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South Africa’s Longest Walk
How the United States helps and hinders its struggle with AIDS.
By Jean Flatley McGuire
A thin line was visible on the veldt's horizon one day last June in a rural part of South Africa's Eastern Cape, snaking along the only paved road in a treeless expanse of rolling hills dotted with traditional round houses. When the line got to the top of a nearby rise, it suddenly morphed into an energetic procession of almost 2,000 people. Nearly all had AIDS or HIV.
The marchers were making a symbolic "Long Walk to Treatment" to the remote homeland of their beloved Madiba, the Xhosa clan name by which former president Nelson Mandela is known. The walk—which took its name from Mandela's autobiography, Long Walk to Freedom—celebrated his role in promoting access to HIV treatment throughout South Africa, including here in the town of Umtata.
Most of the marchers will die before they ever see the drugs.
Though June marks the beginning of winter in South Africa, few marchers were adequately clothed for cold weather. They had walked for days, in some cases, to gather in a large hall where I waited along with local tribal chiefs and provincial leaders.
For three hours, old ladies, their sons and daughters, and mothers with children described the challenges of living with HIV, and listened intently to the resurrection stories told by three people with AIDS who had started treatment some six months before. They sang songs from the struggle against apartheid, now adapted for the fight against this new oppressor. The energy and solidarity in the hall seemed almost powerful enough to conquer the virus alone.
Over the past four years, I've been part of a unique relationship between the Eastern Cape Province and the Commonwealth of Massachusetts. The province is a new governmental region, made up of two former homelands and part of the former South Africa. Aspects of its history—forced employment-related migration, and serious education and health-care deficiencies—have made the province a high-prevalence area for HIV. Similar in size to Massachusetts, the Eastern Cape struggles with an HIV rate nearly 20 times larger. By a conservative estimate, there are 700,000 infected people in the province, only slightly less than the estimated total in the entire United States.
Throughout South Africa, the infrastructure needed for safe, effective, and reliable delivery of HIV drugs is practically nonexistent. Within the Eastern Cape Province, the situation is especially dire. Potable water is still not available in many areas. Many residents do not live within 5 kilometers of a medical clinic (the baseline set by the United Nations for adequate care). Over 30 percent of households lack toilets. Unemployment is at 55 percent. Infant mortality has remained stubbornly at 60 deaths per 1,000 births. Though the area has a sizable number of mostly well-trained nurses, they are not dispersed evenly across the population and lack the necessary physician backup.
Despite the absence of safe water, reasonable access to care, sanitation—even literacy skills—models for treating HIV in low-resource settings are emerging in the Eastern Cape. Here, the United States is serving as both a help and a hindrance.
Certainly, the United States has contributed to a greater scientific understanding of HIV—of differential viral subtypes, transmission dynamics, and treatment efficacy. The impact of this knowledge has been profound; the capacity to block vertical HIV transmission from mother to child, for instance, has decreased the birth rate of positive babies in South Africa and elsewhere. We have helped knock down barriers, cultural and otherwise, to effective care for this stigmatized disease. With others around the world, we are helping to determine education strategies that lead to prevention.
But despite our contributions in clinical management, including the development of laboratory services and pharmaceutical systems, the United States is a particularly disappointing partner in service delivery. Our international aid efforts usually favor U.S. contractors and makers of pharmaceuticals, medical devices, and durable goods, and often bypass in-country governmental structures that are ultimately responsible for building and maintaining systems of care.
The best responses to the HIV epidemic are locally relevant, locally directed, and capable of being sustained over a long period of time. Unfortunately, the vertical, time-limited, contract-based approaches the United States takes to international assistance are not conducive to achieving these objectives.
Worse yet, we consistently ignore the international community's efforts to minimize confusion and duplication by creating joint funding mechanisms (like the Global Fund to Fight AIDS, Tuberculosis, and Malaria) and joint strategies (like those the World Health Organization is employing to assure a reliable supply chain of HIV pharmaceuticals).
I first investigated the HIV/AIDS crisis in the Eastern Cape when I was an assistant commissioner of health for the Commonwealth of Massachusetts. Today, I serve as an adviser to the Eastern Cape's Department of Health. During my visit in June, I was specifically asked to assess the readiness of the clinical sites that would be the first in the province to distribute HIV antiretrovirals.
Well-informed doctors, nurses, people with AIDS, and citizens, I discovered, are working diligently in urban and rural areas to make treatment access a reality. National and provincial plans have mapped out each site's capacity and oversight. Against the backdrop of the current drug shortage, sites have developed a community-review process for determining who will receive medication. This collective process, virtually unimaginable in the United States, demonstrates how well the victory against apartheid nurtured community building in South Africa.
Nonetheless, in most of the rural settings and many of the urban ones, there are many obstacles to overcome. Rapid screening for HIV and other sexually transmitted diseases is unevenly available. Tuberculosis specimen transport is often delayed, impeding critical treatment decisions and creating ongoing risks for infection. Laboratory systems don't have the mechanisms for analyzing and reporting patients' viral-load values over time.
The inventory and dissemination of pharmaceuticals is centralized in a manner that makes it difficult for local clinics to track what they need. Patient records, important for tracking disease status and treatment eligibility, are practically nonexistent. The increased focus on drug delivery is sidelining important attention to prevention and palliative care.
So was the celebration in Umtata an empty one? Absolutely not. There are many reasons for optimism. The Eastern Cape has developed a sound plan for providing HIV treatment through their regional systems of care. Sorely needed personnel, medications, laboratory equipment, and other health resources are rapidly coming to the area. And, perhaps most important, affected individuals and their communities have been mobilized, not just for a treatment march, but for the long process of building broad-based support, partnerships, and political accountability in the fight against HIV.
How can Americans contribute? First, even at a distance, we can all be informed witnesses to the devastation of this pandemic. Second, we can foster similar awareness within our own communities, and extend it to our political representatives. Third, those of us positioned to participate more directly in the struggle against HIV can stretch beyond our research, service-provision, or consulting responsibilities, and advocate for changes in international aid, especially the lack of responsiveness to in-country priorities.
Finally, we can communicate the lessons we are learning from other countries, including South Africa, which have leaders who actively promote methods of prevention, such as condom use, and where community building is considered an important political and therapeutic enterprise.
Jean Flatley McGuire is the Lorraine Snell Visiting Professor at Bouvé College of Health Sciences.
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Illustration by Janet Hamlin |