In America, the image of HIV/AIDS activism has consistently been perpetuated and co-opted by the primarily upper class, cisgender, gay male members of the LGBTQ+ community. While I have no intention of undermining the experiences of suffering of anyone with HIV, the dominant narrative perpetuated by films like The Normal Heart[1] are wildly under-representative of the complexities and burden of this disease. The reality of HIV/AIDS – that it is one of the largest killers of people in the lowest income countries worldwide such that 66% of all HIV related deaths occurred in sub-Saharan Africa alone in 2014[2] – is one that can’t be ignored.

The privileging of the upper-class, western HIV experience in the understood cultural history of this disease is implicated by the example of Haiti, which Paul Farmer catalogs in his chapter, “The Exotic and the Mundane”.[3] Farmer argues that the spread of HIV in urban Haiti (mostly centered in the suburb Carrefour, home of Port-au-Prince’s redlight district[4]) is a textbook example of the “geography of blame.” Measures of guilt and accusation have been tied to the spread of HIV since it’s initial rise. Though the conservative right in America were quick to blame the “immoral,” urban men who had sex with men (MSM) for the spread of the disease, placing a moral judgment on a biological disease outcome and therefore conflating the biological body with the moral one, seropositive Haitian immigrants in America “denied homosexual activity or intravenous drug use.”[5]

Farmer criticizes American media outlets for effectively blaming Haiti for the American HIV epidemic, exoticizing and alienating the nation, as exemplified by Vanity Fair’s description of Haiti as the “black hole” of our hemisphere[6] in addition to exploiting Haitian voodoo acts as a potential source of transmission[7]. The relationship between cases of HIV in America and Haiti are clear: wealthy American vacationers came to Port-au-Prince and transmitted the disease to local sex workers, who, though many self-identified as heterosexual, would be paid into homosexual activity.[8] This conflated issues of homophobic sentiment in the U.S. with racial, gender, and economic inequality in Haiti. From here, it was found that the largest population of HIV positive individuals in Haiti were female sex workers, and Haiti became the evidence needed to suggest that HIV transmission was “more efficient” from men to women.[9] By 1986, it was impossible to deny that heterosexual activity was an ‘accepted risk factor.’[10]

Soon, a grand sentimental switch occurs in the evangelical right. Franklin Graham convinced the senator Jess Helms that “AIDS afflicted the ‘blameless’ just as often as it afflicted homosexuals.”[11] By positioning AIDS efforts towards that of the blameless, inherently moral children, we quickly saw a huge increase in the political capital of the west in AIDS treatment. The Clinton Administration, which had at first sided with pharmaceutical companies in the debate surrounding South Africa’s Medicines Act,[12] an attempt to provide more affordable, generic versions of antiretroviral therapies to HIV positive individuals, soon sided with the suffering and began providing aid directly to mothers and children who were HIV positive. By applying a moral judgment on those who were deserving of aid, there becomes a complication in the way that medications are transferred.

However, it was also this moral judgment that stirred action from abroad. The 3×5 campaign, which the WHO established as a goal to provide ARV treatment to three million people living with AIDS by the end of 2005, was unique in its efforts of establishing success as a measure of the number of people reached as opposed to the amount of money raised. By humanizing donor support under the framework of the “deserving” ill, we see the perpetuation of the implications of moral medicine. While it took until 2007 for the 3×5 campaign to be completed, it was considered a massive success in “galvanizing” the global AIDS effort.[13] By centering this mission around that of the suffering children – the people behind the disease and not the financial needs of the disease treatments itself – we see a re-affirmation of the complex power structures inherent in the way that the wealthy choose to spend their money – along moral and political lines.

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[1] Cast by almost exclusively white males, it is very clear where Hollywood is looking to spend their money insofar as narratives surrounding the HIV crisis.

Murphy, Ryan, Larry Kramer, Scott Ferguson, Julia Roberts, Mark Ruffalo, Jonathan Groff, Jim Parsons, Matthew Bomer, Taylor Kitsch, Julio F. De, Alfred Molina, Cliff Martinez, Adam Penn, Danny Moder, and Larry Kramer. The Normal Heart. , 2014.

[2] The American Foundation for AIDS Reserach. http://www.amfar.org/worldwide-aids-stats/.

[3] Farmer, Paul. Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press, 1999. Print.

[4] Ibid. 103

[5] Ibid. 99

[6] Ibid. 100

[7] Ibid. 106

[8] Ibid. 119, 122.

[9] Ibid. 113

[10] Ibid. 114

[11]Messac & Prabhu, Redefining the Possible: The Global AIDS Response. Reimagining Global Health: An Introduction. ed Paul Farmer. Berkeley, Calif: University of California press, 2013. Print. p 127.

[12] Ibid. 122

[13] Ibid. 114

In her book, Professor Benton writes, “Herein lies the double-bind of HIV exceptionalism: to deem HIV a run-of-the-mill public health problem is to understate one of the most challenging biomedical and social problems of our time.  When we ascribe such enormous cultural weight to the disease, however, it becomes almost impossible to justify sublimating HIV to a broader health care agenda–even in low-prevalence settings.”  Throughout the entire book, Professor Benton highlights how HIV/AIDS in Sierra Leone has become an exceptional disease; almost all health development programs and funding is HIV-related, while HIV prevalence is not actually that high (~1%).  This brings us back to our discussion about unintended consequences–while providing care for HIV/AIDS patients is important, and indeed a ‘good’ thing, through the reading we see that these disease specific health interventions can take away funding from other diseases and health issues that are less ‘sexy’/’attractive’ to donors, and can therefore leave people sick and at risk of mortality and morbidity from diseases that could have been prevented through primary care.

I must admit, I chose this topic to blog about for a reason.  Over three years I have conducted cardiovascular research in Kenya and assessed the rising rates of chronic non-communicable diseases (CNDCs) in the country.  Over the last year or so I have been researching ways to integrate chronic non-communicable disease care with HIV/AIDS care structures that are already in place because of high funding for HIV/AIDS programs.  To me, it makes sense to integrate HIV (which is a chronic disease with proper treatment and adherence to care) with cardiovascular, diabetes, and hypertension care because they require similar things–adhering to drug regimens, living healthy lifestyles with proper diet and exercise, counseling, support systems, etc.  But something that I’ve struggled to answer is that by integrating HIV/AIDS with CNDCs in health care structures, are we undermining the severity and complexities of the HIV/AIDS epidemic?  By integrating care, would we be cutting options for poor persons living with HIV/AIDS, people who are already at higher risk for discrimination, stigma, poverty, etc.?  While there are unintended consequences of creating HIV-only health interventions, what are the possible unintended consequences of integrating care structures?

This relates back to the debate between the primary health care (PHC) movement and the selective primary health care (SPHC) movement.  Although both the PHC and SPHC movements were in some ways trying to address declaration III of the Alma Ata: “Economic and social development, based on a New International Economic Order, is of basic importance to the fullest attainment of health for all and to the reduction of the gap between the health status of the developing and developed countries. The promotion and protection of the health of the people is essential to sustained economic and social development and contributes to a better quality of life and to world peace,” the PHC movement was a horizontal approach and the SPHC movement was a vertical one.  Like the HIV/AIDS programs highlighted in Professor Benton’s experiences in Sierra Leone, the SPHC movement was specifically targeted and in some ways much more practical than the idealistic PHC movement.  This raises the question of how much idealism and how much practicality make up good health policy?  Is practicality more useful in policy-making than idealism?  Were the health gains brought about by the vertical SPHC movement better than what might have occurred from the PHC movement?  In my opinion, while the SPHC movement didn’t address or even come close to attaining access to primary health care for all, I think that the PHC movement was too broad and that without specific funding guidelines would have made even less gains than what actually occurred.  What are the unintended consequences of creating a broad public health intervention, and what are the unintended consequences of creating specific interventions?

I think that the HIV/AIDS interventions described in the Benton book really highlight what we’ve been struggling to find an answer to all semester in class: How can we do something good for health that doesn’t somehow also have unintended negative impacts?  In the book we see that HIV/AIDS funding comprised more than half the country’s health budget in 2004, but in many cases, “HIV exceptionalism actually serves to amplify existing disparities.  On the other hand, it also provides a means by which poorer HIV-positive people can benefit from a health care system that normally privileges the priorities of its wealthy donors.”  Thus it seems to be sort of a damned if we do, damned if we don’t situation–we want to help sick people, but we also don’t want to hurt other sick people in the process of that, so what do we do?

Questions:

1. In the case of Sierra Leone are there any solutions to the problems created by HIV exceptionalism?  Would strengthening primary health care systems in order to prevent preventable diseases inherently harm people living with HIV/AIDS who already face poverty, stigma, and other inequalities?
2. When creating health policy and health interventions is practicality or idealism more important/useful?  What are the possible negative outcomes that can occur by using one or the other?
3. When trying to get funding from donor organizations and donor countries who should be in control of determining what programs are funded with this money?  Is there really anything we can/should do to influence where donors put their money?  Is it bad for programs that have unintended consequences to be funded in the first place?  Should donors therefore just stay out and not help?

Sources:

Alma Ata Declaration.

Benton. 2015. HIV Exceptionalism: Development Through Disease in Sierra Leone. Minneapolis: University of Minnesota Press.

Cueto 2004 The Origins of Primary Health Care and Selective Primary Health Care. American Journal of Public Health 94(11)1864-74.

Farmer, A. Kleinman, J. Kim and M. Basilico, eds. 2013. Reimagining Global Health: An Introduction. Berkeley: University of California Press.

In several of the class readings that touch on both anthropological and global health perspectives on HIV/AIDS and attempts to control and treat the disease around the world, a theme that arises again and again is the one of “rights.” There is, of course, the apparent “right to know” the HIV-status of someone in your family or community and the right to “know your rights” (Biehl et al., 93) in navigating the HIV-positive identity, amongst other “rights” that seem to illuminate a projected path of dignity after diagnosis, and dignity in disease.

Throughout my own work with patients who must navigate the social circumscriptions of their health statuses and health choices, I have encountered other “rights” that patients either seek to engage: the right to be ill, the right to their identity as it either transforms through illness or does not, and – in an amalgamation of the two – the right to be an ill person. The meanings of these can be nebulous, and certainly fluid between individuals and contexts of illness. They are, however, important to the development of an inclusive and thoroughly caring rubric for the protection of human health.

Since its recognition as a “distinct clinical syndrome” in 1981, HIV/AIDS and discussions about the disease have permeated public concern about health and captured the focus of international health objectives (Farmer, 60-61). Due to its prevalence in the public imagination about transmission, socialized mythologies have arisen, type-casting the apparently susceptible based on initial circumstances of visibility amongst HIV/AIDS victims. Members of the LGBTQ community, Haitians, drug-users, and people believed to be of a certain form and level of sexual activity where they may make sexual contact with these “types” of people (especially through “anal intercourse” [61]) are among some of the people who did, and still do, experience judgment and are inundated with concern (either personal, social, or both) about their HIV-statuses. Additionally, cultural pictures were painted with related assumptions about the lifestyles and habits a person susceptible to or diagnosed with HIV/AIDS enacts; these mythologies continue to reproduce themselves through certain tactics for sexually-transmitted illness screening as well as the marketing particulars of prevention and awareness programs. In Zimbabwe, Dr. Beth Barr reports that the stigma which links HIV transmission to certain behaviors, as well as certain frightening consequences of HIV/AIDS, repels people – particularly sexually active youth – from counting themselves among those in need of screening, protection, and possibly treatment. The co-production of a sort of HIV/AIDS-identity by 1) beliefs about the transmission and progression of the disease and 2) the moral valences of the behaviors believed to be responsible has driven people away from testing and treatment for fear of having to surrender their personhood in exchange for this frightening and unappealing identity (Mwakalyele, 2015).

In HIV Exceptionalism, Benton writes how, in Sierra Leone, there are established ways of appropriately disclosing one’s HIV-positive status, and, thus, how there exist established ways of appropriately enacting HIV-positivity. The performative value of disclosure of one’s status, as Benton discusses (67-88), represents a social process of transforming the identity of the person – from healthy to sick, from presumably HIV-negative to certainly HIV-positive, from one type of person to another type of person (Benton discusses the varied assumptions and cultural valences that orbit “HIV/AIDS” as it has been constructed in the social imagination) – that becomes inscribed on the the biological process of infection and disease within the body.

The social processes that hinge HIV/AIDS onto socially-projected information about identity and conduct, as well as that connect the perceived severity of the disease to equally severe, implicit moral allegations stemming from socialized fictions of AIDS etiology contort the social privilege of those experiencing the disease from all angles: there are intense personal, cultural, religious, interpersonal, public, and bodily sensations that follow diagnosis. The right to retain and mold one’s own identity in and through illness is squeezed through an apparatus of the “rights” of others “to know,” the consideration for the health of the community, and the urgency imbued in certain forms of disclosure. While disclosure proves a sometimes-useful tool to cultivate social support and build trust, it mandates a surrender of control over one’s own health information (Benton, 71), as well as a relinquishment of the way one may be perceived into a realm of public assumption and judgment, where one’s conduct, personhood, and legacy may be discriminated against, misread, and miscarried.

Negotiating a balance between the “rights” to community awareness of infection and the patient’s right to preserve their personhood in a climate of mythology and judgement circling HIV/AIDS may break down barriers of socialized illusions about susceptibility to transmission, and subsequently may not only strengthen prevention but also render every member of a community equal in sharing concern about HIV/AIDS transmission. Thus, each member of a community is called to responsibility in creating an environment of participation and proactivity to support the health of the whole community. Establishing a livable balance for those living with illness between the risk of stigma and the protection of others, reconstructing the cultural storytelling that once seemed to safeguard the uninfected, and cultivating attitudes of shared responsibility and equal susceptibility is integral to true protection, as well as fair and successful distribution of knowledge, prevention, treatment, care, and dignity. This, in my opinion, is activism.

Discussion questions:

1. What concrete problems do you see with the stigma that underlies disease and the effectiveness of appealing to community awareness and/or delivering screenings, treatments, and care?

2. Is it possible to untangle the realities of transmission from the cultural etiologies and local beliefs that are important to respect when developing strategies for responding to infection and disease internationally?

3. What are the dangers of these sweeping cultural mythologies about transmission and susceptibility to disease, which inaccurately depict certain “types” of people as carriers from which the uninfected should distance and protect themselves? How might these forms of storytelling about disease create yet more inequality and prove damaging to overall health in a community?

Sources:

• Benton, Adia. 2015 HIV Exceptionalism. University of Minnesota Press.

• Biehl, João, and Adriana Petryna. 2013. When People Come First: Critical Studies in Global Health. Princeton University Press.

• Farmer, Paul. 1999 Infections and Inequalities. Berkeley: University of California Press.

• Mwakalyele, Ndimyake. 2015 Stigma, Complacency Threaten Zimbabwe’s Gains in HIV/AIDS Fight. http://www.voazimbabwe.com/content/stigma-complacency-threaten-hiv-gaings-fight/3013729.html accessed October 20, 2015.

During the 1990s and 2000s, HIV/AIDS activism made huge strides in reducing antiretroviral treatment (ART) prices and making HIV treatment more globally accessible. Through extensive human rights campaigns, activism efforts, and support from a host of governmental and supranational bodies, expensive drugs that were once deemed not cost-effective to provide in developing nations were made available to many of the world’s poor suffering from HIV/AIDS. The authors of Reimagining Global Health note that “The lowest available annual per-patient price of the most common first-line HAART regimen in the developing world fell from $10,000-$15,000 in the late 1990s to $300 in 2002 to $87 in 2007” (Farmer et al., 2013). For many infected with HIV, these improvements meant that HIV/AIDS would no longer be a death-sentence, but could be managed as a life-long chronic illness.

Much of this price-drop was attributed to the increased production of generic forms of brand-name treatments. Through partnerships with governments of developing countries and adapted business models, generic drug manufacturers were able to sell generic antiretrovirals at set—and comparatively low—price points (Farmer et al., 2013). This new wave of generic antiretroviral drug production was spurred in part by the passage of the South Africa’s Medicines Act of 1997. This act gave the government the right to allow compulsory licensing of brand-name drugs in the case of a public health emergency, meaning that patented antiretrovirals could be made by generic drug manufactures without permission of the patent-holder. Although 39 pharmaceutical companies filed lawsuits against the act in South African courts, political and social support for the Medicines Act caused them to withdraw their complaint three years later. Indeed, later that same year the World Trade Organization recognized that South Africa had not violated trade agreements concerning intellectual property rights, further solidifying the precedent that public health matters could override intellectual property rights (Farmer et al., 2013).

While the HIV/AIDS movement for access to ART is a truly remarkable example of harnessing social and political forces to make life-saving pharmaceuticals available in resource poor settings, it stands as the exception to the rule. Indeed, as Nicholas King describes in his article “Security, Disease, Commerce: Ideologies of Postcolonial Global Health,” pharmaceutical companies continue to have little incentive in developing effective and affordable treatments targeted at populations of developing nations. Not only is the Western pharmaceutical industry ill-designed to cheaply produce and sell important medicines to developing nations, but these same manufacturers whose product is inaccessible in poor settings continue to fight against the production of cheaper generic alternatives in non-Western countries—despite the public health importance of the medicines and the low-purchasing power of developing nations.

The battle surrounding patent protection is far from over. Recent trade negotiations concerning the Trans-Pacific Partnership—a trade agreement that would link nations including the United States, Japan, Australia, Canada and Chile, among others—are rife with controversy over the issue of pharmaceutical patenting. Many countries in the partnership want the United States to reduce their patent protection from the current 12 years to allow generics to enter the market sooner, while members of United States Congress have asserted they will not support the deal without a strong intellectual property rights component (Weisman, 2015).

Incidentally, the timing of these trade negotiations coincided with another controversial case involving the pharmaceutical industry. In September, the American pharmaceutical company Turing Pharmaceuticals made headlines when they purchased the rights to the drug Daraprim—a drug developed 62 years ago that treats toxoplasmosis—and increased the price from $13.50 a pill to $750 a pill (Pollack, 2015). The increase in price was not due to increased manufacturing costs of the drug, but due to the desire for an increased profit margin on part of Turing Pharmaceuticals. Unfortunately, this case is not isolated, but only one of many in a series of similarly inexplicable price-hikes enacted by drug companies.

How did the precedent set by the successful price reduction in HAART due to generic manufacturing during the early 2000s fail to translate to other life-saving medications? Aside from cases of “public health emergencies,” the pharmaceutical industry has near complete control over the production and pricing of many crucial medicines. Advocates of the pharmaceutical industry argue that a system based on profit-motive supports industry innovation and the production of better, more effective drugs. And yet, how effective can a medicine really be when it is out of reach of those who it would help the most? The efficacy of a medicine should not be measured simply by its biomedical utility, but also by its accessibility. If a pharmaceutical treatment is not available to a population for social reasons, it cannot be available to treat or cure on a biological level—bringing into question how exactly pharmaceutical companies should approach creating “effective” medicines.

Sources:

Farmer, A. Kleinman, J. Kim and M. Basilico, eds. 2013. Reimagining Global Health: An Introduction. Berkeley: University of California Press.

King, N. 2002. Security, Disease, Commerce: Ideologies of Postcolonial Global Health. Social Studies of Science 32(5-6): 763-789.

Weisman, J. (2015, July 30). Patent Protection for Drugs Puts Pressure on U.S. in Trade Talks. New York Times. Retrieved October 20, 2015, from http://www.nytimes.com/2015/07/31/business/international/pacific-trade-deal-drugs-patent-protection.html

Pollack, A. (2015, September 20). Drug Goes From $13.50 a Tablet to $750, Overnight. New York Times. Retrieved October 20, 2015, from http://www.nytimes.com/2015/09/21/business/a-huge-overnight-increase-in-a-drugs-price-raises-protests.html

Discussion Questions:

• How much control should the pharmaceutical industry have on setting prices for life-saving treatments? If their control should be limited, which governing body should have the power to decide pharmaceutical pricing?

• How likely is it that another massive activist movement, such as the movement for access to ART for HIV/AIDS treatment, will be able to drastically change the accessibility and affordability of important medicines?

• Turing Pharmaceuticals argued that their price increase of Daraprim was justified because the drug is not commonly used anymore, and the increased profits generated from this price-hike will allow the company to expand research and development into other more effective drugs to treat toxoplasmosis. Do you agree with this justification? Why or why not?