Governance and participation in health

December 2018 marked the 20th anniversary of the birth of the Treatment Action Campaign (TAC); a story that began with a T-shirt with the slogan “HIV-positive” and came to be a thorn in government’s side, a symbol of hope for people dying from HIV/Aids and an icon of activism still needed in an age of democracy. Days before the protest that founded the TAC, co-founder Zackie Achmat had spoken at the funeral of Aids activist Simon Nkoli. He vowed to fight for access to treatment, knowing from his own experience that if the right medicines were affordable and accessible people would not be dying. Four days after that protest action, activist Gugu Dlamini, who had disclosed her HIV status publicly, speaking on radio in Zulu on World Aids Day, was beaten to death in KwaMashu. “Those two events created the anger and passion that would become the momentum for organising and mobilising,” says co-founder Mark Heywood. As one more person put on an “HIV-positive” T-shirt and stood to challenge HIV stigma, more people joined. Recruitment and empowerment came through a strong treatment literacy programme rooted in spreading the word from neighbour to neighbour, patient to patient. This patient-driven, community activism would become a hallmark of the movement. It meant that people could see the power and the purpose in marching to the opening of Parliament each year, taking part in in civil disobedience campaigns and joining rallies for AZT for pregnant women and pushing big pharmaceutical companies to make drugs available.

In this interview with Susan Rifkin of the London School of Economics and London School of Hygiene & Tropical Medicine, she talks about the past and future of community participation and community participation research. Community participation, she argues, cannot be limited to an intervention; the next big challenge of research will be to understand the processes that tie community participation and health outcomes. She points to a growing recognition by policy makers that community participation is critical and necessary but not sufficient for improvement of the health of the populations. As communities become aware of their rights and their obligations, they become in a much better position to negotiate policy and the provision of services with policy-makers, she argues. At this moment most research views community participation as an intervention and therefore uses a natural scientific paradigm to look at it linearly as a causal effect. This approach is inductive and very narrow; direct causes have effects. Instead, Rifkin calls for a closer investigation of processes and how community monitoring leads to better health outcomes. The other question about the research in this area is how we address issues around power and control, key to community ownership of health programmes.

A petition backed by over 50 non-governmental organisations and charging Uganda's government with failing to prevent the deaths of two expectant mothers, Sylvia Nalubowa and Jennifer Anguko, was thrown out by the constitutional court on 5 June, but the petition's supporters plan to appeal. The Constitutional Court argued that upholding the petition, which urges the government to boost health services, would have forced judges to wade into a political issue that was outside their jurisdiction, saying that it was the work of the parliament to review the efficiency of the health sector. However, the petitioners said the court relied on outdated international law in making its decision and overlooked its constitutional obligation to protect Uganda's mothers. In throwing out the case, the justices suggested the petitioners seek an order from the High Court compelling a public officer, such as a government health worker, to carry out his or her duties, or to request compensation for individual deaths from the government.

Two lawsuits have been filed against the Ugandan government for alleged negligence in the handling of nodding disease. The disease has killed at least 200 children since 2009 and currently affects 3,500 others, according to the Ministry of Health. A local charity, Health Watch Uganda, has filed one lawsuit, and two members of parliament have filed a separate case. Health Watch Uganda has accused the government of violating the rights of affected children by not providing them with adequate health care. In February, the government rolled out a plan to fight the disease, opening three specialised clinics and training 99 health workers, but critics say it is overdue and inadequate. The Health Ministry says lack of funding has made it difficult to implement the plan. The government has vowed to fight the lawsuits, arguing that it has been conducting research into the disease in cooperation with the World Health Organisation.