Save Our Babies

As TAC fought for fluconazole and marched on Durban, its most central battle with the government was taking shape over the prevention of mother-to-child transmission (PMTCT) of HIV. In 1998, researchers estimated that up to 70,000 children were born with HIV in South Africa. ³⁴ A national response was desperately needed.

The government initially showed resolve. A number of pilot programmes sprang up across the country. But the denialist views of the Mbeki government kept resurfacing. The government’s commitment soon wavered, and the programmes faltered.

In 1999, TAC held its first demonstrations in Cape Town, Durban and Johannesburg, calling for a national PMTCT programme. Many others followed. The government did not respond. TAC then filed a lawsuit against Health Minister Tshabalala-Msimang. The lawsuit had two main aims: to stop the Minister from blocking facilities in the public health system from providing ARVs to pregnant women with HIV, and to compel the government to develop and introduce a nationwide PMTCT programme. In court papers, Sarah Hlahlele, a young Sharpeville mother, told the story of how she was denied access to nevirapine at Sebokeng Hopstial when giving birth. TAC soon won the case in the High Court.

The government then appealed the verdict, effectively suspending its obligations until the appeal was heard. TAC then successfully sought an order demanding that the first part of the High Court judgment—prohibiting the Minister from blocking access to treatment—should be immediately implemented. The government challenged this order, which the Constitutional Court dismissed. Eventually, the Constitutional Court handed down a unanimous verdict for TAC on the main case. The court found that South Africa’s Constitution “required the government to devise and implement within its available resources a comprehensive and co-ordinated programme to realise progressively the rights of pregnant women and their newborn children to have access to health services to combat mother-to-child transmission of HIV.” ³⁵ In doing so, the Court recognised the fundamental link between access to medicines and human rights, confirming that the right to access to health care services included access to medicines and contributing to a growing body of important international legal precedents.

After several years of patchy implementation of the court order, the government grudgingly began to scale-up PMTCT programmes. In the absence of PMTCT interventions, researchers estimate that the risk of babies getting HIV ranges between 20-40%. South Africa has made significant strides in cutting the transmission rate to an estimated 1.4% in 2015. ³⁶

For TAC, PMTCT prophylaxis served as a stepping stone to a national treatment plan. In February 2003, 15,000 people took part in TAC’s Stand Up for Our Lives March to the opening of Parliament in Cape Town. The message was clear: deliver a national treatment plan, or face civil disobedience.

Nathan Geffen, the former head of policy at TAC, later wrote about the experience. ³⁷ “I was nervous about civil disobedience,” he says. “I was worried that it might backfire, that our membership would not understand why we were drawing on tactics used to fight apartheid and that public opinion, which we had fought hard to win, would turn against us.” But they persisted.

In March, hundreds of protesters marched to police stations in Cape Town, Durban and Sharpeville to demand the arrest of the Minister of Health for culpable homicide. They planned to refuse to leave, until they were arrested. In Durban, the police responded with force, tear-gassing and beating TAC members. Five people were hospitalised.

“The civil disobedience campaign generated an enormous amount of publicity” writes Geffen, affirming its effectiveness. “We broke the law intentionally, willing to take responsibility for doing so even if this meant going to prison. In our view, the moral cause for which we were fighting, preventing thousands of avoidable deaths, outweighed our duty to abide by the law.”

In November 2003, Cabinet finally approved the National Operational Plan on Comprehensive Care and Treatment for HIV. Following drastic price cuts for ARVs (see Hazel Tau’s vision) and following the threat of further legal action from TAC and ALP, the plan was rolled out in April 2004.

Tragically, Sarah did not live to see the roll-out. She passed away from the undetected side-effects of her ARVs. Sharon Ekambaram, a founding member of TAC, helped organise the funeral and saw the devastation caused by years of denialism.

“The first thing that struck me was the mountain of babies’ graves—just rows and rows of babies that had died,” she says. “The entire graveyard area was thousands of people burying their loved ones. . . You [didn’t] even know where your loved one [was].”

The HIV plan, monitored vigilantly by treatment activists, slowed the epidemic. Over time, it has transformed the national HIV response. South Africa now provides treatment to 20 percent of all people in the world currently on HIV treatment. ³⁸

Still, much work remains to be done. In 2015, 180,000 people died from AIDS in South Africa and the number of people living with HIV reached 7 million. ³⁹ And although the government has transformed its approach to HIV, other diseases remain neglected and structural barriers to accessing medicines persist. The urgency—and funding—associated with the response to HIV has not always translated to other diseases. Consider the case of tuberculosis (TB).

TB remains the leading cause of death in South Africa, ⁴⁰ and drug-resistant TB (DR-TB) is rising. There were 20,040 laboratory-confirmed cases in South Africa in 2016, more than double the amount in 2007. ⁴¹ A lack of beds, medicines, infection control and funding continue to undermine the TB response. ⁴²

But the introduction of a new DR-TB treatment, bedaquiline, offered hope. It was the first TB drug developed with a new mechanism of action in over 40 years. ⁴³ Older DR-TB regimens require painful injections, hundreds of pills over many months, and have serious potential side effects, including hearing loss and psychosis. ⁴⁴ Most concerning, only about half of all patients who start the older multi-drug resistant (MDR-TB) therapy are treated successfully, with the success rate dropping to 11-33% for those with extensively drug-resistant TB (XDR-TB). ⁴⁵ But, despite its improved efficacy and safety profile, access to bedaquiline remains limited, in part, due to excessive pricing. ⁴⁶

The government is currently purchasing 6150 six-month courses of bedaquiline per year for ZAR 61 million (around $5 million). At current prices, adding bedaquiline to the regimen of all laboratory confirmed drug-resistant TB cases in 2016 (20,040) would cost ZAR 199 million (around $15 million). This is more than triple the annual bedaquiline budget.

Researchers have estimated that a 6-month course of bedaquiline could be profitably produced at US $64 – $102 (ZAR 770 – 1230)—which is nearly a tenth of the current cost provided by the originator company. Treating all laboratory confirmed DR-TB cases with bedaquiline would cost between ZAR 15 million and 25 million at these prices.

The current DR-TB approach—exposing poor people to the risk of deafness and psychosis, with less effective treatments—is clearly not acceptable. ⁴⁷ Neither is the status quo where funding for new TB treatments pales in comparison to its global burden. But unlike HIV, tuberculosis captures few headlines. This lack of urgency is reflected globally and seen across other diseases. Diabetes is the second leading cause of death in South Africa, with non-communicable diseases—such as heart disease, cancer and diabetes—accounting for more than half of all deaths. ⁴⁸ They, too, receive relatively little attention. A child in South Africa may now grow up without HIV, a reality made possible by the PMTCT litigation, but she is confronted with the equally frightening spectre of DR-TB, diabetes, and cancer.

These disparities are made worse by structural barriers to access to medicines. The same intellectual property laws that inhibited access to ARVs are now preventing access to medicines for other diseases (see Fix the Patent Laws). The PMTCT lawsuit—while ground-breaking—was also limited: South African courts have historically interpreted the right to health narrowly by providing relief to specific plaintiffs for specific medicines. But no South African court has been presented with an opportunity to strike down an intellectual property law itself because of human rights concerns. Other courts have embraced structural change: in Kenya, the High Court rejected a counterfeit medicine law based on treatment access concerns. ⁴⁹ Applying a rights-based approach to intellectual property law—and demanding that the laws themselves change—could be transformative. ⁵⁰

If the Durban March, Defiance Campaign, and PMTCT litigation have taught us anything, it is that universal access to treatment will not be achieved without public mobilisation. And while lawsuits focused on specific treatments may extend access to some people, only structural change offers the possibility of increasing access to medicines for all (see Fix the Patent Laws). We must do better—for HIV, for TB, and for all other diseases where a lack of access to affordable medicines causes needless suffering and death.