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.

 

21 thoughts on “Unnecessary exceptionalism”

  1. Hi Ruby,

    Thanks for your insightful post on the roots and needs (or lack thereof) of exceptionalism.

    Do you think this exceptionalism of certain diseases is necessary to actually bring about change and make people care? I think the action component of vertical interventions is what makes them so desirable (or appropriate, to try and answer your first question): the people involved have a very clear goal, often easy statistics to gather, and it is therefore easy to fund a very specific health intervention. I think if we had simply worked on expanding general care in HIV/AIDS-stricken areas, then the care would not have been as effective at decreasing the prevalence of AIDS or bettering care for patients with the disease.

    It might seem like I am critical of the disapproval of disease exceptionalism, but I do believe horizontal interventions are almost always preferred. In some cases, however, it is easier to more quickly implement a vertical approach. I think another question that is important to consider is how to make horizontal interventions both more feasible and more desired from the policy making and funding standpoints. I am curious to hear what you and others have to think about that.

    1. I think I agree with you in that sometimes exceptionalism can be a useful tool to motivate action on a particular issue, but I also think that striving towards a more “diagonal” approach would be more effective, especially in the long term. I think that completely vertical interventions can be appropriate in the short term, but improving health overall as a horizontal approach strives to do makes more sense to me in the case of a long-term or permanent program.

  2. Hello Ruby,

    A lot of what you say in your post resonated with me. I agree that more holistic approaches need to be taken to promoting healthcare worldwide.

    In response to your first question, I think there are circumstances when a vertical intervention can be justified. The first one that comes to mind is an epidemic. If a highly infectious disease with high mortality rates breaks out in a certain region of the world, I think it would warrant a rapid vertical intervention response. Similarly, if there is a disease that a country has been chronically suffering from, which can be dealt with using appropriate ‘magic bullet’ style interventions, such an action should be considered.

    The issue with these interventions, as you point out is that they detract from broader healthcare programs and compromise general healthcare. This was most apparent to me when in class, Prof. Thomas showed us a pamphlet used by healthcare workers in Ghana wherein the only non-lethal disease was the guinea worm infection, which was the center of all attention and intervention.

    As for the second question you pose, I think interventions guided by a singular goal of health and those which take the context into account are not mutually exclusive. If a program was being designed to say improve health in post-war Sierra Leone, I feel the context would play an integral part in informing the intervention and may even help prioritize goals towards achieving the overall objective of ‘health’. I hope I have not misunderstood your question!

    1. I agree with you in that circumstances such as emerging epidemics warrant vertical interventions, but I think it’s important to think about how we define epidemics and what makes an epidemic over. One could say that because there’s still many new cases of HIV in parts of Africa that we should only be working on vertical interventions for HIV, but that would ignore the broader need for health services for people regardless of their HIV status. I think it’s a tricky game to say we’ll use vertical interventions only in the case of an epidemic or otherwise exceptional circumstance.

  3. Hi Ruby,
    I enjoyed your post and the questions you posed about the true necessity of HIV being treated as an exceptional disease. I think something to consider, however, is the danger in disregarding the complete need of attention being paid to HIV/AIDS. You mentioned that there was a “widespread availability of ARVS” that no longer made HIV exceptionalism necessary. However, although ARVS are widespread in terms of their high numbers of production, they are not easily accessible to all people, especially those living in developing countries. Many impoverished people do not have access to these high priced ARV regimens and need programs that specialize in AIDS to get treatment. Thus, although HIV exceptionalism can create many problems for other much needed health interventions, its total use should not be completely disregarded.

    1. Thank you Silvia for your point. In this post I was mainly focused on regions where HIV interventions have made ARVs widely available, making the effect of HIV much less on the area. I do recognize though that there are still places without access to ARVs, in which case I think a vertical intervention may be useful, but only in the short term, because an area that doesn’t have access to ARVs is likely also without access to another necessary health services so a horizontal intervention would likely have a large impact on the overall health of the area.

  4. Hi Ruby,

    Thanks for bringing out such relevant yet difficult queries in your article.

    As mentioned in my other blog comments, it is very important to understand that one single approach or rule does not apply to every illness or every situation in every country. All approaches have to be tailor-made to suit the circumstances and needs of a particular community and delivered by those who are fully cognizant of the resources available at the disposal the recipients. It is possible that procedures taken should not follow a strictly vertical or horizontal approach, but rather a method that fluctuates depending on the situation. As often is the case, most of the times the approach will become interdimensional to achieve best results, which may very well be the preeminent way to accomplish goals. This is applicable to all issues, HIV or otherwise.

    As far as implementing health care goals in extreme circumstances such as in Sierra Leone, it is very simple. Once a country is free and war has stopped, the new regime that assumes leadership has some basic duties to fulfill, and rebuilding the country is the primary task. True leadership should realize that the first step rebuilding the nation does not mean building infrastructure and buildings alone, but also rebuilding the lives of the nation’s population. This automatically includes all modalities that would improve their quality of life, including the promotion of health. Naturally, if a leader pays attention to providing the public with food, shelter, water, and sanitation, these factors would lead to a healthy environment, providing a foundation for health. Health is not a distinguishable, isolated entity.

    1. Shreya, great comment. What do you think about countries that have leaders that fail to address health (or other basic social) needs? I’m thinking of places like Rwanda, where there is a (relatively) stable government in place, but there is a complete disregard for the health and needs of the people. In that case how does one address health needs? I don’t think that there is a simple solution that will work across all contexts, but rather a general goal of health.

      1. Hi Ruby and Shreya,
        Ruby-great post! It made me think a lot about at what point ‘exceptional’ disease campaigns are acceptable and and what points they are detracting from the broader health care system. I agree with what you and Benton say about the need to turn the HIV/AIDS campaign into a diagonal health approach now that we have many treatment options available and HIV is looking more and more similar to the way we treat other chronic disease states.

        I was intrigued by the discussion you two are having on the role of local government in healthcare, and especially in the role of governments in turning “interventions” into sustainable treatment options. While I agree with Shreya that the government should always be involved in any situation in which they are stable and want to get involved, it does pose a difficult situation when as Ruby suggested, the local government seems unwilling to get involved. In this case, I think ensuring you have the backing of a more permanent institution (such as a UN department) is critical. I have not heard of a sustainable healthcare system built on just donor money, and it’s crucial that some organization is charged with keeping track of long term sustainability. Do you think it’s feasible to get an international organization involved?
        Do you think it’s best to avoid the government altogether in cases where they seem to not put the best interests of the public’s health first, or is it critical to continue to try to appeal for the government cooperation?

  5. Hi Ruby,
    Thank you for your extremely insightful comments the concept of “exceptionalism” and whether it should truly play a role in health care. You make very valid points about how diseases such as HIV/AIDS should not be isolated from overall health care treatment.
    In response to your first question, there are certain situations in which magic bullet intervention can be highly effective. Magic bullet interventions allow direct, focused efforts in which concrete and clear results can be derived. In times of great urgency, vertical interventions are needed to quell to spread of a disease. The Ebola epidemic, for example, required a vertical intervention due to the urgency and potency of the disease. However, all vertical interventions should be implemented with a greater understanding of the context of individual countries. Ultimately, I agree with Prof Mason in that health problems call for a “diagonal approach.” Ensuring strong health care involves building health care systems which can respond quickly to any type of disease outbreak.
    In regards to the second question, context is always necessary with regards to health. The social environment greatly affects health conditions. The social determinants of health we discuss throughout the course, exhibit this. In the case of post-war Sierra Leone, a weakened political structure can greatly affect the delivery and efficacy of health care.
    In sum, I think we need to place an emphasis in successfully strengthening health care systems in the long term, rather than immediately responding to an outbreak via vertical intervention.

    1. Divya – I definitely agree with you that the focus needs to be on strengthening health systems long-term rather than responding to health crises as individual events.

  6. Hi Ruby,
    Your post was very insightful and the points you made were very interesting. In response to your first question, I think cost effectiveness and feasibility do come into play when deciding whether to implement a vertical or horizontal program. Although primary health care creates a long term solution to health problems by addressing their root causes rather than symptoms, they not only require greater financial resources but also more time to implement and see results. If there is a time-dependent disease threatening many people, they might not have enough time to wait for the implementation of primary health care, instead they need a more targeted vertical approach.

    1. Sierra – I think that you have a great point about time-sensitive diseases. If there is a quick fix that will help a lot of people, I agree that it’s worth using a vertical approach. I do however think its necessary that we think about the context that created this short-term devastating disease. It is very rarely the case that large epidemics happen in regions with well-established healthcare systems, and there’s a reason for this. While in the short term it may seem more cost-effective to address only the epidemic at hand, I think in the long term it would make more sense to address the system that creates these problems.

  7. Hello Ruby,
    I found your inquiry of implementing exceptionalism in “extreme” contexts quite intriguing, and I think it brings up Merton’s theory about unanticipated consequences. As Merton states, there is often this assumption that social action will bring about a particular (health) outcome. But what’s so unique about post-conflict areas like Sierra Leone, is that there is unpredictable grounds for rebuilding the state. The post-conflict government has reign for improving infrastructure and reallocating resources. In such a situation, implementing exceptionalism is not so advantages especially if your health goal is sustainability. In such extreme situations of social and political strife, there needs to be more general medical care, community building, and resource distribution. In this way, these measures will not only affect the health outcomes of the people but also produce the potential for positive health-driving infrastructures. In this case, exceptionalism of disease cannot plant the seed about caring about health and building infrastructure as much as general horizontal measures can.

    1. Nikisha – I think your point about sustainability in health systems is really interesting. Given the multi-directional intersections between health outcomes and development, I think it’s important to focus on a system that can make long-term structural changes to improve health in a holistic way, rather than short interventions focused on individual problems. That being said, I think a lot of though needs to be put into deciding where the balance between the two should fall. Do you conduct a less effective intervention that is more likely to be sustainable or a short, highly effective intervention that has no chance of lasting past the end of your funding? This isn’t a question that I think has a definitive answer.

      1. Hey Ruby,
        Finding a balance between short term and long term intervention is definitely the key to successful health care work; however, as you said, it is tricky to establish an appropriate level for each.

        I think that’s partly because, to some extent,success in global health work requires precedent. Part of defining these level of appropriate care is learning from consequences both good and bad. This is where the ethnographic work and studies for HIV Aids, guinea worm, midwifery, etc come into play. Additionally, it is also important to analyze the success of global health models such as PIH, BRAC, etc.

  8. Hi Ruby,

    Thanks for positing. I agree with your point that HIV in some situations need not be treated in such an exceptional manner.

    I think there are a fewer reasons way it is treated in this way. First, there was a lot of fear surrounding HIV when it was first discovered. Although this reaction is present with other diseases I think it played out slightly differently with HIV. HIV is not like Ebola where the problem seemingly went away (Ebola has not gone away of course…but developed countries seemed to have forgotten about it). HIV continued to plague individuals. Thus continual concern and media attention was given to HIV/AIDS.

    Second, when HIV/AIDS programs finally were implemented in developing countries they were pretty successful. There were not just successful numerically but also visually, where patients like Joseph went from being on the brink of death to being productive members of society This satisfying result is hard to let go of. Even though HIV/AIDS does not need as much attention, it is hard to let go of such a satisfying result.

    In conclusion, whether or not a disease gets addressed has a lot to do with societal perceptions of that disease. So what are possible solutions? Well cost-effective analysis could possibly give us better insight into which diseases should be value more and which should be valued less. However, I’m not sure if that alone is enough.

    1. Derana – I think you have a really interesting point about HIV interventions being visually successful. It’s definitely true that we like to focus on the interventions that have clear (visual) benefits, rather than those that may have large impacts on quality of life but are less tangible.

  9. Hi Ruby,

    Thank you for this very well-written post about the exceptionalism shown towards HIV. I very much agree with your argument about the necessary or expected rise of AIDS to the status of being exceptional, but due to an evolution in the approaches to treating it as well as in the social viewpoints and judgements surrounding it, it may no longer be necessary to treat it as such. Though it is a disease that still requires much attention in certain places, and it will always be beneficial to have AIDS specific discussion and support, AIDS is not something that needs to be approached in an extremely vertical manner. As I wrote on Stefanie’s post about the same topic, if there is not a critical mass of prevalence of a certain disease in a place, treating it exceptionally can only hurt the social and cultural structure of that place.

    It will always be necessary to implement health programs into the cultural context of a place, and especially in the wake of an extreme event. Yes, the end goal is health, but the definition of health includes well-being in many senses, and if an organization ignores the historical and cultural setting in which an intervention is being implemented, there is way less of a chance of its being successful.

    1. Zoe – I appreciate your mention of a holistic view of health, not just physical well being. I think that it’s extremely important that we address all aspects of health, not just those that have magic bullet solutions. I also definitely agree with you in that context must play a role in planning health interventions, especially those after traumatic events such as war.

  10. Hi Ruby,

    I really enjoyed reading your blog post. I wasn’t aware that ‘universal health coverage’ and ‘end HIV’ were listed as two separate SDGs which as you pointed out only goes to reinforce HIV exceptionalism, and will continue to until 2030!

    I would argue that the only context in which a magic bullet is appropriate is when there is a healthcare emergency that is threatening to the local populations (note I am making this distinction to demonstrate the fact that in the past, as we saw with the ’emerging disease worldview’, situations that weren’t actual healthcare emergencies to local populations were characterized as emergencies because they posed a threat to the West). I think that others see cost-effectiveness as a valid reason for a vertical approach . However one of Farmer’s arguments that I appreciate the most is that there is no reason to hone in on this idea of cost-effectiveness, we need to steer away from this idea that we have limited resources, because we do not. We need to make the ‘pie’ bigger.

    To answer your last question, I do not think that interventions should solely be defined by the end goal of health. We have to take context into consideration. For post-civil war Sierra Leoneans mental health may be their last priority, and thus, if you are about to go into Sierra Leone providing a mental health intervention, it is vital that you go in knowing that this mentality towards mental health is the one that pervades. This will allow you to think of ways to work around that mentality and have an even better outcome.

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