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.