Without community participation we cannot end TB

Shobha Shukla, Citizen News Service - CNS
Community focus was the overriding theme at the Annual TB Alliance Stakeholders Association Meeting held in Liverpool, just ahead of the 47th Union World Conference on Lung Health. Community representatives, Maurine Murenga and Sarah Mulera, shared their experiences from the ground, regarding the powerful, yet under utilised, role which affected and key populations can play to turn the tide against TB.

Maurine, who is living with HIV, lost her father to TB in 1999 due to drug stock outs, resulting in treatment interruption. She called stigma the mother of TB and human rights violations the grandmother of TB. She cited the general mistrust that exists between the community and researchers. Traditionally the community is not involved actively in the designing of research studies. And when sometimes these studies run into problems—they might take a long time to complete or cost too much money—the community participants are suddenly left in the dark without any information about the study outcomes. Maurine insisted, and rightly so, that community members should be partners, and not mere subjects in any research study. “We must focus to use the community to be able to understand their problems and challenges. Community knows best what works. We must involve them during the drug development stage too”, she said.

She gave the example of the roll out of PrEP to sex workers on a priority basis in Kenya. Despite their dire need for protection from HIV and despite a lot of advocacy, the uptake of PrEP in this population was very poor. A meeting with the sex workers revealed that it was the blue colour of the pill that was a deterrent. They confided that it was common practice amongst sex workers to mix a blue coloured pill in their clients’ drinks to drug and rob them. So the blue pill was like a sign of danger and if anybody found them with it, it would spell doom for them. Also,the colour of the PrEP pill was the same as that of ARVs. So if people saw them using a blue pill they might think them to be HIV-positive, and this would result in losing their clients. “So the uptake failed just because of the colour of the pill. Good intentions failed due to lack of community involvement.

Community engagement affects the work that is done on the ground. We need to continue connecting with them directly and provide the benefits of the research to the community that had participated in that particular study. Community engagement is also important in the roll out of research findings. Working with community is simply putting knowledge in the hands of those who seek to make changes,” she said. Sarah Mulera, who comes from Kibera, the largest Kenyan slum infamous for its overcrowding, poverty and lack of sanitation, lost her best friend to TB and then, along with her two kids, cared for her friend’s three children, one of whom was diagnosed with TB. She saw the 9 year old through his 8 months of gruelling TB treatment, more so when there were no correctly dosed child friendly formulations available. But her frequent visits to the TB clinic with the child ended in the clinician training her as a community health volunteer. Now she works as a community engagement officer with Kenya Medical Research Institute. Sharing her learnings of working with the community for over 30 years, Sarah stressed that community engagement is critical in identifying the obstacles that are there in treating diseases like TB. “When I started working as a community health volunteer, adherence to treatment was a big problem. When I spoke to the patients, many said that they were having difficulty in getting permission from their workplace to come to clinics to get the medicines. We need innovative solutions like use of mobile clinics, or extended working hours of the clinics so that patients can get their medicines without having to stay away from work. We cannot implement programmes unless we talk to the people and take their problems into consideration”, she said.

There has to be a two way communication between researchers and the community to bridge the gaps. The community should not feel, as they often do, that researchers come just to see their poverty. The community has to be told that researchers have skills that can help improve their health. Likewise, researchers also need to understand why the community resists them and refuses to cooperate with them. Whenever some research is carried out in a particular community, it is important to share the results of the research with the same community. “When we create relationships of trust with communities, we will see a drastic improvement in their health response to other diseases as well—patients who come to be screened for TB will be more willing to be tested for HIV and other health issues”, felt Sarah. “The importance of community engagement became apparent during the recent roll out of child friendly TB formulations in Kenya this year. As the ground work for community engagement had been done, roll out became easy. Over the past few weeks people like have been using their existing networks and relationships to educate parents and caregivers about the new paediatric drugs and the results are already amazing. We need to continue engaging the community to enhance TB prevention and control”, she said.

At the WHO Global TB Symposium, Suvanand Sahu, Deputy Executive Secretary of the Stop TB Partnership, also made similar points. He said that consultations with affected communities can help inform the assessment of TB burden and response. Communities should be equal partners of the TB response and involved meaningfully in the planning of the programme itself. “The community is also a source of valuable data—both quantitative and qualitative. The latter is very useful for the programme. For example, we still have a lot of missing TB patients. We need to consult with the community to know where do people go when they fall sick; what is their health seeking behaviour; what kind of services do they access when they are sick; what are the barriers they face—physical, economic, social, stigma, discrimination—in seeking services. But to get all this valuable information we have to interact with the communities”, said Sahu. All this would require a change in existing mindsets. Researchers, and programme planners will have to treat communities as equal partners, and not just beneficiaries, and empower them to be involved in all the processes of planning, implementation and monitoring. Partnerships with people with TB and impacted communities to empower them with knowledge and skills will not only accelerate the pace and promise of TB research and its uptake but also help inform the assessment of TB burden and improve responses for TB care and control.

Shobha Shukla, Citizen News Service - CNS
26 October 2016

(Shobha Shukla is providing thematic coverage from the 47th Union World Conference on Lung Health, Liverpool, United Kingdom, with kind support from TB Alliance (Global Alliance for TB Drug Development). Follow her on Twitter @Shobha1Shukla)