Involvement of people living with non-communicable diseases

The Universal Health Coverage (UHC) Day 2021 theme of “leaving no one behind” is approprate, given the gaps in equitable access to health care during the Covid-19 pandemic. While the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana is meant to enhance equitable access to health care, in India, inequity is related to socioeconomic and political status, caste, class, geography and gender differences, among others, resulting in inequitable health outcomes and health service utilisation. These dimensions also converge and intersect, wherein schemes meant for the most vulnerable members of the community are often left behind due to lack of awareness. While accelerating progress towards UHC is essential to ensuring the health and wellbeing of all people, the brunt of inequitable access to health care is borne by those living with chronic illnesses. Every year, approximately 100 million people are pushed into poverty as a result of out-of-pocket expenditure for health care, a large proportion due to non-communicable diseases (NCDs).

NCDs, including cardiovascular diseases, cancers, diabetes, chronic respiratory diseases and mental health conditions, tend to be of long duration and are the most common causes of death and disability worldwide and in India (71 % and 63% of all deaths, respectively). Many NCDs are preventable, driven by modifiable risk factors including tobacco use, unhealthy diet, physical inactivity, alcohol use and air pollution. Besides causing financial distress, these diseases also afflict physical and mental stress, not just on those bearing the condition but, also their caregivers. These People Living with NCDs (PLWNCDs--those with the condition/s and their care givers) bear the brunt of the disease, coupled with the mental trauma of navigating a complicated health system. Pandemics only worsens the challenges faced by PLWNCDs, both in terms of derailing regular care, and also increasing risk of severe morbidity or mortality. 

To sensitise the public, set up infrastructure, and carry out NCD screenings at the primary health care level, the ministry of health and family welfare, Government of India, has implemented a National Programme for Prevention and Control of Cancer, Diabetes and Cardiovascular Disease and Stroke (NPCDCS) since 2010. India also adopted ten national NCD targets in 2013 and, thereafter, released the National Multi-Sectoral Action Plan for Prevention and Control of Common NCDs - 2017-22 (NMAP). The NMAP supports a whole-of-government (all ministries/departments of central and state governments) and whole-of-society(community, civil society organisations (CSOs), private sector) approach to NCD prevention and control. However, any reference to PLWNCDs is starkly missing in these initiatives.

Community participation and empowerment is an important best buy for achieving equitable, people-led health care and palliative care. The Alma-Ata Declaration on primary care emphasised that communities have a right and responsibility to be involved in their health. Even with years of evidence, reiterating the need of communities to be at the centre of efforts to prevent and treat NCDs, their meaningful involvement remains tokenistic. There is a gap in leveraging how PLWNCDs can be partners to health care providers, grassroots health workers and CSOs. They have unique, first hand insights and expertise of the contextual challenges to NCD prevention, diagnosis, treatment, care, and palliation and, on ensuring overall quality of life. This varied group represent a range of demographic backgrounds which can not only augment the efficiency of the health system but also, be a strong voice for NCD prevention. 

In India, there are a handful of groups making efforts towards meaningful involvement of PLWNCDs as pivotal stakeholders. The Healthy India Alliance (HIA), also known as the India NCD Alliance (www.healthyindiaalliance.org), is one such coalition focusing on concerted PLWNCD-led action. HIA has been closely involved with the Our Views, Our Voices initiative, of the global NCD Alliance (www.ncdalliance.org), wherein the perspectives of PLWNCDs are embedded into the core of civil society action planning. Through several pan-India community conversations, HIA has absorbed the expertise of the Peoples’ Collective, calling for people-centeredness in policy formulation, programme implementation and health system strengthening. HIA developed the India Advocacy Agenda for People Living With NCDs, highlighting the needs, priorities and challenges of People Living with NCDs. HIA also undertook a situational analysisto map the UHC landscape in India, the health systems’ capacity to prioritise NCDs within the ambit of UHC and, call for a people-centred response. PLWNCDs in India, have also provided key inputs for the development of the Global Charter on Meaningful Involvement of People Living with NCD, which is now open for endorsements by stakeholders (https://www.ourviewsourvoices.org/global-charter/endorse).  

The pandemic while highlighting inequities, has also shone light on the power of a united peoples’ movement in dealing with unprecedented impediments, when Covid mitigation disrupted routine services, including NCD care. Health care is no longer restricted to medical facilities, having diffused to homes and the communities. PLWNCDs and citizens have taken on the onus of care and management. This reiterates their critical role as key players in the effectiveness of a hybrid, in-person and virtual health care system.  Meaningful involvement of PLWNCDs warrants leadership and active involvement in all aspects of the NCD response including – governance, policy formulation and enforcement, design and delivery of programmes and services, community mobilisation, evidence generation and impact evaluation.

The way forward:

• Equity- investing more in health and ensuring investments are adequate to fulfil needs of the most vulnerable and affected populations. 
• Evidence-based decision making--robust evidence generation is essential to feed into fulfilling gaps in current strategies and formulating new policies.
• Capacity-building for meaningful involvement--a people-led, peer network will strengthen national and sub-national initiatives of PLWNCDs, securing them as decision-makers in shaping individual and community level health agendas.
• Central role in government and civil society initiatives--the experience and expertise of PLWNCDs must inform multi-stakeholder and multi-sectoral initiatives to address NCDs and achieve UHC.

PLWNCDs represent a diverse and dynamic section of society, with valuable social, economic, cultural and professional skills. They are a rich human resource that embodies the humane facet to the statistics that NCDs and UHC are often restricted to. They must thrive and lead the way so that no one is left behind, in letter and spirit.