investigators. "We must demonstrate that improved care for HIV/AIDS patients translates into avoided costs for governments, improved quality of life, and greater social equity. By applying economic tools to medical and health data, the ECI AIDS care teams can help governments identify and prioritize cost-effective steps to improve care."

An advisory panel, the International HIV/AIDS Care Resources Group, is being assembled to support and counsel the ECI participants. This group has invited the participation of several leadership organizations, including UNAIDS, the World Bank, the World Health Organization, the Centers for Disease Control and Prevention, the European Commission, and several national ministries of health. The group will provide the AIDS care teams with recent data, ensure that research activities conform to international best practices standards, and propose solutions that comply with international ethics guidelines.

To facilitate the sharing of knowledge, the ECI team at Harvard is designing an integrated groupware and web-based system that will contain new epidemiologic observations, clinician-to-clinician questions, and clinical guideline development efforts as well as present on-line access to research papers and moderated symposia. A virtual library will provide advanced access to the latest international research and support literature.

"The Enhancing Care Initiative will reach beyond people living with HIV in the countries involved," says Daniel Tarantola, executive secretary of ECI’s International HIV/AIDS Care Resources Group and chief policy advisor at the World Health Organization. "The process by which this initiative will take regionally produced knowledge and apply it to optimizing the care and treatment of HIV/AIDS in other countries will also better prepare us to cope with future global health crises."

- Jennifer Goodwin is project coordinator of the Enhancing Care Initiative.