Introduction
Zackie Achmat is spearheading a grassroots social initiative to provide affordable AIDS medicines to the public in a way that will not only staunch the epidemic's growth but also transform the public health system and enable communities to counter the host of other social challenges they are facing.
The New Idea
Efforts to address the AIDS epidemic in South Africa have not only included care for the infected and affected but also concerted prevention campaigns. But they have fallen glaringly short in treatment of those infected by HIV. The state is hesitant to offer affordable medicines in public hospitals to all needy people and only partially capitulated to public demands after a court injunction compelled it to offer HIV-positive pregnant women medicines to help prevent the transmission of the virus to their unborn children. While such medicines are openly available in the private sector, their prohibitively high costs put them out of reach for most poor people. Aside from seeking support from charity organizations–support that is geographically limited and constrained by available funds–poor people cannot get the medication they need.
Mixed messages as to why medicines are not yet comprehensively available have deeply confused the public, undermining prevention campaigns and other strategies to address the pandemic. As a result, significant headway must be made to stem the pandemic's ascent.
Zackie is championing the development of a grassroots social movement, the Treatment Action Campaign (TAC), to demand that the state fulfill its constitutional obligation of guaranteeing a right to life to all citizens by providing affordable AIDS medications. The campaign, largely comprising people from marginalized communities, is employing a series of soft and aggressive strategies aimed at persuading, and if necessary forcing the government to accede to public demands. These approaches will help transform the South African public health system into an efficient and effective service delivery mechanism and empower poor communities to counter more strategically the host of other social challenges they face.
The Problem
Research conducted on the HIV/AIDS pandemic indicates that South Africa has one of the highest infection rates in the world. It is estimated that over five million people are currently living with HIV/AIDS, with a staggering 600 dying each day of HIV-related causes. A comprehensive, community-based nationwide 2003 study of HIV/AIDS in the country revealed that "an increase in the socioeconomic status of a home was accompanied by a decrease in HIV prevalence when all participants were considered." In other words, though all socioeconomic groups are vulnerable to the disease, poorer groups living in urban settlements are much more likely to contract HIV.
While public and private responses to the epidemic have actively focused on prevention campaigns and care for the infected and affected, treatment itself has not enjoyed much attention. Citing myriad reasons, including the toxic side effects of AIDS medication, economic costs of a national treatment plan, and an allegedly insufficient infrastructure to provide proper counseling or monitor adherence to prescription regime, the South African government has moved dangerously slowly in expanding public access to antiretroviral drugs in the face of overwhelming evidence demonstrating that available medicines could reduce infection rates and increase life expectancy.
Even though these medicines are available in the private sector, they are simply unaffordable for the poor. The only option for low-income people is recourse to limited, charitable organizations where drugs are available for little or no cost. It has been shown that without the likelihood of treatment patients have little incentive to get tested. As a result, most infected people do not even know they are carrying the virus and so continue to spread the infection and undermine prevention efforts.
The Strategy
Zackie's work on access to HIV medicines for treatment proceeds from the stark reality that poor people, who are the largest demographic in the country, have least access to life-extending medication because of high costs and limited availability. He is therefore building the grassroots Treatment Action Campaign as a vehicle for poor communities to lobby collectively for state provision of antiretroviral medications. The movement began in the early 1990s with 10 individuals who left a leading organization for people living with AIDS because they wanted independence to engage the state on the issue of treatment. Today, TAC has grown to 8,000 members primarily from the lower socioeconomic strata in all of the country's nine provinces.
The movement has grown exponentially because of Zackie's singular insistence on educating the membership on all issues pertaining to HIV/AIDS. Given that multitude of factors–poverty, nutrition, national policies, and especially the public health system–the education provided to largely poor communities is yielding untold dividends that will have significant impact beyond the specific issue of HIV/AIDS treatment.
Recognizing the state as a group of democratically elected public servants sworn to uphold the constitutional guarantee of the right to life for each citizen, and because it is the largest body with the most abundant resources and ability to leverage more, the TAC has chosen to lobby the government to offer life-extending medications to the public and especially to the poor. In this regard, the Treatment Action Campaign has been compelled to adopt two general, complementary approaches to achieve its objectives: conciliatory/partnership and aggressive.
According to Zackie, since the Treatment Access Campaign commenced, some highly influential members of the government have offered a variety of reasons as to why the government could not or was not ready to offer or expand treatment to those infected with HIV. TAC has therefore sought to consistently and credibly challenge and dispel state arguments that HIV does not lead to AIDS, and that there are unsustainably high costs to rolling out a national treatment plan. For instance, Zackie and his colleagues note that while one of the highest costs associated with a national treatment plan is the purchase of medicines, it is possible to lower such costs radically by employing a variety of measures. One of these could be exercising flexibilities granted under the Declaration on the TRIPS (Trade-Related Aspects of Intellectual Property Rights) agreement on Public Health of the World Trade Organization (WTO) of which South Africa is a signatory, which include issuing a compulsory license allowing it or others to manufacture generic versions of patented medications when facing a national emergency. A February 2003 report found that while substantial costs would be incurred initially, the state would eventually enjoy enormous savings in reduced hospitalization costs and reduced expenditure in grants for AIDS orphans, not to mention other associated gains in restored social productivity. The state has yet to pursue such a course of action.
Part and parcel of TAC's strategies is using the law and existing democratic institutions to achieve desired objectives, and as Zackie says, "Where they don't serve the people, we expose them." Most illustrative of this strategy is TAC's work with a formidable array of partners in pursuit of a negotiated National Treatment Plan at the National Economic Development and Labor Council (NEDLAC), a statutory body charged with serving as the primary medium for dialogue between organized business, government, labor, and community on a broad set of issues including development and the economy. This approach produced a "Framework Agreement for a National HIV/AIDS Prevention and Treatment Plan" at the end of November 2002. All acknowledged that treatment formed a core component of the response to the HIV/AIDS pandemic, and despite the obstacles, they would commit all necessary resources to ensuring that antiretrovirals would be available to the public.
Another pivotal TAC strategy is creating nondiscriminatory and mutually beneficial partnerships. Given the scale and impact on society, one of the earliest goals that led Zackie to champion the formation of TAC was the need to make HIV/AIDS everyone's problem. The formidable array of social groups that have signed onto TAC as active partners include trade unions, faith-based groups, local and international citizen sector organizations, and businesses. As Zackie says, "No one is immune from recruitment into TAC." This nonpartisan policy has yielded large dividends to the movement like consultations with a trailblazing major mining house on the development of an antiretroviral treatment plan for its HIV-positive workers. It is noteworthy that this approach also applies to the government as the movement has consistently expressed willingness to assist government in the implementation of a national treatment plan and general improvement of the health system. Underpinning the strategies and largely responsible for the high public visibility that the movement enjoys is the effective use of media and other communication technologies like the Internet and email lists. In a break from other initiatives that often rely on "approached" coverage, TAC generates its own media, including an influential TV magazine program that focuses on the experiences of people living with AIDS.
These combined strategies have catapulted the movement since its formal inception in 1998 to a formidable force in demanding–and gradually achieving–HIV treatment. It is noteworthy that though the movement is at face value a single-issue initiative, its repercussions are bound to be felt elsewhere as poor communities become empowered to efficiently and strategically address the entire social challenge they face. Zackie acknowledges that the real long-term systemic impact of the movement, aside from provision of the medicines, is the radical transformation of the public health system.
TAC intends to extend its campaign first into the Southern Africa Development Community and then to the rest of the continent. This continental initiative, called the Pan-African Treatment Access Movement (PATAM), was formally launched in Cape Town in August 2002 by its two cofounders, Zackie and Milly Katana, the lobbying and advocacy officer of the Health Rights Action Group in Uganda.
The Person
Zackie had an early inauguration into social activism at the age of 14 when he participated in the 1976 antiapartheid school boycotts. From then on, he became so heavily involved in antiapartheid activities (often finding himself repeatedly arrested and detained) that he was unable to complete high school. In 1980, he toned down his intensity in the struggle and initiated and led several community-based organizations that provided both educational support to working class and poor youth and skills training for school dropouts; they also offered services in the health sector. But Zackie still continued to be active in political agitation as a member of the resistance party, the African National Congress (ANC).After political emancipation occurred in South Africa in 1994, unlike many other activists, Zackie did not join the government but chose to enliven the new constitution at the grassroots level. He realized that the struggle for social justice was going to be much more protracted than the perspective of the 1980s suggested, and he understood that the "human rights culture" required by the new South African Constitution was not something automatic and would have to be fought for. He launched a series of initiatives–one of which was the National Coalition for Gay and Lesbian Equality. As its director, he led campaigns to ensure that the Bill of Rights retained the clause prohibiting discrimination on grounds of sexual orientation. He successfully brought several cases to the Constitutional Court that saw the decriminalization of sodomy, the provision of medical aid to lesbian and gay families, and the granting of equal status to same-sex partners.
HIV/AIDS was never far from Zackie's agenda; he initiated work in this area through an NGO in 1989 to 1990. Zackie worked as a paralegal and later as head of the AIDS Law Project at Wits University–the leading NGO nationally fighting human rights abuse cases for people with HIV/AIDS. Throughout the 1990s, he felt that the struggle against HIV/AIDS was woefully disorganized and directionless. After disclosing his own positive HIV status, he turned in 1998 to do something about it–starting with a small public demonstration on the steps of St. Georges Cathedral where the Treatment Action Campaign (TAC) was born. Zackie vowed publicly not to take antiretroviral medication until it was available at an affordable price for everyone. He is currently chairperson of TAC.