This does not account for the hundreds of undiagnosed cases which, due to poor case finding strategies, have yet to be identified. There is limited data on DR TB in South Africa, especially when it comes to outcomes, but what we do know is that about 30% of patients never get onto treatment.

South Africa’€™s DR TB policy leaves much to be desired and in truth makes little sense. It reeks of the inaction, lack of urgent intervention and evidence based decision-making that South Africa public health practitioners and patients are too familiar with.

The current DR-TB policy requires compulsory admission in a designated ‘€œDR-TB Centre of Excellence’€ until smear conversion which takes at least 4 months. In reality though, many patients stay for between 18 and 24 months in the hospitals surrounded by barbed wire fencing and policed by 24-hour security guards. The policy of hospitalisation is being implemented in a haphazard way, partly due to the fact that in eight of the nine provinces there is a waiting list for beds that often climbs into the hundreds on a national scale. Clinicians are allowing some to receive outpatient care rather than delay treatment in the face of the growing number of cases.

Despite this, the emerging promising results of the two community-based DR TB projects and international successes and recommendations against a policy of hospitalisation, the South African Department of Health is still reluctant to endorse patient-centred community care. The Department of Health has conveyed that it needs to ‘€œwait for all the evidence’€ to prove that this model would work. Both the urban Khayelitsha and rural Msinga project protocol and lessons have been presented over and over again. The usual doubtful response from policy makers in the audience is that these models are interesting, but efficacy and feasibility need to be assessed. ‘€˜You cannot just go into communities and implement this’€™, is the response we hear every time we engage with the Department of Health on this. While this may be true, no efforts are being made to implement patient-centred care to scale.

The greatest concern for officials is said to be the spread of drug-resistant TB in the community and in clinics. One would imagine that if infection control was such a concern, the National TB Infection Control policy would not have been in draft form since April 2007. Two years have passed since and it is still not entirely clear to health care workers as to what is expected of them to limit nosocomial spread of TB. Stated aims in the draft policy are rarely implemented: ventilation is poor, triage is limited and a lack of masks is all too common. Infection control in community settings such as public taxis, schools, churches and homes is given no attention by government. It is for these reasons that South Africa in fact has a higher absolute number of DR TB patients due to primary infection as opposed to poor adherence.

The high numbers of nurses dying of TB are also a testament to the fact that nosocomial infection is occurring. Add to this the fact that most DR TB patients have been infectious for many months due to late culture testing and it becomes clear that government’€™s argument that people’€™s right to freedom must be limited in the public’€™s interest holds little meaning.

The policy of hospitalisation means that the Department of Health is building new ‘€˜Centres of Excellence’€™ at a great cost. 70 percent of South Africa’€™s budget for TB goes to DR TB, despite our low drug susceptible TB cure rates and the world’€™s highest notification rates in some areas. Money spent in this way a waste of precious resources. The cost of building enough DR TB facilities, some of which have newly built tennis courts for patients, is exacerbated by the high cost of the second-line drugs. South Africa refuses to join the WHO Green Light Committee (GLC) which would provide quicker access to high-quality second-line drugs at reduced prices, procured through the GLC Initiative and funded through the Global Fund and UNITAID.

Beyond this, ongoing support for the DR TB programme in the form of technical assistance, independent monitoring and evaluation, and development of optimal treatment that are in line with the latest international recommendations would be made available.   Repeated questions to the Department of Health on this matter have left us with only one answer: ‘€œWe will look into it and will have to assess the impact this will have on our local manufacturers’€. This, even though South African companies are suppliers to the GLC.

Joining the GLC would not only be a cost-saver, but would also ensure a better drug regimen. While the current regimen is standardised, it is also suboptimal, with no certainty as to the effectiveness of any of the drugs in DR TB patients. The South Africa Department of Health retains the belief that the strongest drugs must be ‘€˜saved’€™ for XDR patients. In truth this will result in fewer people recovering from MDR and the numbers will keep rising.

The guidelines for DR TB are also in disarray. In 2007, an updated draft was produced. This was changed again in 2008 and is still in draft format. Many clinicians have not seen the ‘€˜updated’€™ versions. Despite submissions by civil society, it is difficult to keep pace with the policies of the Department of Health, which has purposefully not finalised the guidelines. The secretive manner in which these guidelines are amended beleaguers civil society’€™s attempts to collaborate with the Department of Health to develop a strategy to systematically address the TB epidemic.

It is clear that patients are not at the centre of policy decision making for DR TB. Beyond the policy, the Department of Health is doing little to address the challenges patients have to overcome in order to access care, such as transport allowances for patients who need to travel long distances in rural areas. The policy of hospitalising people for up to two years often leaves already poor families financially crippled. Until recently, even the social grant on which families are dependent would be cancelled while patients were hospitalised. Depression in patients is rife. Reports of ‘€˜escapes’€™ from these highly secured facilities appear almost monthly. In some areas, such as rural Lusikisiki, the closest DR TB facility is more than 400 km from people’€™s families and support structures. In the Western Cape, at Brooklyn Chest Hospital (BCH), it was ruled that five patients should be coercively hospitalised after leaving the facility during treatment. These measures are driving the epidemic under ground as people with symptoms of TB refuse to be tested for fear of being ‘€˜imprisoned’€™, with severely negative effects on the spread of TB.

The current rates of DR TB and HIV coinfection are 74% in some communities, making treatment more difficult and mortality rates higher. In 2007, TAC PWAs spoke out against the inhumane conditions at BCH. It was evident that a number of the patients were depressed and that their rights as patients were not being respected. As PWAs we will continue demanding that patients get optimal care in a patient-centred manner.

Due to the clear policy gaps and lack of political will, it is clear that people are suffering unnecessarily while being treated. As one patient reflected, ‘€œI am on ARVs, but these days I do not take them. I think it is better to die than live like a prisoner.’€

Until South Africa moves away from a policy of hospitalisation and sub-optimal treatment, we will never close the tap on new infections. In the meantime, people will continue to endure unjustifiable treatment and hardship due to negligence and a model that according to all the evidence, is not working.

Victor Lakay is the National Community Health Advocacy Coordinator

Lesley Odendal is the TB/HIV Policy Researcher

Both work at the national office of the Treatment Action Campaign, South Africa


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