FIND Statement: Lived Experience Essential for Shaping Response to NCDs

Authors: Yvonne Kamau (FIND) and Elena Marbán-Castro (FIND)

25 September 2025

On the occasion of the Global Week for Action on NCDs, FIND’s Lived Experience Advisory Group (LEAG) urges action to accelerate programs for prevention, diagnosis, treatment, and care, emphasizing that real change will only happen when people living with NCDs and mental health conditions help shape the policies and programs that are meant to serve them. As the global community prepares for the UN High-Level Meeting and a new political declaration, it is vital that lived experience be not an afterthought but a foundation.

People living with diabetes and other cardiometabolic conditions – particularly those in low- and middle-income countries (LMICs) – face daily challenges in accessing tools to monitor their condition, treatment options such as insulin, and adequate care. The LEAG was convened in 2025 to ensure that the perspectives of people living with diabetes and other cardiometabolic conditions directly inform FIND’s strategy and activities for non-communicable diseases going forward and ensure that promises translate into impact.

“Even when medicines are available, if we don’t have diagnostics, we cannot do much. If people are not diagnosed early, we miss the opportunity to treat them early.” (Mark Barone, Brazil)

One of the key priorities emphasized by the LEAG is that medicines alone are not enough; early diagnosis and regular monitoring are critical to prevent complications in people living with diabetes. Concerns were raised about the high cost and limited availability of screening, which can hinder timely diagnosis and prevention – particularly for diabetes and other cardio-metabolic conditions.

“Diabetes screening for young adults is often not paid by insurance. Sometimes diagnosing T1D is so costly that it’s just not done. It is key to have the right diagnostic.” (Anita Sabidi, Indonesia)

“We need to highlight the interconnection between the various NCDs to the professionals and the general population. Diabetes is the key to all other non-communicable diseases.” (Mridula Kapil Bhargava, India)

In addition to stressing the interconnection between diabetes and other NCDs, members of the LEAG highlighted systemic gaps in the healthcare system, including

• Challenges posed by conflicting guidance from different specialists, exacerbated by poor coordination between different healthcare providers
• A lack of tailored guidelines for pregnant women with chronic conditions
• No consistent pathway to translate screening into treatment, underscoring the need for integrated, multidisciplinary interventions
• The need for universal health coverage (UHC) that ensures access free of charge to essential diagnostics and medicines
• Need for greater awareness and capacity building among both healthcare providers and people living with diabetes
• Quality assurance of medical devices for the treatment of diabetes

“Screening (for) diabetes is not an achievement per se. What are the next steps? How do we improve the outcomes after screening? Community Health Workers have been given screening devices to school children, but it does not translate into treatment. How to connect the cases to treatment is the challenge.” (Newton Ngugi, Kenya)

Some of the biggest challenges faced by people living with diabetes include outdated diabetes education; inadequate local insulin supply; insufficient numbers of trained providers to meet rising demand; stark inequities in access to test strips and CGMs within and across countries; and persistent mental health challenges including stigma.

The LEAG highlighted the urgent need for reliable, high-quality tools for the diagnosis and monitoring of diabetes; equitable access to these tools; updated guidelines at the community level; capacity building for health care professionals; the importance of addressing related mental health and stigma; and the need to address social health determinants.

Conclusion

While the voices of people most affected have too often been missing from high-level discussions on national and international health policies, there are promising signs of change. Increasingly, governments, multilateral agencies, and civil society are recognizing that lived experience is essential for shaping effective and equitable responses.

These voices remind us that statistics cannot convey the fear of a family unable to afford insulin, the stigma faced by young women wearing a CGM, or the frustration of being screened but not treated.

Policymakers, donors, and health leaders have a responsibility: to ensure that the perspectives of people living with NCDs and mental health conditions are embedded in decisions at every level. Only then will commitments made in 2025 translate into meaningful, equitable, and sustainable change for millions worldwide.

FIND extends its sincere gratitude to the members of the Lived Experience Advisory Group (LEAG): Mark Barone, Mridula Kapil Bhargava, Carol Nawina, Anita Sabidi, and Newton Ngugi, who have shared their time, insights, and stories with us; and whose perspectives continue to guide and strengthen the work of the NCD program.