NCDI Poverty Network Position Statement

THE MISSING PIECES

Addressing Severe Noncommunicable Diseases Among the Poorest Billion

A Position Statement for the Fourth United Nations High-Level Meeting on the Prevention and Control of Noncommunicable Diseases

THE MISSING PIECES At a Glance: Positions and Recommended Actions

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Bridge a Deadly Gap in the Global Agenda Children, adolescents, and young adults living with severe noncommunicable diseases—such as type 1 diabetes, sickle cell disease, and childhood heart disease— in low- and lower-middle-income countries must be prioritized in the global agenda.

Recommended Actions: • Include children, adolescents, and adults younger than 30 in the NCD Global Monitoring Framework and associated targets.

• Incorporate severe conditions into strategies, action plans, and country-level policies for NCDs. • Involve young people and families affected by severe NCDs in this work.

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Pursue Integrated Intervention Models

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Create Targeted Financing Mechanisms

Delivery of integrated and cost-effective services for severe NCDs can fill a critical gap in global health equity.

Recommended Actions: • Include integrated and cost-effective interventions for severe NCDs in global- and national-level plans, health services, and insurance benefits.

• Ensure that metrics and targets incorporate health-sector interventions for severe NCDs. • Improve accessibility to essential medicines and equipment, train and mentor health care workers, and implement surveillance measures for severe NCDs at the national level.

New financing mechanisms are needed to address severe NCDs in low- and lowermiddle-income countries.

Recommended Actions: • Philanthropies, private sector partners, and other funders should invest in national plans that take an integrated approach to severe NCDs. • Bilateral and multilateral development agencies should prioritize integrated care for people living with severe NCDs in low- and lower-middle-income countries.

• National and local governments should include funding for severe NCDs in their health system budgets.

THE MISSING PIECES

Contents Introduction 2 Background 3 Policy Status 4 Network Positions 5 Call to Action 8 Endnotes 9

COVER PHOTO Fourteen-year-old Sara shares a lighthearted moment with her six-yearold sister, Linda, after their visit to the PEN-Plus clinic in Nhamatanda, Mozambique, where they receive treatment for sickle cell disease.

Tawonashe Mugura, an 11-year-old with both sickle cell disease and type 1 diabetes, receives his care at the PEN-Plus clinic in Masvingo Zimbabwe.

HLM2025 POSITION STATEMENT

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Introduction Eighteen-year-old Farida Aguti (left), and her 22-year-old sister, Rukia Aumo, smile broadly outside the PEN-Plus clinic in Atutur, Uganda, where they receive care for sickle cell disease.

C

HILDREN WITH TYPE 1 DIABETES in rural sub-Saharan Africa often die within

a year of diagnosis, and half of the nearly one thousand babies born with sickle cell disease in Africa each day will not live to see their fifth

birthday. Yet children, adolescents, and young adults who live with such severe noncommunicable diseases in extreme poverty are largely excluded from the global health agenda from the global health agenda.

In the interest of global health equity, the constituent members of the NCDI Poverty Network have produced this Position Statement with the aim of articulating key positions and recommending actions for the inclusion of severe NCDs in global targets, recommendations, and monitoring frameworks.

The Network’s Secretariat drafted the initial statement, and members of the Network’s Steering Committee reviewed it. The Secretariat circulated the draft to all the Network’s institutional and individual members for an open comment-andresponse period, then incorporated members’ feedback into the document.

With this statement, the Network seeks to inform discussions and foster alignment of key actors for the Fourth High-Level Meeting of the United Nations General Assembly on the Prevention and Control of Noncommunicable Diseases (UNHLMNCD) before, during, and after the September 2025 convening.

This statement is also intended to supplement and guide advocacy initiatives by national policymakers, United Nations delegates, professional societies, civil society organizations, and other actors dedicated to reducing suffering and improving the lives of those doubly burdened with NCDs and extreme poverty.

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Background

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EVERE, CHRONIC NONCOMMUNICABLE DISEASES (NCDs) are a diverse

set of conditions that cause premature mortality in children, adolescents, and young adults. Severe NCDs include type 1 diabetes; sickle

cell disease; rheumatic heart disease; congenital disorders (notably heart, neural tube, and gastrointestinal anomalies); childhood and women’s cancers; childhood asthma; and epilepsy.

Michael Mandebvu travels from his village in rural Zimbabwe to the PEN-Plus clinic at the Mashoko Christian Hospital for ongoing treatment of his type 1 diabetes.

Recommended essential packages for Universal Health Coverage include costeffective interventions to prevent, diagnose, and treat these conditions.1 Expert groups in low- and lower-middle-income countries (LLMICs) have prioritized such interventions to promote equitable population health outcomes and avert catastrophic health expenditures.2 Yet neither global targets nor monitoring frameworks for NCDs have included severe ones. External financing support for these conditions is both fragmented and insufficient to support the delivery of high-quality and affordable services, particularly for those living in extreme poverty.3 Severe NCDs are rarely present in national-level action plans, essential health services, or benefits packages in LLMICs.4 Although not explicitly prioritized in the global NCD agenda, severe NCDs are a significant cause of death and disability among populations living in extreme

ZIMBABWE

poverty. Over 60 percent of deaths globally among those aged 5 to 19, for example, are attributable to these conditions.5 Among the poorest billion people globally, NCDs account for 35 percent of allage disability-adjusted life-years and cause nearly 800,000 deaths every year among people under the age of 40.3 These deaths outnumber those from HIV, tuberculosis, and maternal causes combined. Rates of disability-adjusted lifeyears and years of life lost to NCDs are higher for all age groups among the poorest billion than they are for people with other income levels.3 HLM2025 POSITION STATEMENT

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Policy Status Salimatu Sesay, shown with sons Abubakarr (left) and Alusine, relocated her family five hours to Koidu, Sierra Leone, to be close to the PEN-Plus clinic that diagnosed her rheumatic heart disease.

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O ACHIEVE THE SUSTAINABLE DEVELOPMENT GOAL TARGET 3.4, the

WHO Global Action Plan for the Prevention and Control of NCDs, 2013– 2023 (NCD-GAP) calls for a one-third reduction in premature mortality from

NCDs as measured by the probability of dying between the ages of 30 and 70 from any cardiovascular disease, cancer, diabetes, or chronic respiratory disease.6 In 2022, the NCD-GAP global monitoring framework and policy options were updated to include 90 population- and individual-based interventions and 22 overarching or enabling actions in the areas of four risk factors (tobacco, harmful use of alcohol, unhealthy diet, and physical inactivity) and four conditions (cardiovascular diseases, diabetes, chronic respiratory diseases, and cancers).7 This expanded menu of options accompanied the extension of the NCD-GAP to 2030, the Implementation Roadmap 2023–2030, and emerging global strategies and action plans for mental health, air pollution, oral health, diabetes, and childhood cancers.8 The Political Declaration of the Third UNHLM-NCD requested that, by the end of 2024, the United Nations Secretary-General submit to the United Nations General Assembly a report on the progress achieved in implementing the 2011, 2014, and 2018 Political Declarations on NCDs.9 Member States will review this report during the General Assembly in September 2025.

The General Assembly will then develop a modalities resolution that establishes the scope, modalities, format, and organization of the UNHLM-NCD and convenes negotiations among Permanent Missions to adopt an outcomes document. The UNHLM-NCD will provide opportunities for Member States to deliver statements and for Member States, nongovernmental organizations, and private sector entities to engage in roundtable discussions.

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Network Positions

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HE NCDI POVERTY NETWORK’S constituent institutional and individual

Mateus Antonio travels from his tiny village to the PENPlus clinic at Nhamatanda, Mozambique, to receive care for his type 1 diabetes.

members hold the following three positions and advocate for the following dozen actions.

POSITION 1 Vulnerable populations—especially children, adolescents, and young adults living in extreme poverty—carry the heaviest economic and health burdens from severe NCDs and must be prioritized in the global NCD agenda.

THE PROBLEM The current NCD agenda—and the associated “best buys”—are largely focused on lifestyle conditions that ultimately result in morbidity and mortality among older populations. Severe NCDs affecting children, adolescents, and adults younger than 30 are neither adequately recognized nor included in global targets and monitoring frameworks.

RECOMMENDED ACTIONS 1.1

Include younger populations—especially people less than 30 years old—in the NCD Global Monitoring

Framework and associated targets for reductions in premature morbidity and mortality.

1.2

Incorporate severe NCDs into NCD strategies, action plans, and country-level policies and programs related

to reproductive, maternal, neonatal, adolescent, and child health. Severe NCDs include type 1 diabetes; sickle cell disease; rheumatic heart disease; congenital disorders (notably heart, neural tube, and gastrointestinal anomalies); childhood and women’s cancers; childhood asthma; and epilepsy.

1.3

Expand the group of stakeholders participating in the governance of NCD priorities, planning, and advocacy at

the global, regional, national, and local levels to include representation of young people and families affected by severe NCDs.

HLM2025 POSITION STATEMENT

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POSITION 2 Integrated, cost-effective interventions can expand access to care for young people living with severe NCDs in extreme poverty, allow meaningful progress in alleviating the global burden of NCDs, and advance Universal Health Coverage.

THE PROBLEM Cost-effective health system interventions for the screening, diagnosis, treatment, and follow-up of severe NCDs have been proposed and costed under recommendations for essential Universal Health Coverage.1,10 Strategies to integrate these interventions have been developed and broadly

2.2

affordable for people living in low- and lower-middle-income countries.13

versal Health Coverage—for example, the service coverage index for SDG 3.8.1—and health system capacity surveys.

2.3

Incorporate cost-effective interventions for severe NCDs into national health sector plans, essential health

service packages, and health benefits packages.

RECOMMENDED ACTIONS 2.1

tions for severe NCDs in metrics and targets for the achievement of Uni-

endorsed.11,12 Yet health system services for NCDs are still not reliably available, accessible, or

Add coverage of health sector interven-

Include specific cost-effective interventions for severe NCDs in the NCD-GAP and associated

monitoring frameworks as “best buys.”

2.4

Health Coverage but not currently part of the NCD-GAP include the screening and diagnosis of congenital critical heart defects

and health benefits packages to improve accessibility and reduce out-of-pocket expenditures.

2.5

delivered through integrated models of health services, such as the PEN-Plus, a package of interventions endorsed by the WHO African Region to decentralize care for severe NCDs.12

Include severe NCDs in the pre-service training and continuous professional development of health care

workers at the national level.

and the use of hydroxyurea to manage sickle cell disease. These interventions should be

severe NCDs are included in essential medicines lists, national formularies,

Examples of health system interventions for severe NCDs recommended for Universal

Ensure that essential commodities for

2.6

Incorporate indicators for the surveillance of severe NCDs into national health management information

systems, national health surveillance surveys, and other routine data collection.

Within weeks of the February 2024 opening of a PEN-Plus clinic in Nhamatanda, Mozambique, clinicians had made lifesaving diagnoses.

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POSITION 3 Targeted financing mechanisms for the integrated diagnosis and treatment of people living with severe NCDs within public-sector health systems in low- and lower-middle-income countries are crucial for alleviating the burden of NCDs on the world’s most vulnerable people.

THE PROBLEM Current and projected fiscal space in low- and low-

sis and treatment of severe and advanced NCDs within health system budgets.

er-middle-income countries is insufficient to fund required health system interventions to address severe NCDs.3 Previous rounds of UNHLM-NCD have not resulted in significant increases in direct assistance for health in NCDs.14 External financing is needed—particularly in LLMICs—to support integrated health system interventions.15

RECOMMENDED ACTIONS 3.1

National and local governments should include funding for the diagno-

3.2

Private sector partners, philanthropic organizations, and other international and domestic funders should invest in

national plans and strategies for the delivery of integrated health services for severe NCDs within broader health system programming.

3.3

Bilateral and multilateral development agencies should adapt and expand financing mechanisms to include and

prioritize integrated care for people living with severe NCDs in LLMICs.

HLM2025 POSITION STATEMENT

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Call to Action Elisa Edson, an eightyear-old with type 1 diabetes, awaits her appointment at the PEN-Plus clinic in Nhamatanda, Mozambique.

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N THE INTEREST OF GLOBAL HEALTH EQUITY, the constituent members of the NCDI Poverty Network humbly encourage and request the following actions from key stakeholders.

• UN Permanent Delegations, Member

the greatest burden of NCDs in low- and

State delegations to the 80th United

lower-middle-income countries.

Nations General Assembly, and nonstate actors: Review, consider, and advocate for

• Civil society advocates,

the Recommended Actions expressed in

nongovernmental organizations,

this Position Statement during the review

professional societies, other nonstate

process of the WHO Director-General’s

actors, and communities and families

report on progress on UNHLM-NCD Political

affected by severe NCDs: Unite

Declarations, the development process of

strategies, activities, and voices to bring

the UNHLM-NCD “outcomes” document,

attention to the lived experience of people

and the period of open statements during

with severe NCDs in low- and lower-

the UNHLM-NCD in 2025.

middle-income countries.

• Development agencies, private sector

The NCDI Poverty Network urges a robust

partners, philanthropic organizations,

adoption of these efforts to foster an

and other international and domestic

inclusive, integrated movement to advance

funders: Work together to fund proven,

action on severe NCDs beyond the current

integrated, and cost-effective packages

global frameworks. The Network also

of health care services—such as PEN-

encourages partners and collaborators who

Plus—that provide immediate benefit

share this mission to endorse and amplify

to the individuals and families carrying

these Positions and Recommended Actions.

PEN-Plus: The Power of Integration

Referrals, Training, Mentorship

Referrals, Training, Mentorship

The NCDI Poverty Network works with partners worldwide to implement PENPlus, a proven, integrated, and costeffective model of delivery that bridges gaps in health care to provide lifesaving care close to home for people living with severe noncommunicable diseases in lowand lower-middle-income countries.

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Health Center (WHO PEN)

First-Level Hospital (PEN-Plus) Referrals

Referral Hospital

Referrals

Endnotes 1. World Health Organization. UHC Compen-

2.

7. Updated Appendix 3 of the WHO Global

Geneva: World Health Organization; 2020.

dium (Version 1.3). Available from www.

NCD Action Plan 2013–2030 (26 Decem-

Available from https://iris.who.int/bitstream/

who.int/universal-health-coverage/compen-

ber 2022 version). Available from https://

handle/10665/334186/9789240009226-

dium.

cdn.who.int/media/docs/default-source/

NCDI Poverty National Commissions Au-

ncds/mnd/2022-app3-technical-annex-

thorship Group and NCDI Poverty Network Secretariat. Prioritizing Health-Sector Inter-

v26jan2023.pdf.

eng.pdf.

12. WHO Regional Office for Africa. PENPlus—A regional strategy to address severe

8. World Health Organization. Follow-up to

noncommunicable diseases at first-level

ventions for Noncommunicable Diseases

the political declaration of the third high-

referral health facilities. AFR/RC72/4, 4

and Injuries in Low- and Lower-Middle

level meeting of the General Assembly on

July 2022. Available from https://www.

Income Countries: National NCDI Poverty

the prevention and control of non-com-

afro.who.int/sites/default/files/2022-07/

Commissions. Glob Health Sci Pract. 2021

municable diseases. Executive Board

AFR-RC72-4%20PEN-plus%20%20

Sep 30;9(3):626–639.

154th Session, provisional agenda item

a%20regional%20strategy%20to%20

3. Bukhman G, et al. The Lancet NCDI Poverty

7. 5 January 2024. Available from https://

address%20severe%20noncommunica-

Commission: bridging a gap in universal

apps.who.int/gb/ebwha/pdf_files/WHA75/

ble%20diseases%20at%20first-level%20

health coverage for the poorest billion. The

A75_10Add5-en.pdf.

referral%20health%20facilities.pdf.

Lancet. 2020 Oct 3;396(10256):991–1044.

9. United Nations General Assembly, 73rd

13. Gupta N, et al. Availability of equipment

Session. Political declaration of the third

and medications for non-communicable

Disease (NCD) strategic plans in low-and

high-level meeting of the General Assembly

diseases and injuries at public first-referral

lower-middle income Sub-Saharan Africa:

on the prevention and control of non-com-

level hospitals: a cross-sectional analysis

framing and policy response. Global Health

municable diseases (A/RES/73/2). 17 Oc-

of service provision assessments in eight

Action. 2020 Dec 31;13(1):1805165.

tober 2018. Available from https://digitalli-

low-income countries. BMJ Open. 2020 Oct

4. Boudreaux C, et al. Noncommunicable

5.

Liu L, et al. National, regional, and global

brary.un.org/record/1648984?ln=en&v=pdf.

causes of mortality in 5–19-year-olds from

10. Watkins DA, et al. Resource requirements

14. Akselrod S, et al. The impact of UN high-

2000 to 2019: a systematic analysis. Lancet

for essential universal health coverage: a

level meetings on non-communicable

Glob Health. 2022 Mar;10(3):e337–e347.

modelling study based on findings from

disease funding and policy implementation.

6. World Health Organization. Global Action

Disease Control Priorities, 3rd edition. Lan-

10;10(10):e038842.

BMJ Glob Health. 2023 Oct;8(10):e012186.

Plan for the Prevention and Control of NCDs

cet Glob Health. 2020 Jun;8(6):e829-e839.

15. Jamison DT, et al. Global health 2050:

2013-2020. Geneva: World Health Organi-

11. World Health Organization. WHO package

the path to halving premature death

zation; 2013. Available from https://www.

of essential noncommunicable (PEN) dis-

by mid-century. The Lancet. 2024 Oct

who.int/publications/i/item/9789241506236.

ease interventions for primary health care.

19;404(10462):1561–1614.

Caption for Photo Above Ten-year-old John Blessing Sesay visited the hospital often for mysterious swelling and pain, only to return home each time with misdiagnoses and medications that didn’t help. After several years of frustration for his family, John was referred to the PEN-Plus clinic in Kono, Sierra Leone.

There he finally received a definitive diagnosis: nephrotic syndrome. He continues to receive his treatment in the same clinic.

Photo Credits © Ivan Simone Congolo/WHO (front cover and pp. 5 and 8); © Tafadzwa Ufumeli/WHO (pp. 1 and 3); © Badru Katumba/WHO (p. 2 and inside back cover); © Michael Duff/WHO (pp. 4 and 9)

Online Version Visit ncdipoverty.org/hlm2025-position-statement to view and download a digital version of the full Position Statement and one-page summary.

HLM2025 POSITION STATEMENT

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HOPE IN UNITY: Safia Ategei poses for a portrait in front of her home with her son, 14-year-old Abdul Shakur Emong, and 11-year-old Stella Anyait, both of whom receive treatment for sickle cell disease at the PEN-Plus clinic in Atutur, Uganda. Ategai and her husband informally adopted Stella, whose family could not care for her. “I adopted Stella,” Ategai said, “because I was sure she was going to die if I did not do something.”

NCDI POVERTY NETWORK CO-SECRETARIATS Center for Integration Science Universidade Eduardo Mondlane in Global Health Equity Maputo, Mozambique Brigham and Women’s Hospital Boston, Massachusetts, USA www.ncdipoverty.org