The most recent World Health Organization (WHO) World Tuberculosis Report estimates that in 2018, 301 000 people fell ill with TB in South Africa. The report also indicates that the real number may lie anywhere between 215 000 and 400 000 – an astonishingly wide margin. These wide margins illustrate one of the most concerning aspects of the TB epidemic in South Africa – we don’t really know how many people get sick with the often deadly disease.
As with COVID-19, we do of course count those who test positive for TB and those who are treated for TB. But, also as with COVID-19, we don’t know how many people get sick with TB and are never diagnosed, or how many die of TB, without the death ever being attributed to TB. This is partly why StatsSA’s TB death figures (around 28 600 in 2017) based on what is written on death notification forms is so much lower than the WHO’s estimate of total TB deaths in the country (63 000 in 2018) which estimates all TB deaths, not only those identified as such on death notification forms.
To help get a clearer picture of the TB epidemic in South Africa, the National Department of Health in 2016 commissioned a National TB Prevalence Survey, something that was arguably long overdue given the country’s massive TB burden. The survey, conducted by the Medical Research Council, Human Sciences Research Council and National Institutes for Communicable Disease, was set to survey 55 000 people in 2017 and 2018, but delays meant it was only completed in 2019.
Given how many people die of TB in South Africa, the survey findings should have been made public as soon as it was finalised. But that is unfortunately not what happened.
There were some promising signs in November last year when Health Minister Dr Zweli Mkhize told parliament, “We have recently completed the first ever national TB prevalence survey and the results are currently being verified by the World Health Organisation. Once verified we will have a better understanding of the TB incidence and prevalence rates. The TB prevalence survey report can also be made available to Members of Parliament once finalised.”
Spotlight understands from well-placed sources that by February 2020 the findings were indeed finalised and ready for publication.
Yet, when we asked the Department of Health about it in March, we were ignored (our questions on this were previously also ignored in November 2019). Then finally in May 2020, Dr Norbert Ndjeka, Director for Drug-Resistant TB, TB and HIV at the National Department of Health, told one of our regular contributors that due to the COVID-19 pandemic it was unclear when the survey findings would be released.
Unhappy with the ongoing delays, Spotlight requested access to the survey findings in terms of the Protection of Access to Information Act (PAIA) on 27 July 2020. Initially, it seemed the department was not sure what survey findings we were asking for. Once this was clarified, we were told “The Report was finalised early this year, we are awaiting official release of the results by Minister”. We were not however given a date by which the survey would be made public. Accordingly, we are continuing with the process set out in PAIA, although that might drag on for some time and may eventually end up in court if the department continues to delay publication of the findings.
As it stands, the publication of the findings has already been delayed for at least six months. That means six months have been lost in which researchers, government officials, NGOs and activists could have used the findings to better tailor their responses to South Africa’s deadly TB epidemic. Instead, the findings are gathering dust and becoming more and more outdated.
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There is no doubt that the Minister and his team have been extremely busy in the last six months. If they intended to announce the findings at a World TB Day event in March, one could certainly understand why such a launch might have been cancelled given the fast-unfolding COVID-19 crisis. But, while such a launch may have been cancelled, it seems clear the public interest would best have been served by releasing the findings anyway, even if it meant just publishing it on the department’s website together with a short press statement.
In a constitutional democracy like ours, important survey findings like these belong to the public. It should be published as a matter of routine as soon as it is ready. Its publication should not depend on whoever the Minister is at the time, nor should it require the submission of PAIA requests to gain access.
*Low is editor of Spotlight.
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