TB patients' groups are strengthening TB responses in Congo
The Patients' Charter for Tuberculosis Care (The Charter) is a part of national TB strategy in Democratic Republic of Congo (DRC) but hasn't been implemented yet officially. However the people with TB, particularly those who have successfully completed the TB treatment, have organized themselves in form of TB patients' groups or clubs for years now, and are working closely with the healthcare providers to strengthen TB responses as equal partners.
Maxime Lunga from World Care Council, Africa, who is attending the 3rd Stop TB Partners' Forum in Rio de Janeiro, Brazil, is also representing a network of TB patients' groups in DRC called 'CAD' (Club Amis-des Damien). "We started forming TB patients' groups in 1999" said Maxime. "Our motivation was the responsibility we felt towards those newly diagnosed with TB, because we had experienced TB, and we didn’t want to suffer again"
The supportive attitude of healthcare providers also helps motivate TB patients' support groups, feels Maxime. The TB patients need to work with dignity and healthcare providers need to respect them as equal partners in TB care and control, says Maxime.
Presently Maxime has a network of 50 TB patients' groups in health centres of the DRC's capital Kinshasa, and 5 TB patients' groups each in Bukavu (eastern part of DRC), Kindu and Equator.
These TB patients' support groups provide support to those newly diagnosed or currently undergoing TB treatment, engage them and help share their own experiences with each other. Providing medical, social, and psychological support is crucial, feels Maxime. Sharing of experiences of having TB, benefits of completing the treatment, or conducting home visits to support, can radically improve TB treatment outcomes, believes Maxime. TB patients' support groups are the anchors for those who are newly diagnosed of TB, says Maxime.
The Charter, although is a part of the national TB strategy in DRC, is yet to be implemented in the country. It needs to be adapted for DRC, translated into local languages, and then used as a tool to scale up the standards of TB care.
The Charter is a great tool, believes Maxime. However the governments and donors need to invest more resources to print the Charter in local languages and disseminate it widely. The awareness levels about the Charter and the rights and responsibilities of people with TB it advocates for, is abysmally low.
"We need to raise awareness about the rights and responsibilities of people with TB, use the Charter as a tool for empowering the communities and mobilizing them to advocate for enhancing the standards of TB treatment and care in their localities" asserts Maxime.
In South Africa, a MSF report released today on World TB Day (24 March) shows how community-based approaches to drug-resistant TB have improved treatment outcomes considerably.
The people with TB, particularly those who have successfully completed the anti-TB treatment, is central to improving the TB response. The communities have a key role in increasing TB case detection, reducing TB-related stigma, partnering with healthcare staff, community awareness, 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, believes Maxime.
- Bobby Ramakant