Community-building has always been central to these Global Forums, and this was playing out both during and between the formal sessions of the Forum: new friendships, collaborations and alliances have formed. We are going home with renewed vigour, renewed by our conversations and buoyed by the shared enthusiasm and positivity of our colleagues and peers. As Chikhulupiliro Stanley Ng’ombe, a Global Advisory Committee member of Our Views, Our Voices put it: ‘We are the flame: once ignited it will spearhead, promote and propel the action we have been talking about.’

Collaboration, momentum, optimism and courage: working as a community on NCDs

The day’s opening plenary epitomised just how far we have come since the first UNHLM in 2011 in centring the voices of people with lived experience on platforms and in decision-making. ‘Nothing about us without us’… but there is a long way still to go.

The impact of the unprecedented social movement on HIV/AIDS provides valuable lessons for the NCD community. Florence Riako Anam (Global Network of People living with HIV) described how people living with HIV came together to end AIDS deaths and smash stigma. But getting into rooms where decisions are made requires support and funding.

‘Integrating HIV and NCDs has become real. This is an opportunity to collaborate more, within the structures that you have and we have’

– Florence Riako Anam

As Edith Mukantwari (Africa Diabetes Alliance) and other advocates come forward, more are emboldened to join them, reaching broader communities. Edith stressed the need for advocates to work together across different issues: ‘Building power vertically isn’t helping anybody; we need to build power horizontally, with one another.’

Dr Ravi Ram (WHO Civil Society Commission) welcomed WHO’s Resolution on Social Participation, adopted by governments in May last year: ‘It specifically says that one-off consultations are not social participation; let’s aim higher! … This sets a new norm.’ He also dismissed the lie that NCDs are merely ‘lifestyle’ diseases: our choices are shaped and constrained by policies set by government.

Radhika Shrivastav (HRIDAY) talked about the advocacy in India that continually pushes government and the health system to ensure meaningful involvement. Civil society organisations as the link between people living with NCDs and the government: ‘Meaningful engagement is not the destination, but an ongoing process’ – Radhika Shrivasta

Dr Joseph Kibachio (Medical Advisor for NCDs and Mental Health, WHO) emphasised the difference between Geneva (where ministers of health attend the World Health Assembly) and New York (where the UNHLM will be held, and which is a whole-of-government gathering). And although NCDs are unique in having had four dedicated HLMs, this has not yet, unfortunately, been accompanied by a movement akin to that on HIV.

Be louder, push harder and demand more!

Liesl Zuhlke, NCD Alliance Board of Directors, opened the final plenary, looking forward to the coming months, to the commitments we can make and action that we can take.

‘NCDs are not just health crises: they threaten our collective future, deepen inequalities and hinder sustainable development’

– Liesl Zuhlke

The panellists all made clear that now is the time to act, the time to lead and the time to speak with one voice. As Professor Kaushik Ramaiya (Tanzania NCD Alliance) noted, we cannot fight for our own resources: we need to work together, to integrate services, to be efficient and cost-effective, and to deliver what will work for the majority.

Farah Feteha (Egyptian Society for Adolescent Medicine) introduced all delegates to the Kigali Youth Statement and called for strong youth representation at the UNHLM, so that more young people can be inspired. ‘We are the future of the future, and we need you to hear from us about what we actually need, not what you think that we need!’ Rory Nefdt (UNICEF) congratulated Farah and all the young people present for their vital contributions to the Forum. He also noted that the monitoring frameworks for NCDs look only at the age group aged 30–70, so better data is needed right across the life course.

‘Our children and youth are our most important asset: they are not only the future of society but are current stakeholders in health policy’

– Rory Nedft

Beatriz Champagne (CLAS) encouraged everyone to mobilise NCD champions. She called for all of us to know and understand the NCD community’s priorities ahead of the HLM, and for us all to hold onto our values and to be courageous in troubled times. James Reid (Helmsley Charitable Trust) felt that the Forum has confirmed Helmsley’s ambitions but challenges it to go further and deeper, supporting government-led solutions.

A particularly powerful voice was that of Chikhulupiliro Stanley Ng’ombe (Our Views, Our Voices), who called for the rallying of an army of people with lived experience, using the initiatives, tools and technologies at our disposal as ammunition. He also cautioned that if people living with NCDs are not fully represented at the UNHLM, ‘then whose meeting is it?’

The Forum was closed by Professor Joseph Mucumbitsi (Rwanda NCD Alliance), who thanked all the partners and sponsors and encouraged everyone to go home and take forward what we have discussed.

‘I hope we will all will roll up our sleeves and put what we have learned into action: a ripple effect extending regionally and globally’

– Joseph Mucumbitsi

Professor Monika Arora (NCD Alliance) highlighted the NCD Alliance’s Call to Lead as a way to ensure coordinated messaging to governments and to catalyse coordinated action ahead of the UNHLM, just 220 days away: ‘I am deeply inspired, energised and hopeful – not because the target is small, but because the determination and commitment is both enormous and palpable.’

‘Leave not just with ideas, but with a mission. Let’s be louder, push harder and demand more. We are not just participants in the fight against NCDs: we are leaders’

– Monika Arora

The final deep dives

Mobilise sustainable financing

• Integrating HIV, NCDs and mental health services can be a cost-effective way forward. Taking this approach can increase patient retention at clinics, reduce stigma towards people living with HIV, and foster both knowledge-exchange between health workers and sharing of experiences between patients.[1]
• Reducing the burden of out-of-pocket health expenditures on NCDs and mental illness requires better access to affordable quality medicines and products, including by tackling supply-chain inefficiencies and reducing the geographical barriers faced in seeking care, especially in low-income and rural areas.[2]

‘Over 60% of healthcare for NCD patients is paid out of pocket, pushing many to the brink of poverty’

– Nupur Lalvani (Blue Circle Diabetes Foundation)

Power up communities

• Mental health and NCDs have a complex bidirectional relationship and remain chronically underfunded. A shared agenda can accelerate the global response, including through better support for the health workforce, improved data collection, and through a move away from standalone psychiatric units, which can perpetuate stigma.[3]
• Implementation science is about translating community know-how into lasting change. Collaboration with communities will better ensure that interventions are practical, sustainable and impactful.[4]

‘Patient education is most effective when it speaks directly to the people of the community in their own language... No one should be left behind because of a language they don’t understand or terms they cannot relate to’

– Stephen Watiti (MRC Uganda Unit)

Inspire leadership

• It takes innovative strategies to prevent industry conflicts of interest, in the face of an onslaught of lobbying and of marketing of unhealthy products. A multisectoral approach is essential, including non-health actors, and tools have been developed to support this approach.[5]

‘Conflict of interest” as a term can sometimes position us as obstructive or hostile. Instead, we need to think about ways in which we can engage actors in processes of promoting good governance of transparency and accountability’

– Jeff Collin (University of Edinburgh) 

• What gets measured gets done, and holding decision-makers accountable for their commitments is an important part of advocacy, particularly as most countries are failing to reach the NCD targets. The WHO Global Monitoring Framework will be revised – in consultation with governments, experts and civil society – for launch at the World Health Assembly in 2026.[6]
• Healthy cities and towns can be an effective conduit to NCD co-benefits, with local leadership allowing for flexible, responsive strategies. Integrating new programs within existing systems avoids duplication and waste. Examples of action include Kigali Car-Free Day – that many of us will be attending tomorrow – which is now being adopted and scaled up in other districts.[7]

***

Thanks to all the co-hosts and rapporteurs of the parallel sessions:

[1] Tanzania NCD Alliance, Rwanda NCD Alliance and Rwanda Biomedical Centre. Rapporteur: Darence Aligula.
[2] PATH, the Coalition for Access to NCD Medicines and Products, International Diabetes Federation and United for Global Mental Health. Rapporteur: Ezra Anecho.
[3] United for Global Mental Health, NCD Alliance Kenya and UNICEF. Rapporteur: Victor Girbu.
[4] Global Alliance for Chronic Disease and The George Institute for Global Health. Rapporteur: Ummay Farhin Sultana.
[5] Healthy Caribbean Coalition, ACT Health promotion and Vital Strategies. Rapporteur: Dorial Quintyne.
[6] WHO NCDs Department. Rapporteur: Hamida Ahmadi.
[7] World Heart Federation. Rapporteur: Jason Lochmann.

About the author: 

Katy Cooper (X: @healthkaty Bluesky: @healthkaty.bsky.social) is lead rapporteur for this year’s Global Forum, the third time she has taken this role. She brings with her 20 years of experience as an independent consultant and writer in global NCDs. She chairs the UK Working Group on NCDs (a member of the NCD Alliance), which brings together 25 UK civil society organisations to highlight NCDs as a core priority for international development.