Dec. 1 is World AIDS Day, a day intended to increase awareness about a disease that has led to the deaths of more than 35 million people since 1981, when the first cases appeared among gay men in the United States.
From the outset, AIDS has been intensely “political.” Power and inequalities shape vulnerability to HIV infection, and representation and decision-making processes affect resource allocation and policies. To end the AIDS epidemic by 2030, a goal set by the Joint U.N. Programme on HIV/AIDS, means analyzing the politics of the disease.
Over more than a decade, we have interviewed dozens of AIDS advocates, health policymakers and people living with HIV and AIDS in South Africa, Uganda, Swaziland, Ghana, Zambia, Tanzania and the United States.
Politics matters in big and small ways
In Africa, the first documented cases of HIV emerged in the mid-1980s. National-level political considerations shaped countries’ initial responses to the disease. In South Africa, President Thabo Mbeki’s African Renaissance views stressed African solutions for problems. His suspicion of the West meant South Africa questioned the science behind AIDS and neglected to provide life-prolonging AIDS drugs that millions needed.
In Uganda, it was a different story. Newly in power after a civil war, President Yoweri Museveni leveraged the disease to gain resources from donor governments like the United States. In Senegal, another proactive country on AIDS, the government’s close ties to Muslim leaders facilitated widespread community-based education on HIV prevention.
Countries feared the instability of disease
Globally, it’s not possible that AIDS would have gained billions in donor funds in the new millennium had activists and health experts not argued that the disease destabilized societies and contributed to insecurity concerns. This message became particularly effective after 9/11. Activists also stressed religious obligations to care for the sick, arguments that resonated with the evangelical Christians who had supported President George W. Bush in 2000.
This message helped prompt change. In 2003, President Bush announced the U.S. Emergency Plan for AIDS Relief (PEPFAR), which has supported AIDS treatment, care and HIV prevention programs in 50 countries. The global community also established the Global Fund to Fight AIDS, Tuberculosis and Malaria in 2002, a funding mechanism that has saved 27 million lives.
These numbers obscure the power imbalances that exist between donors and host countries. Even when donors do not directly dictate how African governments should run their AIDS programs, they may still constrain decision-making.
In 2011, the Swazi government poured scarce time and resources into hiring consultants to meet Global Fund requirements for funding applications, only to see the entire funding round canceled at the last minute. This meant Swaziland — now called eSwatini — the country with the world’s worst HIV epidemic, squandered money, time and effort.
Politics also undergirds AIDS programs at the community level
Donor programs emphasize technical solutions and measurable outcomes, but these are not enough to end the disease. AIDS interventions in Africa often fail due to a misalignment between donor objectives and local priorities. Donors may not question the most marginalized people such as women, youth, migrants and social minorities about what they need or want.
Here’s an example: Women and youth sometimes report not taking their AIDS medications or skipping clinic appointments because they don’t want a spouse or parent to know they are HIV positive. Young women in Zambia fear their parents will disown them; wives fear that if a husband leaves, they will be unable to feed their children. Even community leaders with HIV fear losing their social status. When these concerns — and the inequalities that underlie them — get lost in donors’ efforts to achieve outcomes, their projects then may not be as effective as they could be.
Donors can affect grass-roots power dynamics
As research in Zambia and Malawi shows, health-care programs create new opportunities for some people to gain status and material benefits. Charismatic individuals who understand donors’ expectations and speak their language (literally and figuratively) become “brokers” between locals and outsiders, able to portray grass-roots problems in ways that appeal to donors.
In Zambia, these intermediaries stressed women’s entrepreneurship to gain grants for small business projects. These women benefited, but not all communities have brokers to bring in these types of resources.
Donors also may exacerbate existing social inequalities. For example, about 30 percent of new HIV infections globally are among people ages 15 to 24, with young women being more vulnerable than young men. In Africa, an estimated 60 percent of the population is under 25 years of age, making people in this group crucial players for ending AIDS.
But these young people often have minimal representation on national AIDS policymaking and funding bodies. These are the committees that provide opportunities for government officials to dole out resources, reward supporters and increase their power.
As research on the participation of LGBTQ people in AIDS policymaking indicates, key populations with high risk of HIV infection may be consulted, but their voice diminishes as budgetary allocations and policy decisions are made.
In Africa, youth (and other marginalized groups) lack significant representation. More challenging, the issues that make youth most vulnerable to HIV infection — poverty, substance abuse, mental health disorders and violence — rarely take center stage for donors. For example, Africa’s few mental health programs rarely target youth, though doing so could foster HIV prevention and increase adherence to AIDS treatment.
Sixty percent of Africa’s unemployed are youth, who, feeling pressure to provide for their families, may engage in risky sexual behavior. This is particularly true for young women. Development and health experts argue that changing this dynamic will require greater long-term economic opportunities for youth, including short-term cash transfers. Studies show that young women in Malawi used these grants to start businesses, and that low-income households receiving such grants in several countries had higher school enrollment rates.
One of the U.N. Sustainable Development Goals is to end AIDS as a public health threat by 2030. According to the foremost experts in the field, meeting this goal will require learning from experiences in responding to the disease, including paying closer attention to socioeconomic, gender and political inequalities. In the wake of declining public interest for AIDS and donor funding cuts, a commitment to greater power and representation of marginalized groups may be more important than ever.
Amy S. Patterson is professor of politics at University of the South, and author of “Africa and Global Health Governance: Domestic Politics and International Structures” (Johns Hopkins University Press, 2018).