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Smith and Whiteside Journal of the International AIDS Society 2010, 13:47
http://www.jiasociety.org/content/13/1/47




 DEBATE                                                                                                                                        Open Access

The history of AIDS exceptionalism
Julia H Smith1,2*†, Alan Whiteside1†


  Abstract
  In the history of public health, HIV/AIDS is unique; it has widespread and long-lasting demographic, social, eco-
  nomic and political impacts. The global response has been unprecedented. AIDS exceptionalism - the idea that the
  disease requires a response above and beyond “normal” health interventions - began as a Western response to the
  originally terrifying and lethal nature of the virus. More recently, AIDS exceptionalism came to refer to the disease-
  specific global response and the resources dedicated to addressing the epidemic. There has been a backlash
  against this exceptionalism, with critics claiming that HIV/AIDS receives a disproportionate amount of international
  aid and health funding.
  This paper situations this debate in historical perspective. By reviewing histories of the disease, policy develop-
  ments and funding patterns, it charts how the meaning of AIDS exceptionalism has shifted over three decades. It
  argues that while the connotation of the term has changed, the epidemic has maintained its course, and therefore
  some of the justifications for exceptionalism remain.


Background                                                                           social, economic and political impacts. HIV/AIDS is a
In the 30 years since it was first recognized, HIV has                               long-wave event: an epidemic that, where it is most pre-
spread globally. An estimated 25 million people have                                 valent, will have consequences that will be felt for gen-
died, and about 33 million people are currently living                               erations [2]. Just as the epidemic is distinctive, so has
with HIV/AIDS. The epidemic is not homogenous; the                                   been the response, though for opposite reasons. Despite
global picture is diverse. In wealthy countries, most of                             the progression of the epidemic, the HIV/AIDS response
Latin America, Asia, north Africa and the Middle East,                               has been characterized by both lack of action and fev-
infections are concentrated in particular geographical                               ered aid at different points in time. This disease-specific
locations and among specific population groups. These                                response has become known as AIDS exceptionalism.
are often socially and politically marginalized popula-                              The word, “exceptionalism”, means to treat or to give
tions, including injecting drug users, men who have sex                              something the status of being exceptional, and can be
with men, and commercial sex workers.                                                positive or negative.
  Generalized epidemics are found in eastern, central                                   AIDS exceptionalism began as a Western response to
and southern Africa, where between 5% and 30% of                                     the originally terrifying and lethal nature of the virus,
adults are infected. However, even here, specific groups,                            which disproportionately affected specific groups. The
such as women, remain disproportionately at risk. The                                first activists argued that HIV/AIDS required an excep-
development of HIV “risk environments” [1] has been                                  tional response in order to protect the rights of those
shaped by social-structural, economic and political fac-                             infected, to generate resources to assist them and to
tors specific to each context, and indicated by differing                            curb a then mysterious epidemic. More recently, AIDS
prevalence rates.                                                                    exceptionalism came to refer to the disease-specific glo-
  In the history of public health, HIV/AIDS is unique in                             bal response. This international response was unprece-
terms of how it is spread and attacks the body and                                   dented, as the commitment of resources exceeded any
because of its widespread and long-lasting demographic,                              other health cause.
                                                                                        International organizations, such as the Joint United
                                                                                     Nations Programme on HIV/AIDS (UNAIDS), the Glo-
* Correspondence: smith.julia.h@gmail.com
† Contributed equally                                                                bal Fund to Fight AIDS, Tuberculosis and Malaria (the
1
 Peace Studies Department, University of Bradford, Bradford, West Yorkshire,         Global Fund) and the US President’s Emergency Plan
UK                                                                                   for AIDS Relief (PEPFAR), were formed to specifically
Full list of author information is available at the end of the article

                                        © 2010 Smith and Whiteside; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
                                        Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
                                        reproduction in any medium, provided the original work is properly cited.
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address HIV/AIDS. In the past few years, there has been                        health tradition, was all the more crucial, since the
a backlash against this exceptionalism, with critics                           people with increased risk – gay and bisexual men,
claiming that HIV/AIDS receives a disproportionate                             drug users, and their sexual partners – were already
amount of international aid and health funding, and that                       socially vulnerable ... Policies and practices that
this has implications for other health issues.                                 appeared to threaten such persons could only drive the
  This paper reviews the histories of the disease, policy                      epidemic underground and make it more difficult to
developments and funding patterns to chart how the                             work with the populations within which HIV was
meaning of AIDS exceptionalism has shifted over three                          spreading [7].
decades. It argues that, while the connotation of the
term has changed, the epidemic has maintained its                             Recognizing the unique needs of populations at risk of
course, and therefore some of the justifications for                        HIV infection, an exceptionalist alliance, including the
exceptionalism remain.                                                      gay community, liberal and left-wing parties, and the
                                                                            healthcare and psychosocial professions, was formed to
Discussion                                                                  advocate for a unique response. Bayer writes, “The
The rise of exceptionalism in the West                                      embrace of exceptionalism must be understood in broad
In the early 1980s, when previously healthy, mostly                         political terms, as representing in large measure, a singu-
homosexual young men began dying, the unknown                               lar victory on the part of gay men, their community-
cause and rising numbers of deaths combined with                            based organisations and their allies” [8]. The alliance pro-
homophobia to generate a response of blame and fear.                        moted the empowerment of those groups most at risk,
Extreme religious right-wing advocates spoke of divine                      and the assurance that their rights would be protected.
punishment for “sinful” lifestyles [3]. The disease was                       During the 1980s, public health adopted a human
initially termed the gay-related immunodeficiency dis-                      rights framework that took societal-based vulnerability
ease (GRID), or “the gay plague” [4]. Homosexual men                        into consideration and increasingly became involved in
were openly discriminated against when they tried to                        societal transformation efforts [5]. HIV/AIDS was posi-
access health services.                                                     tioned as not only a health condition, but also as a
   As haemophiliacs, women and children in the West                         social issue that required a political, as well as a medical,
increasingly presented with the same symptoms, it                           response [4]. The scientific establishment’s control on
became clear that the cause of illness was not related to                   public health was challenged, and a new type of public
sexual orientation. In 1983, the human immunodefi-                          health initiative was called for: one that provided coun-
ciency virus (HIV) was identified as the cause of AIDS.                     selling, protected privacy, and empowered the patient.
The realization that HIV could spread to the general                        Lazzarini summarizes:
public, and that it was linked to the life-giving and plea-
surable acts of sexual intercourse, resulted in increased                      Descriptively, exceptionalism posited that in the
hysteria. Governments, the media and scientists sought                         early years of the HIV epidemic, HIV was considered
a quick response: “A sense of urgency defined the pro-                         so different, so “exceptional” in comparison to other
blem, and the public information materials developed in                        communicable diseases that advocates and public
this period often emphasized danger at the expense of                          health officials agreed that HIV policy should cater
clear information about prevention measures” [5]. Even                         to the uniqueness of the epidemic rather than treat
as information about modes of transmission (unpro-                             it like all other communicable diseases. Supposedly,
tected sexual intercourse, injecting drug use, and from                        the argument goes, public fear was so great, the poli-
mother to infant) became more accurate, the original                           tical power of gay men so substantial, and concern
fear and stigma prevailed.                                                     over stigmatization so real, that public health autho-
   The gay rights movement, building on the momentum                           rities abandoned “traditional” approaches to commu-
it had gained in the preceding decades, began campaign-                        nicable disease control in favor of a civil liberties
ing for HIV/AIDS to be viewed as a human rights issue.                         approach [9].
Advocates argued that infection was not the only risk; if
found positive, individuals also faced harmful discrimi-                      This public health approach helped contain the epi-
nation [6]. In this, they were supported by public health                   demic among those groups most at risk, and meet, to
officials, who feared that stigma would prevent those at                    varying degrees, their specific needs. New infections in
risk from getting tested, and those infected from acces-                    the United States fell from approximately 130,000 in
sing health services:                                                       1984 to about 60,000 in 1991 [10]. The feared general
                                                                            epidemic never occurred in the West.
    Avoiding compulsory measures such as isolation and                        The hysteria surrounding HIV/AIDS faded; the media
    quarantine, which were so much a part of the public                     and public policy lost interest. The human rights
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approach that had previously been revolutionary was                           The Global Programme on AIDS in the World Health
integrated into existing public health traditions that                      Organization (WHO) lacked both the funding and capa-
included education, technical solutions and regular test-                   city to respond to the epidemic. Outside of WHO, HIV/
ing. In 1991, Bayer wrote, “As AIDS has become less                         AIDS was not on the agenda of other United Nations
threatening, the claims of those who argued that the                        (UN) agencies. International responses between 1986
exceptional threat would require exceptional policies                       and 1996 were characterized by denial, underestimation
have begun to lose their force” [11]. Highly affected                       and over-simplification [17]. AIDS exceptionalism was
communities continued to advocate for the rights of                         originally a Western-focused phenomenon that advo-
people living with HIV and AIDS (PLHIV) and against                         cated for the rights of those most affected and became a
stigma, but much of the sense of urgency among the                          decreasing public force as effective treatment was rolled
general public was lost.                                                    out in North America and Europe.
  When antiretroviral treatment (ART) was unveiled at
the 1996 International AIDS Conference in Vancouver,                        International exceptionalism
Canada, AIDS was transformed into a treatable disease.                      In 1996, UNAIDS was formed as a joint programme of
The advent of treatment shifted Western priorities of                       UN agencies engaged in the AIDS response [17]. In
response: “The availability of more advanced antiretro-                     1998, it published its first set of comprehensive data on
viral therapies has made it possible to treat effectively                   HIV/AIDS, demonstrating the global scale of the epi-
those with HIV infection, thereby increasing the impor-                     demic, and increasing awareness about the generalized
tance of early identification and tracking. These develop-                  epidemic in parts of sub-Saharan Africa. Such data pro-
ments establish a strong case for moving beyond HIV                         vided an information arsenal for those advocating for
exceptionalism and treating HIV antibody tests like                         increased resources for HIV/AIDS in mid- and high-pre-
other blood tests” [12].                                                    valence developing countries [17]. UNAIDS, adopting
  As technical solutions of testing and treatment gained                    public health rhetoric from the early AIDS response in
priority, the social movement that had spurred the early                    the West, stressed the need for comprehensive
HIV/AIDS response continued to fade from public                             responses that reached beyond a medical approach, and
awareness. This shift was assisted by a rapid fall in the                   began advocating for increased funding for AIDS pro-
price of the drugs. Had they remained expensive, AIDS                       grammes [18]. During the same period, donor countries
exceptionalism would have been perpetuated. As Casar-                       began to scale up international aid contributions. Gen-
att and Lantos noted, “Medical therapy has become                           eral overseas development assistance increased from US
more effective but also prohibitively expensive. A medi-                    $53.6 billion in 2000 to US$61.1 billion in 2003 [19].
cal tragedy has been transformed into a financial crisis                    This aid was targeted towards issues perceived as “glo-
and society has responded by establishing special pro-                      bal”, such as poverty, debt relief and communicable
grams and sources of funding for AIDS. These man-                           diseases.
oeuvres parallel earlier approaches to HIV testing and                        HIV/AIDS gained prominence among these issues
reporting that have collectively come to be known as                        through the language of securitization and globalization.
exceptionalism” [13]. The mobilization of resources to                      In 2000, US Vice President Al Gore said, “It [HIV]
make treatment available in the West altered HIV/AIDS                       threatens not just individual citizens, but the very
from a lethal disease to a manageable chronic illness. By                   institutions that define and defend the character of a
2000, AIDS exceptionalism, as it had originally been                        society ... It strikes at the military, and subverts the
conceived, was over.                                                        forces of order and peacekeeping” [20]. The US National
  Throughout the rise and fall of Western AIDS excep-                       Intelligence Council then produced The Global Infec-
tionalism, the growing global epidemic remained largely                     tious Disease Threat and Its Implications for the United
ignored by the international community [14]. During                         States [21]. Six months later, the UN Security Council
the 1980s, reports from Africa of similar diseases and                      passed Resolution 1308, stating, “The HIV/AIDS pan-
symptoms were ignored [15]. There were few attempts,                        demic, if unchecked, may pose a risk to stability and
and even resistance, to linking HIV/AIDS to “slim dis-                      security” [22]. In 2001, UN Secretary General Kofi
ease”, as it was called in central Africa [14]. When the                    Annan called for a “war chest” of $7-10 billion to
African AIDS epidemic was finally recognized, in the                        address the global HIV/AIDS crisis [23].
late 1980s, little international attention or resources                       The Pretoria-based Institute for Security Studies
were forthcoming. In 1990 and 1991, only 6% of the                          wrote, “The severe social and economic impact of HIV/
total global spending for HIV prevention went to the                        AIDS, and the infiltration of the epidemic into the rul-
developing world [16]. For international organizations,                     ing political and military elites and middle classes of
after the first fears of a Western rampant unstoppable                      developing countries may intensify the struggle for poli-
epidemic were allayed, HIV/AIDS was not a priority.                         tical power to control scarce state resources. Such
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dynamics, even singularly, have the potential to lead to                    manufacture cheaper generic medications. Activists in
political instability” [24].                                                the United States, largely led by the PLHIV organization,
  It was argued that HIV/AIDS could hinder processes                        ActUp, began a sustained campaign against the US gov-
of democratization by undermining social development                        ernment’s support for pharmaceutical companies’ patent
and intensifying the struggle for resources. It was further                 legislation [26].
suggested that AIDS orphans could contribute to social                        Arguments that ART could not be provided in the
unrest as they made likely recruits for terror and rebel                    developing world due to limited capacity and poverty
groups: “Bluntly put, those who are orphaned may be                         were challenged by the successful implementation of
indifferent to prevailing norms and values, may look for                    such programmes by health organizations like Médecins
salvation to millenarian and fundamentalist beliefs of                      Sans Frontières [27]. Researchers found that people liv-
one kind or another, and may ultimately do this with                        ing in poverty adhered to medication regimes just as
assistance from a Kalashnikov or a bomb” [2].                               consistently, if not more so, as those living in the devel-
  While there was little evidence to actually link HIV/                     oped world. Economists argued that the benefits of ART
AIDS prevalence and security issues [25], the discourse                     (keeping populations healthy for longer) outweighed the
of global threats drew international attention to the epi-                  costs of treatment [28], adding further fuel to the
demic. Barnett and Prins write, “The combination of                         human rights argument.
AIDS, orphans and terror begins to take on an indepen-                        In 2002, Botswana implemented the first universal
dent life, perhaps regardless of either the strength of the                 access programmes in sub-Sahara Africa. In 2003, the
evidence or the precise value of the parallel” [25]. HIV                    South African Government gave in to local and interna-
was seen as a virus that could have widespread reper-                       tional pressure and announced its public treatment pro-
cussions for the most affluent and powerful, even                           gramme. The World Health Organization launched the
though risk of infection and disease spread in these                        “3 × 5” campaign, aiming to place 3 million people on
populations had abated. The epidemic was positioned as                      treatment by 2005. In 2006, 111 countries committed to
a homogenous issue with impacts for both the devel-                         achieving universal access to prevention, treatment, care
oped and developing world.                                                  and support by 2010 [29].
  However, as policy and activists spoke of a global                          The development of international AIDS programmes
HIV/AIDS epidemic, it became apparent that, like many                       combined with a favourable political environment to cre-
diseases that are expensive to treat, how this epidemic                     ate a new discourse of AIDS exceptionalism. At the 2001
was experienced differed drastically by region. ART,                        UN General Assembly Special Session on AIDS, 189
available from 1996, proved effective in curbing AIDS                       nations agreed that HIV/AIDS was a national and inter-
deaths in those regions that could afford the high costs                    national development issue of the highest priority [30].
of medications (originally more than $25,000 per patient                    This translated into increased international funding for
per year). In those countries with mid to high HIV/                         HIV/AIDS programmes. In 2002, the Global Fund to
AIDS prevalence, ART remained unaffordable, even                            Fight AIDS, Tuberculosis and Malaria was established. In
while costs dropped to about $10,000 per patient per                        2003, US President George W Bush pledged $15 billion
year by 2000 and to less than $100 by 2010. A mid to                        toward PEPFAR. In 2004, Kofi Annan prioritized HIV/
high disease burden combined with lack of health                            AIDS, stating, “AIDS is a new type of global emergency–
resources in much of the developing world, making the                       an unprecedented threat to human development” [30].
benefits of ART beyond the reach of most domestic                             In 2004, at the Copenhagen Consensus, a policy think
health budgets. While AIDS had become a chronic dis-                        tank in Denmark, a panel of eight prominent economists
ease in the West, in most of the developing world. it                       ranked controlling HIV/AIDS as the number one eco-
was still a death sentence.                                                 nomic priority in terms of a cost-benefit analysis in
  What made this discrepancy unique was the interna-                        health and nutrition [14]. UNAIDS Executive Director
tional mobilization that occurred around it, positioning                    Peter Poit encapsulated the exceptionalist point of view,
the inequity of treatment access for people living with                     saying, “This pandemic is exceptional because there is
HIV and AIDS (PLHIV) as an international human                              no plateau in sight, exceptional because of the severity
rights cause. The International AIDS Conference in                          and longevity of its impact, and exceptional because of
Durban in 2000 called for treatment to be rolled out in                     the special challenges it poses to effective public action”
the developing world and for prices of ART be cut.                          [31]. The world had realized the size and impact of the
Activists in South Africa demanded that their govern-                       AIDS epidemic, and was treating it as an emergency.
ment provide universal access to ART, despite political
resistance and denial. The governments of India and                         The end of AIDS exceptionalism?
Brazil took on the World Trade Organization, arguing                        Arguments against exceptionalism began to gain atten-
for compulsory licensing that would enable them to                          tion in 2007. The amount of funding allocated to HIV/
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AIDS was called into question, as were the types of                         UN agencies more power than they had to address the
programmes being implemented. Three important books                         epidemic [37]. Research and policy looked to justify the
put forward new arguments. Chin and Pisani focused on                       role of HIV/AIDS programmes within broader health
the Asian experience, suggesting that scientists,                           and development frameworks. Yu et al argued that
UNAIDS and AIDS activists accept certain myths about                        HIV/AIDS funding actually increased access to other
HIV epidemiology to maintain the political profile of                       health resources in many underserved areas [38]. A
AIDS, and their own jobs [32]. Pisani spoke of resources                    2007 report by the Institute of Medicine, charged with
for HIV/AIDS programmes disappearing down an “ideo-                         monitoring PEPFAR, suggested that the vertical HIV/
logical drain” [33]. They suggested the epidemic was                        AIDS programme could contribute to improving overall
overstated, and money and resources were being                              health outcomes [39]. These debates have been engaged
deployed in situations where HIV would not spread any-                      with in more detail elsewhere [40]; here, they indicate
way. Epstein’s The Invisible Cure focused on the African                    that the exceptionalism that was attributed to HIV/
epidemic, suggesting that one of the main drivers of the                    AIDS as a global issue was called into question and,
epidemic in hyper-epidemic countries was concurrent                         occasionally, outright attacked.
sexual partnering, but that such sensitive social issues                      The emergence of the most recent exceptionalism
had not been openly or adequately addressed, despite                        debate is concurrent to a shift in donor country spend-
the resources mobilized for curbing the epidemic [34].                      ing and priorities. Some donor countries have begun
   The strongest argument against AIDS exceptionalism                       redirecting HIV/AIDS funding; in 2009, the UK Depart-
has centred on the claim that responses undermined                          ment for International Development reassigned a por-
health systems in developing countries. In a series of                      tion of its AIDS funds to maternal and child mortality
opinion pieces in the British Medical Journal, Roger                        programmes and health system strengthening [41].
England argued that HIV/AIDS was not the “global cat-                       Médecins Sans Frontières reports that The Netherlands
astrophe” claimed by “AIDS exceptionalists”, and that                       cut its HIV/AIDS spending by $70 million [27].
donor aid for HIV/AIDS was disproportionate to the                            As these changes take place, proposals are emerging
contribution of HIV/AIDS to the global disease burden                       to reorganize disease-specific funds in new ways. Sachs
[35]. England asserted that it would have been more                         and Pronyk argue that the Global Fund should increase
cost effective to put the money into bed nets, immuni-                      its mandate to include health systems, maternal and
zation and dealing with childhood diseases. He accused                      child mortality and neglected tropical diseases [42].
UNAIDS of creating “the biggest vertical programme in                       Similarly, Ooms et al argue for transforming the Global
history”, which diverted human resources from the pub-                      Fund from a disease-specific fund into a “Global Health
lic sector, created additional reporting requirements and                   Fund” [43]. HIV/AIDS is being positioned as one of
poorly coordinated donor activities for governments to                      many health issues requiring global resources. The cur-
cope with, and removed national control over spending                       rent and potential impacts for HIV/AIDS programmes
priorities [36]. He wrote:                                                  resulting from changes in funding patterns have been
                                                                            well discussed [27]; here, they represent a current shift
    It is no longer heresy to point out that far too much                   away from prioritizing HIV/AIDS as a global issue.
    is spent on HIV relative to other needs and that this
    is damaging health systems. Although HIV causes                         The current AIDS epidemic and response
    3.7 percent of mortality, it receives 25 percent of                     While the debate on the global exceptionality of AIDS
    international healthcare aid and a big chunk of                         continues, HIV/AIDS will prevent many sub-Saharan
    domestic expenditure ... Until we put HIV in its                        African countries from achieving the Millennium Devel-
    place, countries will not get the delivery systems                      opment Goals (MDGs) [44]. In high-prevalence coun-
    they need [36].                                                         tries (those with more than 10% of adults infected:
                                                                            Botswana, Lesotho, Malawi, Mozambique, Namibia,
  England and others’ commentaries highlighted that                         South Africa, Swaziland, Swaziland, Zambia and Zim-
many diseases and health issues (such as malaria, under-                    babwe), AIDS is the leading cause of death [27]. The
nutrition and respiratory disorders) resulted in more                       epidemic has been found to decrease gross domestic
deaths than those related to AIDS in many parts of the                      product, create food security threats, and negatively
world, but were receiving less funding. Whether or not                      impact human resources. The consequent orphaning has
this neglect was because of the prioritization of the                       created new social costs for the state and for the house-
AIDS response or due to other factors was hotly                             hold to bear; the number of orphans due to AIDS in
contested.                                                                  sub-Saharan Africa increased from 6.5 million in 2001
  UNAIDS and WHO responded defensively, noting                              to 11.6 million in 2007 [45]. AIDS is the leading cause
that those against AIDS exceptionalism attributed the                       of death for women worldwide [46], directly impacting
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MDG three (to promote gender equality and empower                             The gap between resources required to implement
women) and goal five (to improve maternal health). The                      HIV/AIDS programmes and those available has contin-
direct link between HIV/AIDS and development in                             ued to grow over the past three years [49]. In 2009,
Africa remains.                                                             UNAIDS and WHO predicted that the $25.1 million
   The number of new HIV infections each year remains                       needed for HIV/AIDS programmes in 2010 would not
unacceptably high, and models of effective prevention                       be forthcoming [49]. The total amount of Global Fund
programmes are few and far between. In the endemic                          grants recommended for funding in 2009 was 35% lower
countries, mass behaviour-change campaigns, such as                         than in 2008 [27]. In 2010, US President Barrack Obama
the ABC (Abstain, Be Faithful and Use Condoms) strat-                       increased funding to PEPFAR only minimally, allocating
egy, have failed to achieve their intended impacts. Advo-                   less to the Global Fund than in previous years, and
cates are stressing the need to address the systemic                        causing HIV/AIDS groups to express concern that the
contributors to risk and vulnerability.                                     amount allocated would not be enough to reach the tar-
   In South Africa, where one of the largest epidemics                      geted number of PLHIV in need of treatment [50].
continues to unfold, Venter writes that prevention                            De Waal writes, “Normalization in the sense of adjust-
efforts are failing: “500 000 South Africans are infected                   ing reality to take account of the miseries of AIDS can
each year, and there is no sign that this is letting up. In                 be found in many places, when it is looked for. Even the
8 to 10 years’ time, as they enter the AIDS stage, these                    statistics become numbing, and when lower-than-
500 000 South Africans will need ARVs, and this will                        expected HIV prevalence is reported, as recently in
continue forever until a prevention strategy that works                     Kenya and Zimbabwe, it can give the impression that
is implemented” [47].                                                       things are ‘not so bad’ - when 7 to 10 percent of an
   In Western countries, though the epidemic is concen-                     adult population is living with HIV” [3]. While it may
trated in specific population groups, infection rates                       be that international opinion has become numbed by
among these groups are stable (but not declining). El-                      the persistence of the AIDS epidemic, it remains, to
Sadre et al write from the American perspective:                            varying degrees in different regions, a prevalent and last-
                                                                            ing feature of the global health landscape.
    For the past decade, however, progress has been
    stalled. It had been anticipated that effective antire-                 Conclusions
    troviral therapy, with its suppressive effect on viral                  The concept of AIDS exceptionalism developed as a
    replication, would reduce the overall rate of new                       Western response to an epidemic that threatened the
    infections, but this expectation has not been realized.                 lives and rights of specific populations in the developed
    More than half a million Americans became infected                      world. As that epidemic was contained and effective
    with HIV in the past decade, including about 56,000                     treatment became available, the case for exceptionalism
    in the past year [10].                                                  shifted to the international stage, where resources and
                                                                            organizations were mobilized to respond to the extreme
  The authors advocate for interventions that “address                      need in developing countries. As a result, the numbers
the socioeconomic milieu in which HIV transmission                          of PLHIV on treatment has increased each year. Infec-
occurs” [10]. The social-political and human rights                         tion rates in much of the world have stabilized.
approaches that originally motivated for an exceptional                        These gains have been accompanied by criticisms of
response remain relevant to prevention, but are over-                       the type and size of response. It is argued that the HIV/
shadowed by technical solutions, such as testing and                        AIDS response has done harm, as well as good, particu-
treatment.                                                                  larly by creating vertical programmes for a single dis-
  Meanwhile, more than half of those in need still do                       ease, which may have diverted resources. As donor
not have access to treatment, and treatment is posing                       countries shift priorities, and in the context of the eco-
new challenges for sustainable funding. Most countries                      nomic recession, the urgency around the HIV/AIDS
with mid to high prevalence cannot afford the cost of                       response is once again declining.
treatment without international aid; as aid is reduced or                      This shift in policy and international priorities does
cancelled, treatment programmes are threatened, drug                        not change the reality of an epidemic that, after three
resistance develops and large numbers of PLHIV die. In                      decades, is still unfolding. In southern Africa, the demo-
countries like Uganda, patients are being turned away                       graphic effects of the generalized epidemic will shape
from treatment clinics due to lack of resources; 300,000                    societies for generations. In other parts of the world,
Ugandans in need of treatment are denied their right to                     HIV/AIDS continues to mark inequalities: one in 40
health [48]. These numbers will continue to grow if                         blacks, one in 10 men who have sex with men, and one
both effective prevention and sustainably funded treat-                     in eight injection drug users in New York City are HIV
ment programmes are not forthcoming.                                        positive [10].
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  Both the human rights approach, originally adopted by                           10. El-Sadre W, Mayer K, Hodder S: AIDS in America – Forgotten but Not
                                                                                      Gone. New England Journal of Medicine 2010, 362:967.
the HIV/AIDS response, and the more recent demands                                11. Bayer R: Sounding Board: Public Health Policy and the AIDS Epidemic:
for universal access to treatment, remain relevant to the                             An End to HIV Exceptionalism? New England Journal of Medicine 1991,
33 million people living with HIV/AIDS and to their                                   324:1500-1505.
                                                                                  12. Jansen LA: HIV Exceptionalism, CD4+ cell Testing, and Conscienscious
communities; these issues should also remain pertinent                                Subversion. Journal of Medical Ethics 2005, 31:322-326.
within global health policy. Meanwhile new challenges                             13. Casarett D, Lantos J: Have We Treated AIDS Too Well? Rationing and the
are developing, not the least of which is the need to suc-                            Future of AIDS Exceptionalism. Ann Intern Med 1998, 128:756-759.
                                                                                  14. Behrman G: The Invisible People: How the U.S. Has Slept Through the Global
cessfully integrate the HIV/AIDS response within                                      AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time New
broader public health responses to the benefit of all. As                             York: Simon and Schuster; 2004.
Sachs notes in a commentary in The Lancet, “We are                                15. Hooper E: Slim London: Bodley Head; 1990.
                                                                                  16. In AIDS in the World. Edited by: Mann J, Trantola D, Netter T. Cambridge:
not overspending on AIDS but underspending on the                                     Harvard University Press; 1992:.
rest ... The choice is not between AIDS, health systems,                          17. Knight L: UNAIDS the First 10 Years UNAIDS: Geneva; 2008.
and other Millennium Development Goals. We can and                                18. Levine R, Woods N, Kuczynski D, Sridhar D: Report of the UNAIDS
                                                                                      Leadership Transition Working Group. UNAIDS Preparing for the Future
must support them all” [42].                                                          Washington DC: Centre for Global Development; 2009.
  As how to best approach such challenges is debated,                             19. Poku N, Whiteside A: 25 Years of Living with HIV/AIDS: Challenges and
we must not lose sight of the approximate 2 million                                   Prospects. International Affairs 2006, 82:254-255.
                                                                                  20. Gore A: Remarks as Prepared for Delivery by Vice President Al Gore for the U.N.
AIDS-related deaths that occur each year. Defining                                    Security Council Session on AIDS in Africa Washington DC; 2000.
these deaths as either exceptional or unexceptional                               21. US National Intelligence Council: The Global Infectious Disease Threat and Its
seems both callous and arbitrary.                                                     Implications for the United States Washington DC; 2000.
                                                                                  22. UN Security Council: Statement on HIV/AIDS Geneva; 2000.
                                                                                  23. Annan K: The Secretary-General Address To The African Summit On HIV/AIDS,
                                                                                      Tuberculosis And Other Infectious Diseases Abuja; 2001.
Acknowledgements
                                                                                  24. Pharaoh R, Schonteich M: AIDS, Security, and Governance in Southern
Some of the ideas developed for this article came from work done by Alan
                                                                                      Africa: Exploring the Impact. Occasional Paper no. 65 Pretoria: Institute for
Whiteside for the aids2031 project. This article was supported through the
                                                                                      Security Studies; 2003.
ABBA Research Partner’s Consortium supported by the UK Department for
                                                                                  25. Barnett T, Prins G: HIV/AIDS and security: fact, fiction and evidence–a
International Development (DfID). The views expressed are not necessarily
                                                                                      report to UNAIDS. International Affairs 2006, 82:359-368.
those of DfID or aids2031.
                                                                                  26. Engel J: The Epidemic: a global history of AIDS New York: Harper Collins;
                                                                                      2006.
Author details
1                                                                                 27. MSF: HIV/AIDS treatment in developing countries: The battle for long-term
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                                                                                      survival has just begun Geneva: Médicins Sans Frontières; 2009.
UK. 2Health Economics and HIV/AIDS Research Division, University of
                                                                                  28. Nattrass N: The (political) economics of antiretroviral treatment in
KwaZulu-Natal, Westville Campus, Durban, South Africa.
                                                                                      developing countries. Trends in Microbiology 2006, 16(12):574.
                                                                                  29. UNAIDS: Measuring progress towards universal access Geneva: UNAIDS;
Authors’ contributions
                                                                                      2009.
Both authors contributed to the research and writing of this paper, and read
                                                                                  30. UNAIDS: Report on the Global AIDS Epidemic Geneva: UNAIDS; 2006.
and approved the final manuscript.
                                                                                  31. Piot P: Epidemic Update Speech Geneva: UNAIDS; 2005.
                                                                                  32. Chin J: The AIDS Pandemic Oxford: Radcliffe; 2006.
Competing interests
                                                                                  33. Pisani E: The Wisdom of Whores: Bureaucrats, Brothels and the Business of
The authors declare that they have no competing interests.
                                                                                      AIDS London: Granta; 2008.
                                                                                  34. Epstein H: The Invisible Cure: Africa, the West, and the Fight against AIDS New
Received: 14 July 2010 Accepted: 3 December 2010
                                                                                      York: Farrar; 2007.
Published: 3 December 2010
                                                                                  35. England R: The dangers of disease specific aid programmes. British
                                                                                      Medical Journal 2007, 335:565.
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1. Rhodes T, Singer M, Bourgois P, Friedman A, Strathdee S: The social                336:1072.
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    Science and Medicine 2005, 5:1026.                                                Nature 2007, 448:251.
2. Barnett T, Whiteside A: AIDS in 21st Century: Disease and Globalization        38. Yu D, Souteyrand Y, Banda M, Kaufman J, Perriëns J: Investing in HIV/AIDS
    London: Palgrave McMillan; 2006.                                                  programs: Does it help strengthen health systems in developing
3. De Waal A: AIDS and Power: Why there is no political crisis - yet New York:        countries? Global Health 2008, 8.
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4. Fee E, Krieger N: Understanding AIDS: Historical Interpretations and the           Implementation: Progress and Promise Washington, DC: National Academies
    Limits of Biomedical Individualism. American Journal of Public Health 1993,       Press; 2007.
    83:1477-1486.                                                                 40. Whiteside A, Smith J: Exceptional epidemics: AIDS still deserves a global
5. Mann J, Tarantola D: Responding To HIV/AIDS: A Historical Perspective.             response. Globalization and Health 2009, 5.
    Health and Human Rights 1998, 2:5-8.                                          41. PlusNews: Global AIDS funding at “dangerous turning point”. 2009
6. Bayer R, Fairchild AL: Changing the Paradigm for HIV Testing – The End             [http://www.plusnews.org/Report.aspx?ReportId=8690].
    of Exceptionalism. New England Medical Journal 2006, 335:647-649.             42. Sachs J, Pronyk P: Commentary. Lancet 2009, 373:2111.
7. Rosenbrock R, Dubois-Arber F, Moers M, Pinell P, Schaeffer D, Setbon M:        43. Ooms G, Van Damme W, Baker B, Zeitz P, Schrecker T: The diagonal
    The Normalization of AIDS in Western European Countries. Social Science           approach to Global Fund financing: A cure for the broader malaise of
    and Medicine 2000, 50:1607-1629.                                                  health systems? Globalization and Health 2008, 4:6-12.
8. Bayer R: HIV Exceptionalism Revisited. AIDS & Public Policy Journal 1994,      44. Hecht R, Alban A, Taylor K, Post S, Andersen NB: Putting It Together: AIDS
    3:16.                                                                             and the Millennium Development Goals. PLoS Med 2006, 3:e455.
9. Lazzarini Z: What lessons can we learn from the exceptionalism debate          45. UNAIDS: AIDS epidemic update Geneva: UNAIDS; 2008.
    (finally)? Journal of Medicine and Ethics 2001, 29:149.
Smith and Whiteside Journal of the International AIDS Society 2010, 13:47                                                                    Page 8 of 8
http://www.jiasociety.org/content/13/1/47




46. WHO: Women and Health: Today’s Evidence/Tomorrow’s Agenda Geneva:
    World Health Organisation; 2009.
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    South African Medical Journal 2006, 96:299.
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49. UNAIDS: What Countries Need: Investments for 2010 targets? Geneva:
    UNAIDS; 2009.
50. Mckay B: White House Proposes 9% Increase in Global-Health Funding.
    Wall Street Journal 2010.

 doi:10.1186/1758-2652-13-47
 Cite this article as: Smith and Whiteside: The history of AIDS
 exceptionalism. Journal of the International AIDS Society 2010 13:47.




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The history of aids exceptionalism 1758 2652-13-47

  • 1. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 http://www.jiasociety.org/content/13/1/47 DEBATE Open Access The history of AIDS exceptionalism Julia H Smith1,2*†, Alan Whiteside1† Abstract In the history of public health, HIV/AIDS is unique; it has widespread and long-lasting demographic, social, eco- nomic and political impacts. The global response has been unprecedented. AIDS exceptionalism - the idea that the disease requires a response above and beyond “normal” health interventions - began as a Western response to the originally terrifying and lethal nature of the virus. More recently, AIDS exceptionalism came to refer to the disease- specific global response and the resources dedicated to addressing the epidemic. There has been a backlash against this exceptionalism, with critics claiming that HIV/AIDS receives a disproportionate amount of international aid and health funding. This paper situations this debate in historical perspective. By reviewing histories of the disease, policy develop- ments and funding patterns, it charts how the meaning of AIDS exceptionalism has shifted over three decades. It argues that while the connotation of the term has changed, the epidemic has maintained its course, and therefore some of the justifications for exceptionalism remain. Background social, economic and political impacts. HIV/AIDS is a In the 30 years since it was first recognized, HIV has long-wave event: an epidemic that, where it is most pre- spread globally. An estimated 25 million people have valent, will have consequences that will be felt for gen- died, and about 33 million people are currently living erations [2]. Just as the epidemic is distinctive, so has with HIV/AIDS. The epidemic is not homogenous; the been the response, though for opposite reasons. Despite global picture is diverse. In wealthy countries, most of the progression of the epidemic, the HIV/AIDS response Latin America, Asia, north Africa and the Middle East, has been characterized by both lack of action and fev- infections are concentrated in particular geographical ered aid at different points in time. This disease-specific locations and among specific population groups. These response has become known as AIDS exceptionalism. are often socially and politically marginalized popula- The word, “exceptionalism”, means to treat or to give tions, including injecting drug users, men who have sex something the status of being exceptional, and can be with men, and commercial sex workers. positive or negative. Generalized epidemics are found in eastern, central AIDS exceptionalism began as a Western response to and southern Africa, where between 5% and 30% of the originally terrifying and lethal nature of the virus, adults are infected. However, even here, specific groups, which disproportionately affected specific groups. The such as women, remain disproportionately at risk. The first activists argued that HIV/AIDS required an excep- development of HIV “risk environments” [1] has been tional response in order to protect the rights of those shaped by social-structural, economic and political fac- infected, to generate resources to assist them and to tors specific to each context, and indicated by differing curb a then mysterious epidemic. More recently, AIDS prevalence rates. exceptionalism came to refer to the disease-specific glo- In the history of public health, HIV/AIDS is unique in bal response. This international response was unprece- terms of how it is spread and attacks the body and dented, as the commitment of resources exceeded any because of its widespread and long-lasting demographic, other health cause. International organizations, such as the Joint United Nations Programme on HIV/AIDS (UNAIDS), the Glo- * Correspondence: smith.julia.h@gmail.com † Contributed equally bal Fund to Fight AIDS, Tuberculosis and Malaria (the 1 Peace Studies Department, University of Bradford, Bradford, West Yorkshire, Global Fund) and the US President’s Emergency Plan UK for AIDS Relief (PEPFAR), were formed to specifically Full list of author information is available at the end of the article © 2010 Smith and Whiteside; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
  • 2. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 2 of 8 http://www.jiasociety.org/content/13/1/47 address HIV/AIDS. In the past few years, there has been health tradition, was all the more crucial, since the a backlash against this exceptionalism, with critics people with increased risk – gay and bisexual men, claiming that HIV/AIDS receives a disproportionate drug users, and their sexual partners – were already amount of international aid and health funding, and that socially vulnerable ... Policies and practices that this has implications for other health issues. appeared to threaten such persons could only drive the This paper reviews the histories of the disease, policy epidemic underground and make it more difficult to developments and funding patterns to chart how the work with the populations within which HIV was meaning of AIDS exceptionalism has shifted over three spreading [7]. decades. It argues that, while the connotation of the term has changed, the epidemic has maintained its Recognizing the unique needs of populations at risk of course, and therefore some of the justifications for HIV infection, an exceptionalist alliance, including the exceptionalism remain. gay community, liberal and left-wing parties, and the healthcare and psychosocial professions, was formed to Discussion advocate for a unique response. Bayer writes, “The The rise of exceptionalism in the West embrace of exceptionalism must be understood in broad In the early 1980s, when previously healthy, mostly political terms, as representing in large measure, a singu- homosexual young men began dying, the unknown lar victory on the part of gay men, their community- cause and rising numbers of deaths combined with based organisations and their allies” [8]. The alliance pro- homophobia to generate a response of blame and fear. moted the empowerment of those groups most at risk, Extreme religious right-wing advocates spoke of divine and the assurance that their rights would be protected. punishment for “sinful” lifestyles [3]. The disease was During the 1980s, public health adopted a human initially termed the gay-related immunodeficiency dis- rights framework that took societal-based vulnerability ease (GRID), or “the gay plague” [4]. Homosexual men into consideration and increasingly became involved in were openly discriminated against when they tried to societal transformation efforts [5]. HIV/AIDS was posi- access health services. tioned as not only a health condition, but also as a As haemophiliacs, women and children in the West social issue that required a political, as well as a medical, increasingly presented with the same symptoms, it response [4]. The scientific establishment’s control on became clear that the cause of illness was not related to public health was challenged, and a new type of public sexual orientation. In 1983, the human immunodefi- health initiative was called for: one that provided coun- ciency virus (HIV) was identified as the cause of AIDS. selling, protected privacy, and empowered the patient. The realization that HIV could spread to the general Lazzarini summarizes: public, and that it was linked to the life-giving and plea- surable acts of sexual intercourse, resulted in increased Descriptively, exceptionalism posited that in the hysteria. Governments, the media and scientists sought early years of the HIV epidemic, HIV was considered a quick response: “A sense of urgency defined the pro- so different, so “exceptional” in comparison to other blem, and the public information materials developed in communicable diseases that advocates and public this period often emphasized danger at the expense of health officials agreed that HIV policy should cater clear information about prevention measures” [5]. Even to the uniqueness of the epidemic rather than treat as information about modes of transmission (unpro- it like all other communicable diseases. Supposedly, tected sexual intercourse, injecting drug use, and from the argument goes, public fear was so great, the poli- mother to infant) became more accurate, the original tical power of gay men so substantial, and concern fear and stigma prevailed. over stigmatization so real, that public health autho- The gay rights movement, building on the momentum rities abandoned “traditional” approaches to commu- it had gained in the preceding decades, began campaign- nicable disease control in favor of a civil liberties ing for HIV/AIDS to be viewed as a human rights issue. approach [9]. Advocates argued that infection was not the only risk; if found positive, individuals also faced harmful discrimi- This public health approach helped contain the epi- nation [6]. In this, they were supported by public health demic among those groups most at risk, and meet, to officials, who feared that stigma would prevent those at varying degrees, their specific needs. New infections in risk from getting tested, and those infected from acces- the United States fell from approximately 130,000 in sing health services: 1984 to about 60,000 in 1991 [10]. The feared general epidemic never occurred in the West. Avoiding compulsory measures such as isolation and The hysteria surrounding HIV/AIDS faded; the media quarantine, which were so much a part of the public and public policy lost interest. The human rights
  • 3. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 3 of 8 http://www.jiasociety.org/content/13/1/47 approach that had previously been revolutionary was The Global Programme on AIDS in the World Health integrated into existing public health traditions that Organization (WHO) lacked both the funding and capa- included education, technical solutions and regular test- city to respond to the epidemic. Outside of WHO, HIV/ ing. In 1991, Bayer wrote, “As AIDS has become less AIDS was not on the agenda of other United Nations threatening, the claims of those who argued that the (UN) agencies. International responses between 1986 exceptional threat would require exceptional policies and 1996 were characterized by denial, underestimation have begun to lose their force” [11]. Highly affected and over-simplification [17]. AIDS exceptionalism was communities continued to advocate for the rights of originally a Western-focused phenomenon that advo- people living with HIV and AIDS (PLHIV) and against cated for the rights of those most affected and became a stigma, but much of the sense of urgency among the decreasing public force as effective treatment was rolled general public was lost. out in North America and Europe. When antiretroviral treatment (ART) was unveiled at the 1996 International AIDS Conference in Vancouver, International exceptionalism Canada, AIDS was transformed into a treatable disease. In 1996, UNAIDS was formed as a joint programme of The advent of treatment shifted Western priorities of UN agencies engaged in the AIDS response [17]. In response: “The availability of more advanced antiretro- 1998, it published its first set of comprehensive data on viral therapies has made it possible to treat effectively HIV/AIDS, demonstrating the global scale of the epi- those with HIV infection, thereby increasing the impor- demic, and increasing awareness about the generalized tance of early identification and tracking. These develop- epidemic in parts of sub-Saharan Africa. Such data pro- ments establish a strong case for moving beyond HIV vided an information arsenal for those advocating for exceptionalism and treating HIV antibody tests like increased resources for HIV/AIDS in mid- and high-pre- other blood tests” [12]. valence developing countries [17]. UNAIDS, adopting As technical solutions of testing and treatment gained public health rhetoric from the early AIDS response in priority, the social movement that had spurred the early the West, stressed the need for comprehensive HIV/AIDS response continued to fade from public responses that reached beyond a medical approach, and awareness. This shift was assisted by a rapid fall in the began advocating for increased funding for AIDS pro- price of the drugs. Had they remained expensive, AIDS grammes [18]. During the same period, donor countries exceptionalism would have been perpetuated. As Casar- began to scale up international aid contributions. Gen- att and Lantos noted, “Medical therapy has become eral overseas development assistance increased from US more effective but also prohibitively expensive. A medi- $53.6 billion in 2000 to US$61.1 billion in 2003 [19]. cal tragedy has been transformed into a financial crisis This aid was targeted towards issues perceived as “glo- and society has responded by establishing special pro- bal”, such as poverty, debt relief and communicable grams and sources of funding for AIDS. These man- diseases. oeuvres parallel earlier approaches to HIV testing and HIV/AIDS gained prominence among these issues reporting that have collectively come to be known as through the language of securitization and globalization. exceptionalism” [13]. The mobilization of resources to In 2000, US Vice President Al Gore said, “It [HIV] make treatment available in the West altered HIV/AIDS threatens not just individual citizens, but the very from a lethal disease to a manageable chronic illness. By institutions that define and defend the character of a 2000, AIDS exceptionalism, as it had originally been society ... It strikes at the military, and subverts the conceived, was over. forces of order and peacekeeping” [20]. The US National Throughout the rise and fall of Western AIDS excep- Intelligence Council then produced The Global Infec- tionalism, the growing global epidemic remained largely tious Disease Threat and Its Implications for the United ignored by the international community [14]. During States [21]. Six months later, the UN Security Council the 1980s, reports from Africa of similar diseases and passed Resolution 1308, stating, “The HIV/AIDS pan- symptoms were ignored [15]. There were few attempts, demic, if unchecked, may pose a risk to stability and and even resistance, to linking HIV/AIDS to “slim dis- security” [22]. In 2001, UN Secretary General Kofi ease”, as it was called in central Africa [14]. When the Annan called for a “war chest” of $7-10 billion to African AIDS epidemic was finally recognized, in the address the global HIV/AIDS crisis [23]. late 1980s, little international attention or resources The Pretoria-based Institute for Security Studies were forthcoming. In 1990 and 1991, only 6% of the wrote, “The severe social and economic impact of HIV/ total global spending for HIV prevention went to the AIDS, and the infiltration of the epidemic into the rul- developing world [16]. For international organizations, ing political and military elites and middle classes of after the first fears of a Western rampant unstoppable developing countries may intensify the struggle for poli- epidemic were allayed, HIV/AIDS was not a priority. tical power to control scarce state resources. Such
  • 4. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 4 of 8 http://www.jiasociety.org/content/13/1/47 dynamics, even singularly, have the potential to lead to manufacture cheaper generic medications. Activists in political instability” [24]. the United States, largely led by the PLHIV organization, It was argued that HIV/AIDS could hinder processes ActUp, began a sustained campaign against the US gov- of democratization by undermining social development ernment’s support for pharmaceutical companies’ patent and intensifying the struggle for resources. It was further legislation [26]. suggested that AIDS orphans could contribute to social Arguments that ART could not be provided in the unrest as they made likely recruits for terror and rebel developing world due to limited capacity and poverty groups: “Bluntly put, those who are orphaned may be were challenged by the successful implementation of indifferent to prevailing norms and values, may look for such programmes by health organizations like Médecins salvation to millenarian and fundamentalist beliefs of Sans Frontières [27]. Researchers found that people liv- one kind or another, and may ultimately do this with ing in poverty adhered to medication regimes just as assistance from a Kalashnikov or a bomb” [2]. consistently, if not more so, as those living in the devel- While there was little evidence to actually link HIV/ oped world. Economists argued that the benefits of ART AIDS prevalence and security issues [25], the discourse (keeping populations healthy for longer) outweighed the of global threats drew international attention to the epi- costs of treatment [28], adding further fuel to the demic. Barnett and Prins write, “The combination of human rights argument. AIDS, orphans and terror begins to take on an indepen- In 2002, Botswana implemented the first universal dent life, perhaps regardless of either the strength of the access programmes in sub-Sahara Africa. In 2003, the evidence or the precise value of the parallel” [25]. HIV South African Government gave in to local and interna- was seen as a virus that could have widespread reper- tional pressure and announced its public treatment pro- cussions for the most affluent and powerful, even gramme. The World Health Organization launched the though risk of infection and disease spread in these “3 × 5” campaign, aiming to place 3 million people on populations had abated. The epidemic was positioned as treatment by 2005. In 2006, 111 countries committed to a homogenous issue with impacts for both the devel- achieving universal access to prevention, treatment, care oped and developing world. and support by 2010 [29]. However, as policy and activists spoke of a global The development of international AIDS programmes HIV/AIDS epidemic, it became apparent that, like many combined with a favourable political environment to cre- diseases that are expensive to treat, how this epidemic ate a new discourse of AIDS exceptionalism. At the 2001 was experienced differed drastically by region. ART, UN General Assembly Special Session on AIDS, 189 available from 1996, proved effective in curbing AIDS nations agreed that HIV/AIDS was a national and inter- deaths in those regions that could afford the high costs national development issue of the highest priority [30]. of medications (originally more than $25,000 per patient This translated into increased international funding for per year). In those countries with mid to high HIV/ HIV/AIDS programmes. In 2002, the Global Fund to AIDS prevalence, ART remained unaffordable, even Fight AIDS, Tuberculosis and Malaria was established. In while costs dropped to about $10,000 per patient per 2003, US President George W Bush pledged $15 billion year by 2000 and to less than $100 by 2010. A mid to toward PEPFAR. In 2004, Kofi Annan prioritized HIV/ high disease burden combined with lack of health AIDS, stating, “AIDS is a new type of global emergency– resources in much of the developing world, making the an unprecedented threat to human development” [30]. benefits of ART beyond the reach of most domestic In 2004, at the Copenhagen Consensus, a policy think health budgets. While AIDS had become a chronic dis- tank in Denmark, a panel of eight prominent economists ease in the West, in most of the developing world. it ranked controlling HIV/AIDS as the number one eco- was still a death sentence. nomic priority in terms of a cost-benefit analysis in What made this discrepancy unique was the interna- health and nutrition [14]. UNAIDS Executive Director tional mobilization that occurred around it, positioning Peter Poit encapsulated the exceptionalist point of view, the inequity of treatment access for people living with saying, “This pandemic is exceptional because there is HIV and AIDS (PLHIV) as an international human no plateau in sight, exceptional because of the severity rights cause. The International AIDS Conference in and longevity of its impact, and exceptional because of Durban in 2000 called for treatment to be rolled out in the special challenges it poses to effective public action” the developing world and for prices of ART be cut. [31]. The world had realized the size and impact of the Activists in South Africa demanded that their govern- AIDS epidemic, and was treating it as an emergency. ment provide universal access to ART, despite political resistance and denial. The governments of India and The end of AIDS exceptionalism? Brazil took on the World Trade Organization, arguing Arguments against exceptionalism began to gain atten- for compulsory licensing that would enable them to tion in 2007. The amount of funding allocated to HIV/
  • 5. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 5 of 8 http://www.jiasociety.org/content/13/1/47 AIDS was called into question, as were the types of UN agencies more power than they had to address the programmes being implemented. Three important books epidemic [37]. Research and policy looked to justify the put forward new arguments. Chin and Pisani focused on role of HIV/AIDS programmes within broader health the Asian experience, suggesting that scientists, and development frameworks. Yu et al argued that UNAIDS and AIDS activists accept certain myths about HIV/AIDS funding actually increased access to other HIV epidemiology to maintain the political profile of health resources in many underserved areas [38]. A AIDS, and their own jobs [32]. Pisani spoke of resources 2007 report by the Institute of Medicine, charged with for HIV/AIDS programmes disappearing down an “ideo- monitoring PEPFAR, suggested that the vertical HIV/ logical drain” [33]. They suggested the epidemic was AIDS programme could contribute to improving overall overstated, and money and resources were being health outcomes [39]. These debates have been engaged deployed in situations where HIV would not spread any- with in more detail elsewhere [40]; here, they indicate way. Epstein’s The Invisible Cure focused on the African that the exceptionalism that was attributed to HIV/ epidemic, suggesting that one of the main drivers of the AIDS as a global issue was called into question and, epidemic in hyper-epidemic countries was concurrent occasionally, outright attacked. sexual partnering, but that such sensitive social issues The emergence of the most recent exceptionalism had not been openly or adequately addressed, despite debate is concurrent to a shift in donor country spend- the resources mobilized for curbing the epidemic [34]. ing and priorities. Some donor countries have begun The strongest argument against AIDS exceptionalism redirecting HIV/AIDS funding; in 2009, the UK Depart- has centred on the claim that responses undermined ment for International Development reassigned a por- health systems in developing countries. In a series of tion of its AIDS funds to maternal and child mortality opinion pieces in the British Medical Journal, Roger programmes and health system strengthening [41]. England argued that HIV/AIDS was not the “global cat- Médecins Sans Frontières reports that The Netherlands astrophe” claimed by “AIDS exceptionalists”, and that cut its HIV/AIDS spending by $70 million [27]. donor aid for HIV/AIDS was disproportionate to the As these changes take place, proposals are emerging contribution of HIV/AIDS to the global disease burden to reorganize disease-specific funds in new ways. Sachs [35]. England asserted that it would have been more and Pronyk argue that the Global Fund should increase cost effective to put the money into bed nets, immuni- its mandate to include health systems, maternal and zation and dealing with childhood diseases. He accused child mortality and neglected tropical diseases [42]. UNAIDS of creating “the biggest vertical programme in Similarly, Ooms et al argue for transforming the Global history”, which diverted human resources from the pub- Fund from a disease-specific fund into a “Global Health lic sector, created additional reporting requirements and Fund” [43]. HIV/AIDS is being positioned as one of poorly coordinated donor activities for governments to many health issues requiring global resources. The cur- cope with, and removed national control over spending rent and potential impacts for HIV/AIDS programmes priorities [36]. He wrote: resulting from changes in funding patterns have been well discussed [27]; here, they represent a current shift It is no longer heresy to point out that far too much away from prioritizing HIV/AIDS as a global issue. is spent on HIV relative to other needs and that this is damaging health systems. Although HIV causes The current AIDS epidemic and response 3.7 percent of mortality, it receives 25 percent of While the debate on the global exceptionality of AIDS international healthcare aid and a big chunk of continues, HIV/AIDS will prevent many sub-Saharan domestic expenditure ... Until we put HIV in its African countries from achieving the Millennium Devel- place, countries will not get the delivery systems opment Goals (MDGs) [44]. In high-prevalence coun- they need [36]. tries (those with more than 10% of adults infected: Botswana, Lesotho, Malawi, Mozambique, Namibia, England and others’ commentaries highlighted that South Africa, Swaziland, Swaziland, Zambia and Zim- many diseases and health issues (such as malaria, under- babwe), AIDS is the leading cause of death [27]. The nutrition and respiratory disorders) resulted in more epidemic has been found to decrease gross domestic deaths than those related to AIDS in many parts of the product, create food security threats, and negatively world, but were receiving less funding. Whether or not impact human resources. The consequent orphaning has this neglect was because of the prioritization of the created new social costs for the state and for the house- AIDS response or due to other factors was hotly hold to bear; the number of orphans due to AIDS in contested. sub-Saharan Africa increased from 6.5 million in 2001 UNAIDS and WHO responded defensively, noting to 11.6 million in 2007 [45]. AIDS is the leading cause that those against AIDS exceptionalism attributed the of death for women worldwide [46], directly impacting
  • 6. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 6 of 8 http://www.jiasociety.org/content/13/1/47 MDG three (to promote gender equality and empower The gap between resources required to implement women) and goal five (to improve maternal health). The HIV/AIDS programmes and those available has contin- direct link between HIV/AIDS and development in ued to grow over the past three years [49]. In 2009, Africa remains. UNAIDS and WHO predicted that the $25.1 million The number of new HIV infections each year remains needed for HIV/AIDS programmes in 2010 would not unacceptably high, and models of effective prevention be forthcoming [49]. The total amount of Global Fund programmes are few and far between. In the endemic grants recommended for funding in 2009 was 35% lower countries, mass behaviour-change campaigns, such as than in 2008 [27]. In 2010, US President Barrack Obama the ABC (Abstain, Be Faithful and Use Condoms) strat- increased funding to PEPFAR only minimally, allocating egy, have failed to achieve their intended impacts. Advo- less to the Global Fund than in previous years, and cates are stressing the need to address the systemic causing HIV/AIDS groups to express concern that the contributors to risk and vulnerability. amount allocated would not be enough to reach the tar- In South Africa, where one of the largest epidemics geted number of PLHIV in need of treatment [50]. continues to unfold, Venter writes that prevention De Waal writes, “Normalization in the sense of adjust- efforts are failing: “500 000 South Africans are infected ing reality to take account of the miseries of AIDS can each year, and there is no sign that this is letting up. In be found in many places, when it is looked for. Even the 8 to 10 years’ time, as they enter the AIDS stage, these statistics become numbing, and when lower-than- 500 000 South Africans will need ARVs, and this will expected HIV prevalence is reported, as recently in continue forever until a prevention strategy that works Kenya and Zimbabwe, it can give the impression that is implemented” [47]. things are ‘not so bad’ - when 7 to 10 percent of an In Western countries, though the epidemic is concen- adult population is living with HIV” [3]. While it may trated in specific population groups, infection rates be that international opinion has become numbed by among these groups are stable (but not declining). El- the persistence of the AIDS epidemic, it remains, to Sadre et al write from the American perspective: varying degrees in different regions, a prevalent and last- ing feature of the global health landscape. For the past decade, however, progress has been stalled. It had been anticipated that effective antire- Conclusions troviral therapy, with its suppressive effect on viral The concept of AIDS exceptionalism developed as a replication, would reduce the overall rate of new Western response to an epidemic that threatened the infections, but this expectation has not been realized. lives and rights of specific populations in the developed More than half a million Americans became infected world. As that epidemic was contained and effective with HIV in the past decade, including about 56,000 treatment became available, the case for exceptionalism in the past year [10]. shifted to the international stage, where resources and organizations were mobilized to respond to the extreme The authors advocate for interventions that “address need in developing countries. As a result, the numbers the socioeconomic milieu in which HIV transmission of PLHIV on treatment has increased each year. Infec- occurs” [10]. The social-political and human rights tion rates in much of the world have stabilized. approaches that originally motivated for an exceptional These gains have been accompanied by criticisms of response remain relevant to prevention, but are over- the type and size of response. It is argued that the HIV/ shadowed by technical solutions, such as testing and AIDS response has done harm, as well as good, particu- treatment. larly by creating vertical programmes for a single dis- Meanwhile, more than half of those in need still do ease, which may have diverted resources. As donor not have access to treatment, and treatment is posing countries shift priorities, and in the context of the eco- new challenges for sustainable funding. Most countries nomic recession, the urgency around the HIV/AIDS with mid to high prevalence cannot afford the cost of response is once again declining. treatment without international aid; as aid is reduced or This shift in policy and international priorities does cancelled, treatment programmes are threatened, drug not change the reality of an epidemic that, after three resistance develops and large numbers of PLHIV die. In decades, is still unfolding. In southern Africa, the demo- countries like Uganda, patients are being turned away graphic effects of the generalized epidemic will shape from treatment clinics due to lack of resources; 300,000 societies for generations. In other parts of the world, Ugandans in need of treatment are denied their right to HIV/AIDS continues to mark inequalities: one in 40 health [48]. These numbers will continue to grow if blacks, one in 10 men who have sex with men, and one both effective prevention and sustainably funded treat- in eight injection drug users in New York City are HIV ment programmes are not forthcoming. positive [10].
  • 7. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 7 of 8 http://www.jiasociety.org/content/13/1/47 Both the human rights approach, originally adopted by 10. El-Sadre W, Mayer K, Hodder S: AIDS in America – Forgotten but Not Gone. New England Journal of Medicine 2010, 362:967. the HIV/AIDS response, and the more recent demands 11. Bayer R: Sounding Board: Public Health Policy and the AIDS Epidemic: for universal access to treatment, remain relevant to the An End to HIV Exceptionalism? New England Journal of Medicine 1991, 33 million people living with HIV/AIDS and to their 324:1500-1505. 12. Jansen LA: HIV Exceptionalism, CD4+ cell Testing, and Conscienscious communities; these issues should also remain pertinent Subversion. Journal of Medical Ethics 2005, 31:322-326. within global health policy. Meanwhile new challenges 13. Casarett D, Lantos J: Have We Treated AIDS Too Well? Rationing and the are developing, not the least of which is the need to suc- Future of AIDS Exceptionalism. Ann Intern Med 1998, 128:756-759. 14. Behrman G: The Invisible People: How the U.S. Has Slept Through the Global cessfully integrate the HIV/AIDS response within AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time New broader public health responses to the benefit of all. As York: Simon and Schuster; 2004. Sachs notes in a commentary in The Lancet, “We are 15. Hooper E: Slim London: Bodley Head; 1990. 16. In AIDS in the World. Edited by: Mann J, Trantola D, Netter T. Cambridge: not overspending on AIDS but underspending on the Harvard University Press; 1992:. rest ... The choice is not between AIDS, health systems, 17. Knight L: UNAIDS the First 10 Years UNAIDS: Geneva; 2008. and other Millennium Development Goals. We can and 18. Levine R, Woods N, Kuczynski D, Sridhar D: Report of the UNAIDS Leadership Transition Working Group. 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  • 8. Smith and Whiteside Journal of the International AIDS Society 2010, 13:47 Page 8 of 8 http://www.jiasociety.org/content/13/1/47 46. WHO: Women and Health: Today’s Evidence/Tomorrow’s Agenda Geneva: World Health Organisation; 2009. 47. Venter F: Failure of HIV Prevention is South Africa’s Biggest Health Crisis. South African Medical Journal 2006, 96:299. 48. McNeil D: At Front Lines: AIDS War is Falling Apart. New York Time 2010. 49. UNAIDS: What Countries Need: Investments for 2010 targets? Geneva: UNAIDS; 2009. 50. Mckay B: White House Proposes 9% Increase in Global-Health Funding. Wall Street Journal 2010. doi:10.1186/1758-2652-13-47 Cite this article as: Smith and Whiteside: The history of AIDS exceptionalism. Journal of the International AIDS Society 2010 13:47. Submit your next manuscript to BioMed Central and take full advantage of: • Convenient online submission • Thorough peer review • No space constraints or color figure charges • Immediate publication on acceptance • Inclusion in PubMed, CAS, Scopus and Google Scholar • Research which is freely available for redistribution Submit your manuscript at www.biomedcentral.com/submit