SA’s TB policy wastes money, fails patients

by Lesley Odendal and Victor Lakay

The AIDS epidemic hit South Africa harder than most places, and the same can be said for drug-resistant TB (DRTB). As we mark World TB Day tomorrow, the latest 2007 data is that more than 7,300 people have multidrug-resistant (MDR) TB, and that more than 500 extensively drug-resistant TB cases have been diagnosed in South Africa.

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

South Africa’s DRTB 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 African public health practitioners and patients are too familiar with.

The DRTB policy requires compulsory admission in a designated “DRTB centre of excellence” until smear conversion, which takes at least four months. In reality, though, many patients stay for 18-24 months in the hospitals, surrounded by barbed wire fencing and policed by 24-hour security guards. The policy of putting patients in hospital is being implemented in a haphazard way, partly because of the fact that, in eight of the nine provinces, there is a waiting list for beds that often climbs into the hundreds.

Clinicians, rather than delaying treatment in the face of the growing number of cases, are allowing some to receive outpatient care.

Despite this, the emerging promising results of the two community-based DRTB projects, and international successes and recommendations against a policy of putting patients in hospital, the South African Department of Health is still reluctant to endorse patient-centred community care. The department has conveyed that it needs to “wait 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 on this. Although 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 DRTB 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 and it is still not entirely clear to health-care workers what is expected of them to limit the 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 the government. It is for these reasons that South Africa has a higher absolute number of DRTB patients because of 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 DRTB patients have been infectious for many months because of late culture testing and it becomes clear that the government’s argument that people’s right to freedom must be limited in the public’s interest holds little meaning.

The policy of putting patients in hospital means that the department of health is building new “centres of excellence” at a great cost. About 70 percent of South Africa’s budget for TB goes to DRTB, despite our low drug-susceptible TB cure rates and the world’s highest notification rates in some areas.

Money spent in this way is a waste of precious resources. The cost of building enough DRTB facilities, some of which have new tennis courts for patients, is exacerbated by the high cost of the second-line drugs.

South Africa refuses to join the World Health Organisation (WHO) Green Light Committee, which would provide quicker access to high-quality second-line drugs at reduced prices, procured through the WHO initiative and funded through the Global Fund and UnitAid, an international drug-buying facility.

Beyond this, ongoing support for the DRTB programme in the form of technical assistance, independent monitoring and evaluation, and development of optimal treatment that is in line with the latest international recommendations would be made available. Repeated questions to the department on this matter have left us with only one answer: “We 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 WHO initiative.

Joining the initiative would not only be a cost-saver, but would also ensure a better drug regimen. Although the existing regimen is standardised, it is also suboptimal, with no certainty as to the effectiveness of any of the drugs in DRTB patients. The department 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 DRTB 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, 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 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 DRTB. Beyond the policy, the department is doing little to address the challenges that patients have to overcome to access care, such as transport allowances for patients who need to travel long distances in rural areas. The policy of putting people in hospital 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 in hospital. 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 DRTB facility is more than 400km from people’s families and support structures.

In the Western Cape, at Brooklyn Chest Hospital, it was ruled that five patients should be coercively sent to hospital after leaving the facility during treatment. These measures are driving the epidemic underground 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 rates of DRTB and HIV co-infection are 74% in some communities, making treatment more difficult and mortality rates higher.

In 2007, the TAC spoke out against the inhumane conditions at Brooklyn Chest Hospital. It was evident that a number of the patients were depressed and that their rights as patients were not being respected. We will continue demanding that patients get optimal care in a patient-centred manner.

The clear policy gaps and lack of political will mean that people are suffering unnecessarily while being treated.

As one patient reflected: “I 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 sending people to hospital 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 caused by negligence and a model that, as all the evidence shows, is not working.

Lakay is the national community health advocacy co-ordinator, and Odendal is the TB/HIV policy researcher at the national office of the Treatment Action Campaign