All posts by Ruby L Steedle

Unnecessary exceptionalism

What makes a disease exceptional? In the case of HIV/AIDS, it was the long-term effects on differing demographics that elicited exceptionalism. Because of the multi-generational repercussions of HIV infection and the associated socio-economic impacts, HIV was deemed a cause necessitating an exceptional response, characterized by separate care settings, funding, and sponsoring organizations. However, as the contexts of HIV and HIV care and treatment have evolved, so has the necessity for exceptionalism.

As Adia Denton mentions in her book, HIV/AIDS is disproportionately funded (40% of funding vs. 18% of disease burden) in Africa, where prevention and treatment programs are still largely vertical endeavors. Advocates of these programs cite the “multiple vulnerabilities” of those infected with HIV, including the lingering stigma associated with the disease. These “exceptional” circumstances have been used to justify an entirely different framework of care for HIV, including separate clinics, additional food and other support for those infected, and whole new agencies such as UNAIDS devoted exclusively to the disease (Denton). While the interventions haven’t followed a purely vertical model, as in the example of the guinea worm given by Amy Moran-Thomas where the interventions (filters and larvicides) deliberately avoided addressing any issues other than the precise disease the program was designed to target, their primary focus has remained on treating HIV as a disease so “exceptional” that it could not be done in the context of primary healthcare (Biehl and Petryna).

Whereas this model may have been appropriate during the peak of the epidemic when there was truly no end in sight, today’s widespread availability of ARVs eliminates the need for such a solution. Although ARVs have previously been regarded as a “magic bullet” – a technological solution to the crisis of HIV – their reality is grounded, and should be integrated, within the same foundations as basic healthcare. ARVs don’t erase or reverse HIV infection, but are rather another aspect of one’s long-term medical reality, just like medications for hypertension, diabetes, or any other chronic illness (Smith and Whiteside). The separation of HIV/AIDS care and ARVs from the rest of healthcare is therefore predicated on stigma and perceived exceptionalism rather than foundational differences or necessity. Integrating HIV care into general health care can both bolster continuity of care for those infected and improve and expand the care available to the general population.

Calls for more universal healthcare are widespread but frequently come separately from efforts to address HIV/AIDS, including in the UN’s new Sustainable Development Goals, where “achieve universal health coverage” and “end the HIV and AIDS” are given as two separate targets under the development goal of “Good Health and Well Being.” Expanded focus on healthcare as a whole doesn’t have to mean the end of programs to combat HIV/AIDs, but the two should not be separated as their goal – improving health – are the same (The Conversation). While HIV is a unique disease in its widespread prevalence, multigenerational impact, and disparate effects on various populations, it is not wholly unique in the kind of care it necessitates, and should not be treated in such an exceptional manner.

 

Discussion questions:

  1. In what contexts is a magic bullet or vertical intervention appropriate? Does cost-effectiveness and feasibility of expanding primary care/creating a horizontal intervention affect the decision to implement a vertical approach?
  2. How can we implement health programs in “extreme” contexts (post-civil war Sierra Leone, for example) without making assumptions about the effects of such contexts on health outcomes? Does such a context matter or should interventions be defined by only the end goal – health?

 

Works cited:

 

Benton, Adia. HIV Exceptionalism: Development through Disease in Sierra Leone. Minneapolis: U of Minnesota, 2015. Print.

 

Moran-Thomas, Amy. “A Salvage Ethnography of the Guinea Worm.”When People Come First: Critical Studies in Global Health. By João Guilherme. Biehl and Adriana Petryna. Princeton: Princeton UP, 2013. 207-39. Print.

 

Penfold, Erica. “New Development Goals on Health Need More Work to Be Realistic.” The Conversation. N.p., 21 Sept. 2015. Web. 22 Oct. 2015.

 

Smith, Julia H., and Alan Whiteside. “The History of AIDS Exceptionalism.” Journal of the International AIDS Society. The International AIDS Society, 3 Dec. 2010. Web. 22 Oct. 2015.