When Exceptions Become the Norm

In 2006, sub-Saharan Africa finally began to see effective antiretroviral therapies for HIV take hold. For years, the region had been deemed “too complex” for these life-saving drugs, with former U.S. Agency for International Development (USAID) head Andrew Natsios suggesting that Africans lacked the conception of Western time required to take the drugs on the prescribed schedule. But activists had finally succeeded at getting pharmaceutical companies to lower the price of HIV drugs and to make the drugs available for free or at low cost to the world’s poor. This was no small feat. The conventional public health wisdom was that HIV drug regimens were too costly for the poor to afford and too complicated for the uneducated to comprehend, and, further, that health systems were too weak to effectively diagnose and deliver drugs to those who needed them the most. Only a decade later, though treatment is provided free of charge or at low cost in most African countries, a sizable number of people who need the drugs cannot access them. In 2013, UNAIDS estimated that 80 percent or more of those eligible for treatment in 14 African countries were not receiving antiretroviral therapy.

The activism also challenged a paradigm of public health that prioritized prevention over treatment, containment over therapeutics, and cost and efficiency over equity. Activists’ hard work to organize around access to antiretroviral therapy—even when couched in a broader health and social justice agenda —had inadvertently buttressed claims that HIV was exceptional. By the middle of the first decade of the twenty-first century, HIV exceptionalism—the idea that HIV/AIDS was an exceptional disease that requires an exceptional response—had become a global health mantra.

At the heart of HIV exceptionalism was an attempt to respond to a disease that poses a unique threat through unique techniques. To fight the spread of HIV, health-care organizations advocated treating the disease differently than other epidemics—with a siloed set of resources and approaches. This led to the creation of separate HIV/AIDS funding streams from nongovernmental organizations, as well as the separation of HIV/AIDS personnel and institutions from other public health initiatives. This approach, experts argued, would get at the heart of the epidemic’s unique sociopolitical and cultural challenges, including gender inequality, stigma and discrimination, poverty, sexual and reproductive decision-making, and diagnostic and clinical care capacities in the developing world.

But the exceptionalist approach has been for the worse. In fact, HIV exceptionalism often allows the disease to be seen as an emergency, rather than as one issue to tackle within a part of a larger health overhaul. In other words, the framing of HIV/AIDS as an emergency has overwhelmed efforts to build robust and resilient health systems in Sierra Leone, for example, and elsewhere. And now the approach has spread beyond HIV, contributing to bungled international responses to other issues, including the Ebola virus.

THE TROUBLE WITH SPECIAL CASES

After the Sierra Leone civil war ended in 2002, politicians, civil society, and the international community focused on rebuilding the nation on multiple fronts: it would have to hold accountable those who committed crimes during the rebel insurgency while also repairing its social fabric. But the precise social repairs were usually circumscribed by the interests of donors. What emerged was a far-ranging portfolio of initiatives aimed at demobilizing and reintegrating soldiers, professionalizing Sierra Leone’s police force and military, strengthening anticorruption accountability within the government, rebuilding the nation’s civil service, and repairing its public works. In Sierra Leone’s health sector, the march toward rebuilding meant constructing a system of disease-specific programs and projects. These programs, for example, provided pregnant and lactating women with free health care and waived medical fees for children under the age of five. Although these initiatives should have, in theory, indirectly promoted better health across the board in Sierra Leone, they often produced fragmented and fragile health systems.

In turn, the health system does not benefit citizens at large. It targets specific illnesses with little regard for other problems. Like HIV, each disease is treated as exceptional, and that exceptionalism diminishes individuals’ overall access to well-balanced care. Around the time that HIV exceptionalism took off, more than half of Sierra Leone’s government’s health budget was spent on HIV programming. Only one percent of Sierra Leone’s population at the time, however, was estimated to be HIV positive. Seventy percent of donor funding in the region went to vertical, or disease-specific, initiatives in the decade following the civil wars in Sierra Leone and Liberia. Developed-country and international donors currently provide more than three-quarters of the Sierra Leone Ministry of Sanitation and Health’s budget.

Once exceptionalist public health policies take over, it is difficult to undo them. In Sierra Leone, HIV programs still receive funding that is separate from other public health initiatives, enjoy their own treatment centers, and operate underneath the office of Sierra Leone’s president, rather than under the aegis of the government’s health administration. Although this practice is not used for other vertical health programs, these targeted approaches usually yield low-tech, disease-specific initiatives that make it difficult for other groups to find precedent for making broader, overarching health infrastructure improvements, such as better trained clinicians and health scientists.

By early 2015, the Ebola crisis in Sierra Leone—as well as in neighboring Guinea and Liberia—had wreaked havoc on already fragile health systems, destabilized economies, and exposed tremendous flaws in the world’s global epidemic response system. Most health resources were directed towards curbing the epidemic. This, coupled with a population too fearful to seek health care in overrun and understaffed health facilities, has also exposed the limits of vertical models, which simultaneously fail to inspire confidence among the populace in their health system as they also fail to address the conditions for which they are best equipped: HIV/AIDS; malaria; tuberculosis; and diarrheal diseases. Put more succinctly, routine services provided through vertical models were put on hold as resources were used to address Ebola.

As Ebola’s outbreak in West Africa wound down in 2015, intergovernmental agencies like the World Health Organization, as well as nongovernmental organizations like Doctors Without Borders, took stock of their response and the multiple shortcomings they observed that during efforts to rebuild health systems. In the war’s aftermath, donors and Sierra Leone’s government had not made the training of nurses and doctors a priority, nor had they focused on revamping health facilities and improving generalized epidemic control measures. An independent panel from Harvard and the London School of Hygeine and Tropical Medicine on the global response to Ebola suggests that countries lacked the core capacity for preventing and responding to major disease outbreaks, and that research capabilities to rapidly produce, share, and analyze data were minimal to nonexistent prior to the outbreak.

But for some groups, including the World Health Organization, USAID, and the Department for International Development, the failed response to the Ebola crisis did provide an opportunity to improve their approach toward building robust and resilient health systems. Indeed, calls for reform and better responses to health emergencies like Ebola have coincided with the release of the UN’s sustainable development goals. In the formation of those goals, many experts, including Queen Mary University of London political scientist Sophie Harman, have argued that donor agencies must move away from providing funding to specific programs or toward combatting specific epidemics and, instead, work toward funding comprehensive health-care initiatives.

In May 2015, noted infectious disease physician and anthropologist Paul Farmer highlighted the pitfalls of donor-driven vertical initiatives, and noted that they inadvertently contributed to the rapid spread of Ebola. Offering Rwanda as an example, he wrote, “post-genocide Rwanda offers a striking counterpoint to—and an example for—the countries most affected by Ebola: Rapid declines in mortality in Rwanda are the result of policy and investment rather than dumb luck or happenstance.” Here, he emphasizes that Rwanda’s policies of investing in, educating, and producing a large cadre of health workers, and offering comprehensive care from primary (well baby and immunization initiatives) to tertiary levels (e.g. cancer control and trauma surgery), have produced the kinds of health outcomes that vastly improve overall quality of life for the nation’s population. Instead of treating dangerous diseases as special cases, making general improvements to health systems, it appears, can indeed be a rising tide that lifts all ships.