Is there inadequate engagement of communities and civil society in response to tuberculosis (TB)?
How to conceptualize and establish a community-integrated model for TB management and control and how to align local resources and knowledge to create the support system for this bacterial infection?
These are some of the important questions that require the attention of the global health donors and stakeholders.
There are isolated instances, which demonstrate roles of civil society in awareness building, case detection and referrals, treatment adherence and community support supervision and treatment management.
But, some of these local efforts on working with communities are not that much forceful to showcase the impact of these civil society led community model on TB programme.
The traditional top-down, passive biomedical approach to TB has resulted in unmotivated, poorly organised, disintegrated and underfunded communities. This requires a strong overhaul of making civil society as the lead partner to turn the tables.
Tuberculosis is one of the top ten causes of death across the world. According to the World Health Organisation, over 10 million people were afflicted with TB worldwide in 2015, out of which 1.8 million succumbed to the disease.
In India alone, there were 2.8 million cases of TB in 2015 and 4.80 lakh deaths. As per WHO’s Global TB Report 2015, TB incidences in India were highest in the world.
It is an established fact that tuberculosis is found most often within the context of economic and social vulnerabilities, and patients receiving TB treatment services frequently experience psychological, social and economic problems that may interfere with their ability to complete treatment.
This is where civil society needs to be engaged at a larger scale to make their presence visible. There is also a need to map the community response to identify and address barriers and gaps in representation, systems and services.
The provision of high-quality care for tuberculosis patients requires an effective implementation of social conditions, which underlie the occurrence of TB and can prevent positive outcomes or can expose a TB patient to significant economic or social risk.
As we work towards the global strategy to end this infectious disease, the importance of moving beyond successes in clinical service delivery to better address the patients’ holistic health and social needs through a patient-centred care approach is what global program managers should look forward.
There is also a strong need to inform communities on the coverage, quality, effectiveness or safety of innovative strategies and innovative interventions adopted by national TB programmes.
Once the communities are involved and engaged, they can take responsibility and ownership and help enabling policy and practice to be changed for the better to improve the health of people living in resource-poor countries.
This can only become a reality, once the TB programme makes civil society a valued partner in all decisions and implementation.
Looking at the commitment to end TB globally, the national TB programme in high TB burden countries should align a coherent approach to human rights and ethics in their awareness drive.
It is equally important to provide guidance on ethical prevention, care and control of TB public staff engaged in TB control programme.
Civil society needs to be strengthened to such a greater level that it can negotiate for ensuring access to care including social support for vulnerable communities.
There is also a need to address the gap between diagnosis and treatment for drug-resistant TB and help taking up involuntary isolation of TB patients, adequate protection of healthcare workers etc as a priority task in global TB programme agenda.
WHO’s End TB Strategy aims at a 10% annual decline in TB incidence globally for 2025 by optimising use of the current tools and pursuing universal health coverage and social protection.
This can only be a reality, once the global TB programme recognizes the importance of the increasing role of civil society in TB care and control.
To have a continued effort to make the world understand and respond to this killer disease and to prevent the needless suffering it causes, it is necessary to reframe TB from simply a technical health problem, to a global development challenge requiring a whole of society to be engaged.