The Role of Governments in the Fight Against HIV/AIDS

On the cluster map illustrating the electronic network surrounding HIV/AIDS (posted below on September 14), six different government websites show up: Sweden, Australia, the United States, the UK, Norway, and Switzerland. Three of these, Switzerland, Sweden, and the United States have all been host countries for the 12th, 4th, and 1st/3rd/6th International AIDS Conference, respectively. Australia hosted the 4th Annual IAS Conference on HIV Pathogenesis, Treatment and Prevention. Recently, Sweden has also hosted the 2007 International Workshop on HIV/AIDS with a focus on preventative work and led by two ministers from the Swedish government. 

The United States identifies itself as "a world leader in responding to the global pandemic of AIDS," the USAID website noting that:

The U.S. government has made the fight against HIV/AIDS a top priority, not only for humanitarian reasons, but because the HIV/AIDS crisis threatens the prosperity, stability, and development of nations around the world. USAID has funded almost $6 billion since inception of its international HIV/AIDS program in 1986, more than any other public or private organization. USAID currently has HIV/AIDS programs in nearly 100 countries worldwide.

In addition to USAID, the US launched the President's Emergency Plan for AIDS Relief (PEPFAR), which was recently resigned to continue for another five years. This plan increased US financial contribution for HIV/AIDS, malaria and tuberculosis by $48 billion.  Interestingly, on the PEPFAR website they make explicit their partnerships with civil society organizations, noting that "PEPFAR’s success is rooted in support for country-owned strategies and national programs with commitment of resources and dedication to results, achieved through the power of partnerships with governments, non-governmental, faith- and community-based organizations, the private sector, and groups of people living with HIV/AIDS. In 2007, 87 percent of PEPFAR partners were indigenous organizations, and nearly a quarter were faith-based."

The UK government's Department of International Development (DFID) has made a commitment to work on the UN's Millenium Development Goals, one of which is the eradication of HIV/AIDS, malaria, and tuberculosis. The Swedish International Development Cooperation Agency (SIDA) has pledged their support to UNAIDS, civil society organizations working on prevention and treatment. These exemplify a common pattern of AIDS being picked up by government offices of international development once it had been successully reframed as such an issue. As mentioned in my previous post, a major player in the reframing of AIDS as a global development issue was the UN, not only in its formation of an alliance between development-related agencies under UNAIDS, but also in their inclusion of HIV/AIDS eradication as one of the six Millenium Development Goals. The impact of this inclusion on the movement of governmental bodies on the issue is made explicit in an Evaluation Report released by the Norwegian government in which they note that "in the year 2000, the HIV/AIDS challenge was made a priority for Norwegian Development Cooperation; the time coincided with the period that HIV/AIDS was given growing political attention with the adoption of Millennium Development Goals (MDGs) by World Leaders."

The UN and HIV/AIDS Agenda Setting

The issue of HIV/AIDS has a long history of being taken up by various UN agencies. Coinciding with the reframing of HIV/AIDS as a issue of poverty and development – and arguably a major factor contributing to this reframing process – the United Nations Development Fund (UNDP) partnered with the World Health Organization (WHO; also a UN agency) in 1987 in the formation of the WHO/UNDP Alliance to Combat AIDS (Ingenkamp 2008).

1996 marked the founding of UNAIDS as a fully operational UN agency specifically dedicated to responding to global AIDS epidemic. As Nina Ingenkamp notes, “the starting point for the idea of UNAIDS was an external study of the GPA in 1992, which concluded that improved collaboration among UN agencies was needed” (2008: 37). Many of the agencies at the table agreed that the WHO was not the best organization to be addressing the AIDS epidemic giving the multidimensional nature of the problem as it was now being framed; that is, primarily as an issue of development. In replacement of the UNDP/WHO Alliance, a new alliance under the banner of UNAIDS was formed, and was composed of ten other co-sponsoring UN agencies: UN Children’s Fund (UNICEF), UN Development Programme (UNDP), UN Population Fund (UNPF), UN Educational, Scientific and Cultural Organization (UNESCO), World Health Organization (WHO), the World Bank, UN Office on Drugs and Crime (UNODCD), the International Labor Organiation (ILO), and the Office of the UN High Commissioner for Refugees (UNHCR).

UNAIDS thus plays a pivotal role in the ways in which AIDS is placed on the global agenda. The governing body of the agency – the Programme Coordinating Board – brings diverse UN agencies, governments, civil society organzations, and People Living With HIV/AIDS (PLWHA) Associations together twice a year, maintaining network ties and facilitating a space where ideas can be shared and agendas can be set. UNAIDS also maintains a network made up of major governmental donors called “Friends of UNAIDS,” composed of representatives from Australia, Belgium, Canada, Denmark, Finland, France, Germany, Italy, Ireland, Japan, Norway, Sweden, Switzerland, Netherlands, the US, and the UK. As Ingenkamp notes, “these strong interorganizational ties are a good basis for discursive, strategic and contested processes leading to global frame development and moreover build a favourable contextual factor regarding frame dissemination and consequent establishment” (2008: 26).

UNAIDS has undisputably done much to keep AIDS on the global agenda and to maintain a particular way of framing the issue that consequently leads to particular modes of action responding to the epidemic. They have done extensive lobbying to ensure that the issue is on the radar of other major international organizations, particularly those dealing with development. As one representative of the organization has noted:

When we noticed that e.g. in the document of the World summit on Aging there is not reference on AIDS we were talking to member states and persuading them that this was the issue, the global issue that should somehow be reflected, and without any problem they were accepting it.

The same informant continued on to note that within a few years “HIV/AIDS was mentioned in all development related UN documents” (2008: 39-40).

Finally, another major contribution of UNAIDS has been the collection and dissemination of country-level statistics. Prior to the founding of the organization, information regarding the epidemic stopped at the regional level, but UNAIDS was able to reveal in a global report that prevalence rates exceeded 25% of the population in some countries and was able to connect these patterns with patterns in UN conceptualizations of economic development. These numbers were widely publicized in the media (often front page) (Ingenkamp 2008).

Ingenkamp, Nina. 2008. How HIV/AIDS Has Made it: An Analysis of Global HIV/AIDS Agenda-setting Between 1981-2002. Saarbruken, Germany: VDM Verlag Dr. Muller

Media Attention to Global AIDS Epidemic

As Wellings and Field note in their book Stopping AIDS: AIDS/HIV Public Education and the Mass Media in Europe (1996), much of the media attention surrounding AIDS has been targeted at general populations, often using fear or humor to inform people about the virus and how to stop its transmission (the image at right represents one way in which two are morbidly combined). However interesting such media might be, analyzing this is perhaps not useful in a discussion regarding agenda setting – these ads arguably are a result of successful agenda setting rather than a catalyst for it. While they get the attention of “average people,” they are traditionally not aimed at organizations or governments who are in a position to create major social and political change.

More important than public service campaigns, then, is story coverage by major newspapers, and more important than either fear or humor, in getting the attention of these major news sources, is the question of expertise/credibility and resources. Miller and Williams (1993) have thus note that media is not a neutral arena. Different groups have different levels of access to media based on the credibility and expertise they are perceived as having, as well as the amount of resources they have available to them. As a result, organizations have to develop media strategies with which “to influence relevant agendas” in their favored direction (127). Government has had success in both these regards, and thus were strong in 1986 and 1987 in launching advertising campaigns intended to educate the public about HIV/AIDS, Other “alternative” groups such as gay activist organizations have had more difficulty in accessing the media, and need to rely heavily on statistics and scientific evidence in order to be seen as legitimate sources. (Miller and Williams 1993).

Regarding one such group that has had success in shaping the agenda through media coverage, Miller and Williams suggest that:

Sources which may be used as experts by the media can use their credibility with journalists to use their own agendas. It is often forgotten that even eminent scientists and doctors sometimes can be their own best publicists. One senior AIDS doctor talked of having used his authority as an ‘expert’ to use the media to ‘exert leverage on the government’. He also said that media interventions in the early 1980s ‘were very effective, not in getting money personally for research or anything, but in getting money put into health education and into services’. (1993: 132)

A Lexis-Nexis search for HIV/AIDS for both the 1980s and the 1990s resulted in over 3000 search results in all news sources, indicating that the issue was being discussed by media sources. Interestingly, however, including search terms to indicate a discussion of AIDS as a global epidemic reveal no results throughout the 1980s, but 897 for the 1990s. During the 2000s, the same search resulted in over 3000 news stories. This indicates a shift in the way the issue was framed from one decade to the next, from a US-based issue to one of global concern. The vast majority of news stories came in the second half of the 1990s and the 2000s. This does not seem to correlate exactly with other events in world government, since the first International AIDS Conference was held in 1987. However, it is interesting to note that coverage of AIDS as a global epidemic picked up substantially in 1995, the same year as the formation of the UN Programme on HIV/AIDS.

In regards to HIV/AIDS, the media appears to both respond to major events in the global agenda setting arena (as the previous example indicates), but also does much work in shaping the global agenda. For example, Human Rights Watch did not pick up HIV/AIDS as a campaign issue until 2001 (discovered using the WayBack Machine, but there were over 100 sources documented throughout the 1990s discussing AIDS as a global human rights issue. Much of the coverage dealt with activist groups advocating for the human rights of people afflicted with AIDS. In this case, one might suspect that media coverage of these actions might have prompted Human Rights Watch to take up the issue (which in turn prompted an increase in human rights framing in media coverage from 2000 to 2005 – 761 pieces in that five-year period alone, many of which were related to HRW news releases). Interestingly, 2001 was also the year that the UN General Assembly adopted a declaration of commitment regarding the relationship between HIV/AIDS and human rights. However, given the limited data available, it is difficult to tease out how much of a role the media played in getting AIDS on the global human rights agenda, and how much that was simply due to the efforts of activists. Most likely, it was a confluence of the two forces that brought attention to that particular way of framing the issue.

Miller and Williams. 1993. Negotiating HIV/AIDS information: Agendas, media strategies and the news. In Elridge (ed.) Getting the Message: News, Truth and Power, Taylor & Francis. 126-144.

Wellings and Field, 1996. Stopping AIDS: AIDS/HIV Public Education and the Mass Media in Europe. London: Lomgman.

The Role of NGOs in HIV/AIDS Agenda Setting

There is surprisingly little information available regarding the role of NGOs in the agenda-setting process regarding HIV/AIDS.

The Global Fund -- and independent organization that is affiliated with UNAIDS -- notes that:

From the beginning of the HIV/AIDS pandemic in the early 1980s, civil society became the driving force in drawing public attention to the impact of HIV/AIDS on their families, friends and communities. This was achieved through targeted advocacy campaigns aimed at key decision-makers and governments, demonstrating the necessity for action and treatment as the number of individuals infected and dying rose at an alarming and seemingly un-abating rate. Eventually civil society was able to gain international commitment and resources from governments and multilateral organizations to combat HIV and AIDS. Global resources to fight HIV/AIDS increased from approximately US $2 billion in 2001 to around US$ 8 billion in 2006. (NGOs and Civil Society, The Global Fund)

However, it remains vague exactly what these "targeted advocacy campaigns" were composed of in terms of strategies, and who exactly these early NGOs and civil society groups were.

It appears that most of the "NGOs" involved in early HIV/AIDS-related work were grassroots organizations set up primarily for education and health service delivery to infected individuals and at-risk groups. The AIDS Action Council notes that, domestically, faith-based organizations such as the Metropolitan Community Church of San Fransisco, the Glide Memorial Methodist Church (also in San Fransisco), and Multifaith Works, were vital in the early response to spread of AIDS within the U.S. (Policy Facts: Faith-Based and Community Response to HIV/AIDS)

AIDS Action themselves was formed in 1984 in an attempt to unify these organizations.  On their website, they note that

in response to the federal government's seeming indifference, groups of volunteers organized at the local level to educate their communities on HIV prevention, to care for those living with the virus, and to grieve for those lost to AIDS-defining conditions. Yet the need remained for a national voice of authority, compassion, and reason to engage and motivate our elected officials and our country. With this in mind, a handful of the nation's first and largest community-based AIDS service organizations came together to create this voice, which they called AIDS Action.

AIDS Action Council, one wing of the organization, has been specically involved with lobbying for effective legislation to address the prevention and treatment needs of the HIV/AIDs community.

On the international level, the International AIDS Alliance was established in 1993, and served as an intermediary organization working with other NGOs, governments, the UN and other international bodies, as well as individual donors and grassroots community organizations. Themselves a collection of nationally-based organizations, they focus on the needs for action in developing nations, and has done policy advocacy work as well as providing funding for grassroots organizations providing prevention and treatment.

It appears that the majority of NGOs working on HIV/AIDS were pre-occupied in simply providing service to those who were being ignored by their governments and existing medical establishments. Over time, larger umbrella organizations such as AIDS Action and the International AIDS Alliance sprung up to unify these groups, secure funding for their work, and lobby for more effective policies (primarily to local governments but also to international bodies such as the UN).

 

Celebrity AIDS Activism

Celebrities have played a large role in the history and development of HIV/AIDS activism and agenda setting, and still do to this day, as evidenced by this impressive list of celebrities who support AIDS organizations. During the 1980s and 1990s, celebrity activism around the issue took two distinct routes – supporting policy and research that would help combat the pandemic, and working to destigmatize and dispel the myths surrounding the virus. Bethina Abrahams notes that during the 1980s, celebrities:

did much to break down the stigma by not only supporting AIDS causes, but more importantly by dispelling the ignorance of the public. One important figure in this regard was Princess Diana of whom Bill Clinton said, “In 1987, when so many still believed that AIDS could be contracted through casual contact, Princess Diana sat on the sickbed of a man with AIDS and held his hand. She showed the world that people with AIDS deserve no isolation, but compassion and kindness. It helped change the world's opinion, and gave hope to people with AIDS.” Through public figures showing the error of commonly held beliefs, they not only contributed to the improved treatment of AIDS sufferers, but they also brought AIDS, a topic shrouded in taboo, into the public discourse.

The public announcements of celebrities like Rock Hudson in 1985 and Magic Johnson in 1991, helped to “give AIDS a face” (according to actress Morgan Fairchild). In the early 1990s, AIDS activism among celebrities not personally infected with the virus began to step up when Jeremy Irons donned a red ribbon at the 1991 Tony awards, a trend the continues at red carpet events to this day. The entertainment industry made a bold step towards destigmatizing AIDS with the production of Philadelphia in 1993, in which Tom Hanks plays a gay lawyer fired when his illness is discovered.

Celebrity activism surrounding AIDS, however, goes beyond personal revelation, symbolic gestures, and film production. Many celebrities have started their own AIDS foundations, including the Elizabeth Taylor AIDS Foundation -– which has purportedly donated over $8 million to support, prevention, and education organizations around the world -- the Elton John AIDS Foundation -- which provides similar grants and claims over $150 million in support of AIDS organizations. Bono has been particularly active on this issue, not only starting his own foundation – the Debt, AIDS, Trade Africa organization -- but also being instrumental in the organization of the star-studded Nelson Mandela AIDS Benefit in 2003 He has also been active in the ONE Campaign (www.one.org) to “Make Poverty History,” whose mission is large part has been dedicated to the AIDS pandemic.

Celebrities not involved in their own personal foundations become active on the AIDS issue in several other ways. Most simply donate to AIDS organizations, as evidenced by the Aids Project Los Angeles, which reports that over 80% of its funding comes from celebrities from the entertainment industry, often through “star-studded fundraisers.”

Others get involved in consumer activism. Mac cosmetics has introduced a line of lipsticks called Viva Glam that have been endorsed by celebrities such as Fergie and Mary J. Blige, the profits from which a portion go to non-profits supporting people living with AIDS. This is similar to the Product (RED) campaign launched in 2006 in part by Bono, the proceeds from which go to the UN Global Fund to fight AIDS.

Celebrities have also lent their names and faces to awareness-raising campaigns such as the I Am African campaign led by Keep a Child Alive. This campaign is composed of a series of headshots of famous actors and musicians decked out in “traditional” African garb and face paint, subtitled with “I am African.” According to the campaign website, the logic is that since we can all trace our heritage back to Africa – yes, even famous people – we should help to fight the AIDS pandemic that’s ravaging the continent.

Celebrities have been much criticized for their role in agenda setting and awareness-raising. Critics such as Deiter and Kumar argue that celebrities often hurt the issue by oversimplifying its causes and solutions and drawing attention away from more careful analysts. Daniel Drezner argues that activism often simply becomes just another part of a celebrity’s “brand,” and that it is used primarily as a way to increase his or her own publicity and income. Indeed, some of these critiques resonate with celebrity AIDS activism. Elton John does find room on his foundation website to advertise his recent tour, as well as his new ice cream flavor with Ben & Jerry’s, since some proceeds from ticket and ice cream sales go towards his foundation (thinking of where the remainder goes gives weight to Drezner’s argument). The causes and solutions to AIDS are often oversimplified in celebrity campaigns, reducing activism to the purchase of a lipstick or a donation of $1 per day, with very little discussion of structural issues that make the provision of health services so difficult regardless of the amount of money that is available. However, it is clear that celebrities have played a major role in the history of AIDS activism, and have at the very least helped immensely in educating the public, destigmatizing the illness, and reframing it as an issue of poverty and health care.

The salience of HIV/AIDS in the current global agenda

Today, AIDS features prominently on the global agenda. The International Conference on AIDS has been held annually since 1985, the most recent of which was themed “Universal Action Now." The AIDS epidemic is a leading issue on the agenda of the UN – it's featured as Goal #6 of the UN’s Millennium Development Goals, and following up on the progress of these goals is one of the 5 main issues to be tackled by the 62nd session of the General Assembly. Additionally, these session is scheduled to complete a comprehensive review of the progress achieved in realizing the Declaration of Commitment on HIV/AIDS entitled “Global Crisis – Global Action.” It is one of the issues currently being tackled by Human Rights Watch, who strongly advocate approaching the HIV/AIDS epidemic as a human rights issue, noting that “a rights-based approach to the epidemic restores the rights of people affected by HIV and AIDS, fights stigma and discrimination, and reduces vulnerability of the world's most marginalized individuals.” By framing it as such, stopping the spread of AIDS and treating its victims has been picked up as a salient issue by women’s rights organizations like UNIFEM and ICW, as well as other NGOs working with the kinds of marginalized groups identified by Human Rights Watch.

The AIDS epidemic did not always carry such weight on the global agenda, however. The first known case of what later came to be known as the AIDS virus surfaced in 1959, but little attention was paid to until it began to spread rapidly in the US in the mid-1980s. In the early years of the epidemic, it was still referred to jokingly as “gay plague” by White House officials, and ignored by President Ronald Reagan despite exponential increases in deaths from the disease before and during his presidency (he finally mentioned in 1985, four years into his presidency and after almost 6000 US AIDS-related deaths) (For an unofficial timeline juxtaposing the spread of the disease with its slow incorporation into the US agenda, click here. The trajectory of the inclusion of AIDS on the global agenda highlights the importance of key actors such as celebrities, national organizations such as ACT UP, and events such as international conferences in reframing the issue in ways that resonate with pre-existing norms.

For example, in her book The Global Response to AIDS, Christiana Bastos writes “The international agencies linked to development, external aid, and the United Nations, oriented since World War II toward understanding and alleviating the painful gaps in the world, took on the double task of defining the global dimensions of AIDS and of framing the regional and macro differences in the experiences of the pandemic . . . Responding rapidly to the prospect of a global health crisis, WHO created the Global Programme on AIDS (GPA)” WHO, along with several other actors, helped to reframe AIDS away from a stigmatized issue involving drug use and homosexuality to a virus affecting those in countries with high levels of poverty, primarily through heterosexual transmission.

Having been “on the agenda” for some time now, beginning in the mid-1980s and growing in salience ever since, the issue of AIDS is much farther along in the global-agenda cycle than is the issue being tackled by CIVIC. An extensive transnational network has been built up around the global AIDS epidemic and it has found prominent places on the agenda of the UN General Assembly. Although somewhat difficult to read, the following is a visual depiction of the density of this network.

Part of this success in issue adoption is due to a long fight in defining the problem and the issue of AIDS as a human rights issue, thus resonating with the existing orientations of such organizations, and identifying clear causes (mainly poverty, as opposed to homosexual behavior as it was originally framed at its onset) and solutions (providing affordable drugs and accessible sex education, as well as general economic development and poverty-reduction). Due to the work of many political entrepreneurs, celebrities, and organizations, it is now accepted that the spread of AIDS is a systemic, rather than an individual problem, and that it is the responsibility of more “developed” nations to provide health services to affected populations.

A Global Epidemic

According to the World Health Organization (WHO) AIDS (Auto-Immunodeficiency Syndrome) is the advanced stages of HIV (human immunodeficiency syndrome) which is caused by a retrovirus that attacks the immune system of the person infected, greatly decreasing their potential life expectancy – by as much as 20 years in heavily affected countries – by leaving them highly susceptible to other infections and certain cancers. It is potentially spread mainly though sexual intercourse, the sharing of needles, blood transfusions, and from an infected mother to her child during pregnancy, birth and breastfeeding.

AIDS is now considered a “global epidemic” by UNAIDS, the Joint United Nations Programme on HIV/AIDS. In 2007, UNAIDS in conjunction with WHO released an update on the AIDS epidemic, noting that approximately 33.2 million people worldwide are currently infected with HIV, about half of whom are women. In 2007, 2.5 million more people were infected with the retrovirus, almost 1 in 5 of those infections being of children under the age of 15. UNAIDS estimates that on any given day, 6800 more people are infected with HIV and 5700 die from AIDS, which they attribute mainly to inadequate access to prevention and treatment.

However, not all areas and people of the world are affected in the same way. The "Global South", particularly African countries, have been hit the hardest. According to Avert, an international AIDS charity, approximately 22 million people in Sub-Saharan Africa are infected with HIV, comprising approximately two-thirds of all HIV infections worldwide. 

Not all individuals within those countries are affected equally either. According to Keep A Child Alive, “AIDS has a female face almost everywhere in the developing world, and especially in sub-Saharan Africa," noting that among those 15-24, women are three times as likely to become infected as men. Children, whether or not they themselves are infected with HIV/AIDS, suffer from its consequences, as evidenced by the 13 million AIDS orphans that have been documented in Africa. The impact of AIDS on the world, then, clearly extends beyond those whom it infects directly – it affects the friends and families of its victims, as well as the economies and other institutions of their states.

In reaction to this epidemic, many national, international, and transnational organizations have sprung up to respond and attempt to slow – and perhaps – halt the spread of the deadly virus and its devastating consequences. According to the 2008 UN Report on the Global AIDS epidemic:

The epidemic has heightened global consciousness of health disparities and catalyzed unprecedented action to confront some of the world’s most serious development challenges. No disease in history has prompted a complete mobilization of political, financial, and human resources. (p. 13)

The following timeline from this report illustrates a few of the major mobilizations concerning AIDS that have occurred since 1985:

In addition to intergovernmental organizations such as the UN and WHO, many NGOs – including The Global Fund, the ONE campaign, and Keep A Child Alive – have emerged to try and improve prevention, education, and treatment of HIV/AIDS. In 2000, the United Nations incorporated combating HIV/AIDS as Goal #6 of the Millennium Development Goals, declaring the need to halt and reverse the spread of HIV/AIDS and to achieve universal access to treatment by 2010. This action was followed up by a Declaration of Commitment on HIV/AIDS taken up by the UN General Assembly. At the transnational level, many yearly or semi-yearly events have been organized to raise awareness and bring AIDS activists together, notably World AIDS Day and the International AIDS conference.