JAMA Forum: AIDS in South Africa: A Story of Social Mobilization Inspired by Nelson Mandela

Lawrence Gostin, JD

Lawrence Gostin, JD

By the time Nelson Mandela was elected as South Africa’s first post-apartheid president in 1994, the AIDS epidemic in that country was fast worsening. In 1983, just 1 year after it first emerged there among young gay men, blood specimens revealed a 16% infection rate among tested gay men in Johannesburg. By Mandela’s election, AIDS had also become embedded in a predominantly black heterosexual population, especially among women and their newborns, the latter infected through childbirth and breastfeeding.

Even before ascending to the presidency, Mandela (known as Madiba throughout his country) had deplored the social conditions that gave rise to AIDS (such as poverty, disempowered women, and migratory labor) and spoke out against stigma caused by the disease. But during his presidency, Mandela’s focus was on healing a bitterly divided country, burdened from the unconscionable weight of oppression under apartheid. As he dealt with the monumental task of building a new democracy, he delegated the government’s AIDS portfolio to his deputy, Thabo Mbeki.

When Mbeki succeeded Mandela as president in 1999, he became widely known as the infamous “AIDS denier”—questioning whether HIV was the cause of AIDS and accusing the West of profiteering from antiretroviral treatments. His politics of denial almost surely killed many South Africans—as many as 300 000, according to estimates by Harvard researchers—as his use of his political power to stress African tribal “remedies” impeded access to the effective treatments that were emerging at the time. Mbeki particularly evoked the ire of AIDS advocates when he limited access to nevirapine for pregnant women, even though a 1999 Ugandan study showed that the drug reduced the rate of perinatal transmission by 50%.

In contrast to Mbeki’s politics of denialism, Mandela spent time after his presidency providing the kind moral leadership that marked a path to fighting the South African AIDS epidemic based on science and human compassion. Before a rapt audience at the 2000 International AIDS conference in Durban, Madiba advocated for action on prevention, such as education about life skills, safe sex, and reducing perinatal transmission. He urged “action at an unprecedented intensity and scale,” including efforts to “break the silence” and “banish stigma and discrimination” associated with AIDS. And in January 2005, Mandela again provided a defining moment for AIDS and South Africa, when he shocked the world by announcing, “My son has died from AIDS.” Makgatho, who had been his sole surviving son, died at age 54 years, and Makgatho’s wife had died of AIDS just months earlier. In this revelation, Madiba signaled the need to end shrouding AIDS deaths in secrecy, a practice that perpetuated stigma and hindered attempts to fight the disease.

Although Madiba was no longer at the political helm of his country, his words and his stature still had the power to inspire those fighting the epidemic and advocating for the right to treatment. The Treatment Action Campaign (TAC)—the most prominent civil society group in South Africa—challenged Mbeki’s AIDS policy in the Constitutional Court. On the day of the hearing in Minister of Health v Treatment Action Campaign (2002), 5000 people marched to Johannesburg demanding the right to treatment. The court has 2 justices with deep roots in the antiapartheid movement who are champions of the right to health and embody the ideals and strength of Madiba: Deputy Chief Justice Dikgang Moseneke, Mandela’s cellmate on Robben Island, and Justice Edwin Cameron, a world-renowned AIDS activist and humanist who has passionately fought for treatment access. Siding with AIDS advocates, the Constitutional Court ruled that the nevirapine policy violated the constitutional duty under section 27 of the Constitution to “take reasonable measures within its available resources, to progressively achieve the right to health.” The Constitutional Court would go on to use section 27 to advance the right to health in other realms, such as housing and water rights, although it maintained deference to the elected government.

Access to antiretroviral treatments in South Africa never would have occurred without intense social mobilization, especially by the TAC and its legal arm, the AIDS Law Project (ALP). In 2010, the ALP became SECTION27, taking its name from the right-to-health article of South Africa’s Constitution. In the same year the nevirapine case was decided, Madiba visited the TAC and Médecins Sans Frontières in Khayelitsha (a township outside Cape Town) wearing a T-shirt with the words “HIV Positive.” Fareed Abdullah, MD, the head of South Africa’s National AIDS Council, recalled the effect of Mandela’s gesture: “With Nelson Mandela behind us—doctors, nurses, and people living with HIV—then who could be against us?”

The year after Mbeki stepped down, Jacob Zuma was elected as democratic South Africa’s fourth president. Although Zuma is not an AIDS denier, he has clashed with the Constitutional Court over corruption charges. In 2011, Justices Moseneke and Cameron penned an opinion mandating that the government create an anticorruption agency. Moreover, Zuma has been a deeply flawed role model for HIV prevention. Early in his term, in 2006, a Johannesburg court dismissed rape charges against Zuma, as he claimed that his unprotected sex with a young woman was consensual. At his trial, he infamously said he took a shower afterwards to reduce the risk of contracting HIV—a statement that the court and AIDS activists roundly condemned. The fact that he was accused of rape only reinforced the culture of sexual violence in the country. And his choice to have several wives and multiple sex partners, some of whom were young, conveyed exactly the wrong message about safer sex.

Madiba will live forever as a humanist who transformed the world, inspiring generations about peace, forgiveness, and the power of human freedom. When his son died, according to the Globe and Mail, Madiba pleaded for not hiding HIV/AIDS, “because the only way to make it appear like a normal illness, like TB, like cancer, is always to come out and to say somebody has died because of HIV.” Madiba’s words resonated in South Africa and throughout the continent. Fighting AIDS, which has robbed many young South Africans of a future, is part of the unfinished work of South Africa’s ambitious project in health, justice, and democracy.

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About the author: Lawrence O. Gostin, JD, is University Professor and Faculty Director, O’Neill Institute for National and Global Health Law, Georgetown University Law Center, and Director of the World Health Organization Collaborating Center on Public Health Law and Human Rights.

About The JAMA Forum: JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide expert commentary and insight into news that involves the intersection of health policy and politics, economics, and the law. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.



Categories: Health Policy, HIV/AIDS, Public Health, The JAMA Forum

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