From Commitments to Action: Centering Lived Experience in NCD Responses

By Shreya Komar Reprint | | Print |

Participants at the fourth UN High-Level Meeting on the Prevention of Noncommunicable Diseases and Mental Health (NCDs), held in September 2025. Credit: UN Photo/Eric Kanalstein

UNITED NATIONS, Sep 25 2026 (IPS) - On September 21, just prior to the opening of the United Nations General Assembly Debate (UNGA81), the NCD Alliance held its fifth Multi-stakeholder Gathering, “Strategies for a Sustainable NCD and Mental Health Response,” during the UN High-level Week.

“This meeting may be on the sidelines of the UN General Assembly, but the issues discussed here are central to the global health agenda,” emphasized Mary-Ann Etiebet, President and CEO of Vital Strategies and moderator of the event. She opened by highlighting the continuing global burden of noncommunicable diseases (NCDs) and the gap in funding and resources dedicated to addressing it.

The discussion centered on how countries can sovereignly lead, scale, sustain and strengthen their responses, with a particular emphasis on country ownership and “putting the country in the driver’s seat”.

The gathering focused on how countries can move from policy commitments to implementation and build sustainable responses to NCDs and mental health through governance, financing, and cross-sector partnerships.

Fleming Kondradsen, a panelist and Chief Scientific Officer at Novo Nordisk Foundation, emphasized the importance of supporting more horizontal approaches to health. Rather than creating parallel systems and new structures, he argued for strengthening and integrating NCD prevention and care into existing health systems wherever possible.

For Paula Johns, another panelist from Brazil and Executive Director of ACT Health Promotion Brazil, meaningful participation begins with a fundamental question: How do we include the public in public health? Maintaining strong relationships with communities, she argued, is essential to ensuring that health policies and interventions reflect the realities of the people they are intended to serve.

Johns also raised concerns about the growing pressures affecting young people in Brazil, describing a “mental health global pandemic”. Among the issues she highlighted were social media and sports betting, calling for greater attention and regulation of environments that can affect young people’s health and wellbeing.

The discussion reinforced the importance of looking beyond the health sector itself. Addressing NCDs and mental health requires collaboration across government, civil society, communities and other sectors that shape the environments in which people live.

For Prisca Githuka, founder of the Pink Hearts Cancer Support Foundation from Nairobi, Kenya, one of the most important questions when it comes to addressing NCDs and mental health is meaningfully engaging people with lived experience. Consulting people who have experienced a disease, she said, is only the beginning. Meaningful engagement means involving people with lived experience in co-creating solutions and participating directly in decision-making structures. This distinction, she noted, separates genuine participation from tokenism.

People with lived experience should not simply be invited to share their stories. They should have a meaningful role in shaping decisions that impact their health, and their contributions should be fairly compensated. Githuka also stressed the importance of measuring whether people’s input actually influences outcomes. Engagement should not end when feedback is collected. Instead, stakeholders should ask: What changed as a result of that feedback? And did the final implementation actually benefit the people with lived experience?

Her own advocacy work has included petitions and efforts to secure funding and support for cancer patients, including advocacy around oncology packages and the National Health Insurance Fund.

The emphasis on advocating for lived experience at the forefront of decision-making also highlighted the impact of smaller organizations and community-based groups. For many of these organizations, their most important contribution is their proximity to the communities affected by NCDs and mental health conditions. Their stories can provide insight into gaps that may not be visible in national strategies or global commitments.

For people with lived experience with NCDs and mental health conditions, being in the room is only the first step. The measure of meaningful engagement is whether they have a voice in decisions, whether that voice influences what happens next, and whether the resulting policies and services improve their lives.

IPS UN Bureau Report