The responses to HIV/AIDS, Ebola, and climate change provide examples for civil society engagement in NCDs, says Katie Dain. This article is part of the Solutions for Prevention and Control of Non-communicable Diseases collection by the WHO Global Coordination Mechanism on NCDs and The BMJ

Civil society organisations and community led efforts have been critical in creating momentum and accelerating action in several areas of health and sustainable development, notably HIV/AIDS, Ebola, and climate change. They have mobilised people to push for change and launched visible and effective campaigns. But what does the term “civil society” mean within the context of non-communicable diseases (NCDs)? What is its role, and how is civil society embraced within the political response?

Although there are many definitions, civil society is commonly held to refer to voluntary, non-state, not-for-profit organisations formed by people in the social sphere with commonly held values, beliefs, or causes.¹ NCD civil society covers a diverse group of organisations, including non-governmental organisations, community groups, informal social movements, patient groups, consumer groups, women’s groups, indigenous groups, youth organisations, faith based organisations, professional societies, foundations, academia, and think tanks. Within the NCD community, alliances of organisations at national and regional level have become common over the past decade, uniting disease and risk factor groups to coordinate advocacy work and amplify their efforts.²

These civil society organisations (CSOs) have an important role in setting the agenda on NCDs, raising public demand for policies, laws, and regulation, and ensuring that services reach communities. CSOs have close connections with communities and detailed knowledge of the lived experience of people affected by these conditions that may otherwise be inaccessible to policy makers. They can provide people living with NCDs a voice in decision making processes on policies that affect them and healthcare services. CSOs can highlight gaps in services for people most excluded from accessing healthcare and, when needed, deliver health promoting and lifesaving services. Crucially, CSOs hold governments to account to deliver on their promises. The NCD Alliance summarises these roles of civil society as the “four As”: advocacy, awareness, access, and accountability.

The international community has been slow to recognise and meaningfully include CSOs in the political response to NCDs. This is a mistake. The response to HIV/AIDs³ shows that making civil society integral to global and national responses is possible and that it benefits health outcomes and the scale and sustainability of the response.⁴ CSOs and people living with HIV were recognised from the start as indispensable partners, demanding increased funding, research, and equitable access to treatments globally.

Given the size of the challenge of NCDs, governments have readily signed up to a “whole of society” approach that calls on all sectors to step up. But beyond that, the specific role of civil society and people living with NCDs has been absent from the political narrative, and efforts to engage civil society within health governance, planning, and accountability have been at best tokenistic at global and country levels.

In 2018, we saw glimmers of hope that this is beginning to change, albeit belatedly. The World Health Organization’s director general, Tedros Adhanom Ghebreyesus, established a WHO civil society working group to support preparations for the third UN high level meeting on NCDs,⁵ and governments signed up to the first specific political commitment on civil society in a UN declaration on NCDs, committing to the meaningful engagement of civil society in supporting national NCD plans and amplifying the voices of people with these conditions.⁶

Next steps

These steps will not change the situation overnight. But it is a start that can be built on. So what needs to happen next to leverage the potential of CSOs and communities to accelerate action towards the NCD targets?

Firstly, civil society needs supportive legal, social, and policy environments in order to thrive. There is an alarming trend of shrinking civic space, with data suggesting that more than 3.2 billion people worldwide live in countries where civic space is repressed or closed.⁷ Therefore governments first and foremost need to foster and expand civic space for CSOs.

Secondly, more investment is needed to sustainably finance CSOs and community systems, particularly in low and middle income countries. This was a lesson from the response to HIV/AIDS, with donors such as the Bill and Melinda Gates Foundation and the Ford Foundation stepping in to channel funds to support CSOs and build skills in advocacy, budget tracking, and documenting best practice to professionalise the sector. Investment in civil society should be seen as a priority and a global public good.

Thirdly, the UN and governments need to “walk the talk” on their commitment to meaningful engagement of civil society. They need to move beyond the tokenistic efforts, view CSOs and people living with NCDs as equal partners and experts in their own right, and create truly inclusive processes at all levels of policy and programme design, governance, service delivery, and accountability mechanisms.

Fourthly, the NCD community needs to get serious about holding governments to account. We have witnessed a series of targets and commitments, but progress is off track and commitments are not being honoured. Accountability can be a crucial force for political change. Governments need to establish inclusive and transparent national accountability mechanisms that include CSOs and people living with NCDs and to foster independent accountability efforts such as CSO shadow reporting, which has been so effective in tobacco control and human rights.

We are impatient for change. The clock is ticking for the attainment of the sustainable development goals. It is time for the international community to put civil society and people with NCDs at the heart of the response and deliver for the millions of people at risk and living with NCDs worldwide.

 

Katie Dain is a commissioner on the WHO Independent High-Level Commission on NCDs, and co-chair of the WHO Civil Society Working Group on the Third United Nations High-Level Meeting on NCDs.

Competing interests: None declared.

 

 

References

1. WHO. Accelerator discussion frame. Accelerator 3: community and civil society engagement. 2018. https://www.who.int/docs/default-source/global-action-plan/accelerator3.pdf
2. NCD Alliance. Directory of national & regional NCD alliances. https://ncdalliance.org/what-we-do/capacity-development/directory-of-national-regional-ncd-alliances
3. UNAIDS. How AIDS changed everything. https://www.unaids.org/sites/default/files/media_asset/MDG6Report_en.pdf
4. UNAIDS. Stop AIDS Alliance. Communities deliver. 2015. https://www.unaids.org/sites/default/files/media_asset/UNAIDS_JC2725_CommunitiesDeliver_en.pdf
5. WHO. Terms of reference for the WHO Civil Society Working Group on the third High-level Meeting of the UN General Assembly on NCDs. https://www.who.int/ncds/governance/high-level-meetings/WHO-NCDs-civil-society-working-group.pdf?ua=1
6. UN General Assembly. Resolution adopted by the General Assembly on 10 October 2018. https://undocs.org/en/A/RES/73/2
7. CIVICUS. Worldwide attack on rights: over three billion people living in countries where civic freedoms are violated. 24 Oct 2016. https://www.civicus.org/index.php/media-resources/news/2626-worldwide-attack-on-rights-over-three-billion-people-living-in-countries-where-civic-freedoms-are-violated