Where are all the South African TB Activists?
Christopher Colvin (Researcher, UCT, UVA)
Editorial note: In this piece Chris reflects on the TB epidemic in South Africa and the relative lack of TB activism in comparison to AIDS activism. TB affects millions of South Africans, with the drivers and targets of TB infection very similar to those of HIV. In this reflection, he asks why there is appears to be a lack of community mobilization and organized activism around TB in South Africa.
AIDS activism is probably one of post-apartheid South Africa’s most prominent and important public health and political achievements. It not only secured significant victories for the millions of its residents in desperate need of affordable and life-saving treatment but also helped to shape post-apartheid political culture in profound ways. AIDS activists helped to rejuvenate and re-orient local community governance structures, opened new spaces for civic participation in political processes at all levels, and trained a whole new generation of activists, many of whom have gone on to lead important new initiatives in housing, sanitation and gender equity.
The social, political and public health impact of AIDS activism has been the focus of much of my research over the last 15 years. It was only when I started working on a research study on TB infection prevention and control (TB-IPC) in South Africa, however, that I was struck by the relative absence of TB activism in South Africa. This seemed strange for a number of reasons. Like HIV, TB is clearly an urgent public health crisis in South Africa. This was true decades before HIV arrived in the country, it was true at the height of the AIDS epidemic when HIV infection was intensifying the risk of death from TB for millions of people, and it remains true even as HIV treatment has gotten the population over the worst of the HIV crisis. Our rates of infection continue to far exceed what the World Health Organization (WHO) considers an ‘emergency’ in TB transmission. Tens of thousands of lives, across all age groups, are cut short by TB each year, and millions more are affected by illness, suffering and lost productivity TB brings to those who survive it.
The drivers of TB infection and those it targets are also very similar to HIV. TB morbidity and mortality is felt by the same economically and racially marginalized populations and communities that are also hardest hit by HIV. And, as with HIV, we have a highly effective treatment for TB (when promptly diagnosed and effectively treated).
Why then do we have so few TB activists in South Africa? Why isn’t TB seen as a crisis in need of urgent community and political mobilization? There are of course important TB activist organizations trying to raise the alarm about TB. TB Proof is probably the most visible one and they, along with groups like TAC, MSF, Stop TB, TB/HIV Care and the AIDS and Rights Alliance for Southern Africa have done critical work in raising awareness about the (eminently avoidable) risks of TB transmission in health facilities, in public spaces (especially public transport), and in communities and homes. The Treatment Action Campaign has also made important interventions in TB, supporting the campaign, for example, to increase access the second- and third-line treatments for drug-resistant strains of TB.
And yet, one only needs to attend a TB conference in South Africa (or for that matter, anywhere globally) and see how dramatically different it feels from most AIDS conferences. Absent are the ‘global villages’ and protest songs, the keynote sessions led by prominent activist figures, the end-of-conferences statements and manifestos that characterize many AIDS conferences.
In our research on TB-IPC in South Africa, a lack of TB activism was noted by many of our participants.1 This lack was cited as one of the key reasons why so little progress had been made on critical TB policy and practice interventions like consistent mask wearing in health facilities, retrofitting of clinic infrastructure for reduced transmission, improving community members’ and health workers’ understanding of vital TB infection prevention measures, and reducing the stigma around TB infection. Our participants also offered a number of reasons why they thought TB activism seemed so much weaker than HIV activism in South Africa. They pointed out that TB had been an urgent and yet neglected public health problems for more than 100 years in South Africa, and that the racially-informed normalization of TB—as an endemic and routine disease of the poor or uneducated in the country—had persisted into post-apartheid South Africa. HIV was perceived as a new and urgent threat in need of dramatic intervention (much like the world has understood COVID-19).
They noted that while TB treatment is, for most people, cheap, quick, and easily accessible, HIV treatment was expensive, lifelong, and inaccessible to most people in the early years of the pandemic. This lack of access was the result of profiteering drug companies and racist development agencies that did not see Africans as rich enough, disciplined enough, or worthy enough to merit affordable access to these new HIV treatments. These powerful institutions of the global North provided AIDS activists with a useful set of villains around which to generate outrage and organize protest. The point here is not that these institutions were not worthy of the outrage and protest they generated. Rather, the presence of such a clearly defined and clearly responsible set of actors was an important enabling condition for the work of activism.
For the most part, TB lacks such a clear set of villains. The main drivers of TB are poor housing, poor nutrition, poor working conditions—social problems that all have multiple, complex, but vaguely defined causes. AIDS activists were strategic in their focus on a narrow policy goal—public sector access to antiretroviral therapy (ART). They could have demanded progress on the underlying drivers of HIV risk, the same set of drivers that continue to fuel TB—poverty, racial exclusion, and the social determinants that follow from these. But this was too big and amorphous an ask. To be sure, this broader context was part of the rhetoric and logic of AIDS activism. But fixing it wasn’t AIDS activists’ strategic objective.
TB activism doesn’t really have this kind of choice to make. There is no single set of reasons why the world, or South Africa, hasn’t solved the TB crisis many decades after an effective cure became available. The reasons are certainly not, in the main, pharmacological. Instead, TB activists have to contend with a wide range of interconnected failures at community, health systems, political and economic levels, failures that present no obvious villains and suggest no obvious solutions.
Health activism is a critical (and under-recognized) determinant of public health efforts to improve the health of populations. Few significant public health successes have come without the important insights of activists as well as the social and political pressures they bring. Understanding why activisms takes hold in some times and places and not in others is an important step in thinking through how to improve the reach and impact of activism across all sectors of public health, and not just the ones that most easily garner our sense of urgency or outrage.2
References
1. Colvin CJ, Kallon II, Swartz A, et al. 'It has become everybody's business and nobody's business': Policy actor perspectives on the implementation of TB infection prevention and control (IPC) policies in South African public sector primary care health facilities. Glob Pub Health. 2020;16(20):1631-44.
2. Colvin CJ. Building an implementation science of activism. Crit Pub Health. 2020;30(4):384-5.
Author Biography
Email: cjc5r@virginia.edu