Son’s death from AIDS turned Mandela to cause he neglected

When Nelson Mandela is laid to rest Sunday in his ancestral village of Qunu, he will be interred next to three of his children, one of who died of AIDS-related causes. Makgatho Mandela, one of the former president’s sons from his first marriage to nurse Evelyn Mase, only lived to half the age of his illustrious father, and yet his death in 2005 at the age of 54 from AIDS had an almost banal quality to it.

At that time, some 900 people a day were dying from the disease that was eating its way through the country abetted by the denialist approach of Mandela’s successor Thabo Mbeki. Makgatho could have become another statistic, but Mandela used his loss to try to shatter the stigma around HIV/AIDS that was killing people by holding them back from testing and receiving treatment.

“My son has died of AIDS,” he declared at a press conference he called, together with his family members, on January 6, 2005. Edwin Cameron, then a Supreme Court judge and the only major public figure in southern Africa to have disclosed his HIV-positive status to this day, remembers the transformational effect the announcement had in a country where people were being shunned – even killed – for disclosing their HIV status.

“What he did was enormously significant in personalising it and bringing it right into his own family,” Cameron told dpa in a telephone interview. “It was a pivotal moment in our own public consciousness of the epidemic,” said Cameron, currently a Constitutional Court justice and the author of Witness to AIDS, a deeply personal account of survival for which Mandela wrote the foreword.

As world leaders flocked to South Africa this week to join the country in mourning Mandela, delegates in Cape Town were assessing the continent’s progress in providing treatment for people living with HIV. A few years ago, South Africa was the skunk of such meetings, because of the Mbeki government’s promotion of healthy eating – as an alternative to life-saving antiretroviral drugs (ARVs) – in the fight against HIV/AIDS.

At an international AIDS conference in Toronto in 2006, South Africa’s health minister was scorned for punting beetroot, garlic and the African potato. These days the country of 51 million, which has an estimated 6.1 million people living with HIV, is regularly praised for getting more people onto treatment than any other nation.

Zackie Achmat, founder of the Treatment Action Campaign (TAC) lobby group, which took the government to court to force it to treat HIV-positive pregnant women, gives much of the praise for the turnaround to Mandela. “He saved millions of lives,” Achmat said in an interview with GroundUp health website on Mandela’s legacy. Three years before Mandela revealed the cause of his son’s death he had already begun openly challenging Mbeki’s approach to the pandemic.

In 2002, he visited Achmat at his home in Cape Town after the HIV-positive TAC founder announced he was suspending his own ARV treatment until the government made drugs available to expectant mothers. Mandela urged Achmat to take his pills, promising he would lobby the government to speed up access to treatment. For Achmat, that support from Mandela was “greater than the speech at Rivonia” in 1964, when Mandela told the court that sentenced him to life in prison that he was prepared to die for his beliefs.

“When he spoke at Rivonia (court house) he had the ANC and the world behind him,” Achmat said, contrasting that with the party’s reluctance to defy Mbeki’s line on HIV/AIDS. Mandela was attempting to make up for being a latecomer to the fight against HIV/AIDS. During his five years as president between 1994 and 1999, he gave scant attention to the disease, focusing his energies almost exclusively on nation building.

Cameron, who had been critical of Mandela’s lack of leadership on the issue during his presidency, said he believed the Nobel peace laureate later came to regret that. “I think his virtual silence during his presidency troubled him deeply.” His coming out, as a campaigner for a rational, scientific approach to HIV/AIDS came in February 2002 when Mandela presented an award for health and human rights to two HIV researchers for their work on mother-to-child transmission.

In his speech Mandela took a swipe at Mbeki, joking that, when he was sick, he listened to his doctors. Later that year, he wore a T-shirt marked HIV Positive during a visit to a treatment centre and gave his Robben Island prisoner number – 46664 – to an HIV/AIDS prevention and awareness charity. By 2003, the Mbeki government had caved into the growing outcry over the escalating HIV death toll and begun rolling out ARVs. Today, more than 2.4 million South Africans are receiving ARVs and the rate of new infections is falling.

But the stigma lingers. There is a dearth of openly HIV-positive public figures, and accessing treatment can be difficult for poor people relying on under-funded public health clinics, particularly in rural areas. “The long walk to access to treatment is not over,” TAC chairman Anele Yawa told dpa. “Mandela started us on that walk. It is a commitment we pledge to shoulder. We will not let our people die.”