Experience shows that providing treatment and care with dignity in homes of people with drug-resistant TB, particularly for those who are also co-infected with HIV, radically improves treatment outcomes.
Not only for today, the World TB Day (24 March), but also for the ongoing 3rd Stop TB Partners' Forum in Rio de Janeiro, Brazil (23-25 March 2009) and the forthcoming high-level ministerial meeting on M/XDR-TB (multi and extensively drug-resistant TB) in Beijing, China (1-3 April 2009), this is undoubtedly a food for thought.
"Experience in fighting drug-resistant TB globally comes mainly from Eastern Europe, but what we face in Khayelitsha (South Africa) is a radically different situation requiring a radically new approach," said Dr Eric Goemaere, Medical Coordinator for Médecins Sans Frontières (MSF) in South Africa.
"The number of patients with drug-resistant TB are much larger and the majority are HIV co-infected. We are applying lessons learnt in providing HIV/AIDS treatment to tackle this complex medical challenge, for example de-centralisation of treatment to the primary care level, integration of HIV and drug-resistant TB care, promotion of earlier diagnosis of drug-resistant TB, and reinforcement of treatment adherence and infection control using a patient-centred, community-based approach."
The current national policy in South Africa is one of centralised care and treatment for drug-resistant TB in regional, specialised treatment centres. Patients often spend at least six months in congregate wards. As these centres are often far from patients' homes, they are usually cut-off from their families and their livelihoods and feel abandoned. Consequently, there is a high rate of default, with up to a third of patients refusing to remain in care. There is also a waiting list for beds for drug-resistant TB patients in eight of South Africa's nine provinces.
"We are convinced that more patients will be diagnosed and successfully treated if they are supported to follow treatment in their homes and communities, rather than being isolated in specialised hospitals," said Dr Virginia Azevedo, Khayelitsha Sub-District Manager for the City of Cape Town Health Department. "Our main objectives in this project are to increase diagnosis of drug-resistant TB, improve treatment outcomes for drug-resistant TB patients, and contribute to decreasing drug-resistant TB transmission at the community and facility level in Khayelitsha."
Key aspects of the model of care include increasing drug-resistant TB case detection through staff training, community awareness, and screening of household contacts; encouraging rapid diagnosis to decrease the delay before starting treatment; improving treatment protocols; providing education and adherence counselling for patients and implementing infection control measures in clinics, patients' homes, and in the community. A small 12-bed inpatient facility to provide sub-acute care, Lizo Nobanda, is in the process of being set up in Khayelitsha.
The MSF, the City of Cape Town, and the Provincial Government of the Western Cape Department of Health released a new report to mark World TB Day, on a joint pilot project, launched in late 2007, to provide decentralised, patient-centred care, support and treatment for people with drug-resistant tuberculosis in Khayelitsha, a large township of approximately 500,000 people outside of Cape Town with one of the highest burdens of both HIV and TB in South Africa.
The TB incidence rate in Khayelitsha is at least 1,500 per 100,000 people per year – among the highest in the world. Of the nearly 6,000 people diagnosed with TB in Khayelitsha in 2008, 196 were diagnosed with drug-resistant TB and 74% of these were also HIV-infected. However, if all TB patients were to be tested, close to 400 patients would be diagnosed with drug-resistant TB each year in Khayelitsha. This would give an incidence of drug-resistant TB of around 60 per 100,000 people each year – one of the highest rates of drug-resistant TB in the world.
"The Province is very pleased to support this successful collaboration between MSF, the Provincial Department of Health, and City Health, which has produced an innovative model of care for drug-resistant TB patients in one of the highest burden areas in South Africa and the world," said Dr Giovanni Perez, Director of Metro District Health System for the Khayelitsha and Eastern sub-districts of the Cape Metro. "The development of this new model for managing drug-resistant TB care and treatment in a high HIV prevalence setting will produce valuable lessons for other areas where needs are also immense."
The drug-resistant TB treatment is long and arduous. Patients have to take up to six drugs, which are difficult to tolerate, and treatment lasts for 24 months. The development of a patient-centred approach to adherence has therefore been crucial. The project focuses intensively on counselling, education, and support to patients and their families to empower them to understand the disease, observe infection control measures, and take responsibility for their treatment.
"I am a living example that drug-resistant TB can be cured, just like normal TB, even for people living with HIV," said Busi Beko, MSF's drug-resistant TB Adherence Counsellor. "But it was not easy and I know firsthand the difficulties that people experience in trying to complete the full course of treatment. People need to feel supported and encouraged, not blamed for their disease."
While significant progress has been made in some programme areas, challenges remain: patients will still have to wait too long for their diagnosis and will have difficulties with adherence to lengthy and difficult treatment for the foreseeable future.
"Our experience in Khayelitsha tells us that the majority of drug-resistant TB transmission is occurring before patients are even diagnosed and started on treatment," said Dr Goemaere. "Patients can definitely be cured of drug-resistant TB treatment despite the fact that it is complex and resource-intensive. But it is an uphill battle. In addition to new models of care, like the one we have developed in Khayelitsha, we urgently need better rapid diagnostic tools to detect drug-resistant TB earlier and less toxic, better tolerated, and more affordable drugs to treat patients."
The Patients' Charter for Tuberculosis Care (PCTC, The Charter), which is part of the global TB strategy, stresses on the rights and responsibiltiies of people with TB - and certainly needs to be implemented so that most affected communities can take more leadership in advocating for increasing the standards of TB care and treatment.
- Bobby Ramakant