Community speak: Take TB out of the medical box

Shobha Shukla, Citizen News Service - CNS
Photo credit: CNS:
The last plenary at the 45th Union World Conference on Lung Health, where the panelists were former TB patients, provided a grand finale to the theme of the conference around community driven solutions to tackle TB and associated co-infections like HIV. Narrating their personal experiences, community representatives from Fiji, DR Congo, Ukraine, Nigeria and Moldavia voiced their gratitude for this great initiative of bringing more of the community/patient voices to be heard loud at an international conference, perhaps fro the first time.

Better late than never
They felt that the healthcare providers must work closely with the patients and not let the disease become more important than the patient, which unfortunately happens very often in TB.

Prominent voices 
Mesake Navugona from Fiji, a plumber by trade is a rugby player of repute and has represented Fiji in international tournaments. He is also a TB survivor and does a lot of voluntary advocacy work with children and young people around TB. He finds providing TB support very challenging in Fiji as funding is a big problem. So there is need to find out ways and means to sustain programmes that are currently being funded by international agencies, so that they continue even when funding stops.

Patrick Nsimba Mata another former TB patient from the DR Congo, has been an activist in the fight against TB since 2001. Speaking in his native language he said jokingly that being a TB patient twice in a row made him a popular figure in his country. Trained as a mathematician and physicist, and in international relations, he has received extensive training in skills from HIV testing and counselling to computer skills. He is the Deputy National Secretary and Project Coordinator for Club des Amis Damien (CAD) and through this organization helps spread treatment literacy in the community and in TB patients. His organization also provides psychosocial support through home visits.

Oleksandr Kulchenko, of the All-Ukrainian Network of People Living with HIV (Ukraine) said that though HIV-TB activities should be integrated at all levels—national, regional and community level. In Ukraine it was currently happening only at the national level.

Edith Garba of Nigeria, who could not come to the conference due to some last minute problems, did send her message. A lawyer by profession, she has successfully completed her 20-month multidrug-resistant tuberculosis (MDR-TB) treatment. According to her ‘health is a fundamental human right and can be achieved through full participation and integration of individuals and communities’.

There are many challenges in keeping TB survivors engaged as volunteers. Kulchenko said that TB patients get treated and forget about the disease. So one is left with people living with HIV (PLHIV) to be TB activists as well. In Ukraine PLHIV volunteers are not asked to work in TB clinics given their propensity to catch TB infection easily, but are involved to do peer education with most at risk populations for TB. Help is taken from people from others, like HIV negative people to work in TB clinics.

Patrick too has faced difficulties in sustaining volunteers in his organization, which acts as an interface between patients and communities. But they have found a way around. In their first contact with presumptive TB patients they focus on raising awareness on TB. Then after screening for TB and being put on treatment if need be, the patients are invited to join the CAD as volunteers.

Oxana Rucsineanu from Moldova also lamented that it is difficult to engage former TB patients, more so because doctors and nurses do not become friends with patients. TB activists should aim to bridge this current disconnect between medical personnel and TB patients and try that they work closely with each other. Doctors have to be patient with their patients. A two-way communication between healthcare providers and the recipients can go a long way in improving TB care and control.

Way forward
There has to be a sense of urgency while combating TB. TB treatment is not just about giving medicines but also about making patients partners of doctors in combating the disease.

There seems to be a lack of interest and awareness around TB in the general population and even in doctors. So there is need to talk more about the disease in public and in affected communities in order to give correct information about the spread, control and treatment of TB. Patient groups comprising former TB patients can become very effective tools in spreading awareness and can also be trained to become good counselors. In fact NTPs could very well use cured TB patients as counselors. This will not only help in their economic rehabilitation but benefit the programme immensely too as they are better equipped to talk to other TB patients and counsel them on their treatment as well as psychological needs.

Proper communication at all levels is the key to success of TB programmes. Treatment literacy given in simple language is bound to increase adherence as well as cure rates. Talking with patients in a language that they can understand easily is very important and so is using appropriate vocabulary. Words like ‘TB suspect’, ‘defaulter’ have very negative connotations and must be avoided at all costs.

But political will is equally important, as patient organizations cannot achieve anything alone without proactive involvement of the governments.

As Dr Mario Raviglione, Director of the Global TB Programme at WHO had told Citizen News Service (CNS): “Civil society and community has a major responsibility to produce the political push that obliges governments to act on what they endorse at international meets. In the case of HIV/AIDS, it was through community pressure that politicians heeded the call for action.The same type of situation has to happen for TB. It has to be ensured that governments actually implement measures for TB care and control at all levels--local, state and national levels. So it is the countries’ responsibility to take the lead and politicians to take forward the agenda to deal with this major global health problem that kills 1.5 million people every year.”

Partnerships between governments, doctors, NGOs, and patients are crucial to not only dispel stigma surrounding the disease, but also help achieve the goals of the new post 2015 Global TB strategy of the WHO.

Shobha Shukla, Citizen News Service (CNS) 
4 November 2014
(The author is the Managing Editor of Citizen News Service - CNS. She is supported by the World Health Organization (WHO)'s Global Tuberculosis Programme to report from the 45th Union World Conference on Lung Health in Spain. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on gender justice, childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, and MDR-TB. Email:, website: