Celebrating and accelerating our collective progress in bringing healthcare and hope to people living in extreme poverty with severe, chronic noncommunicable diseases such as type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease
Above: 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. Right: Namazzi Mercy, a medical intern, takes the blood pressure of 11-year-old Lubwama Jackson, who receives treatment for his sickle cell disease at the PEN-Plus clinic in Nakaseke, Uganda.
A PROVEN STRATEGY
PEN-Plus is a package of clinical services that enables frontline providers in low-income health systems to provide care for people living with severe, chronic noncommunicable diseases that require complex and precise ongoing management, such as type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease.
PEN-Plus clinics change the lives of people with these conditions in rural settings. The clinics are decentralized and fully integrated into public health systems, so they bring affordable care closer to home. With well-managed care, patients and their families have more resources, time, energy, and hope to pursue their futures. For families living in deep poverty, the impact is transformative.
THIS IS THE PROMISE OF PEN-PLUS.
Dear Friends,
Four years ago, a coalition of leaders representing nongovernmental organizations, governments, hospitals, philanthropies, universities, and communities joined forces to launch the NCDI Poverty Network. We pledged to work together with lower-income countries to address the unmet burden of severe, childhood-onset noncommunicable diseases (NCDs).
As documented by the Lancet Commission on Reframing NCDs and Injuries for the Poorest Billion, our agenda had historically fallen into a huge gap between the global NCD and child health movements. As a result, the burden of these devastating diseases was still being carried disproportionately by the youngest and poorest of the world.
Our commitment is what we now call the PEN-Plus Partnership, both a rallying cry and a coordinated, multi-sector effort to support countries’ progress in ensuring high-quality, fully integrated, person-centered care for people living with severe, chronic NCDs.
Our shared efforts across the Network to bring PEN-Plus interventions to everyone who needs them have already made rapid progress. Since 2020, the number of countries implementing PEN-Plus has grown from 4 to 15. Already more than 11,000 people are enrolled in PEN-Plus clinics. For nearly all those patients, the clinics represent the first time in their young lives they have had access to sustained, expert care for their condition.
In 2022, all 47 member states of the World Health Organization’s African Region endorsed PEN-Plus as their official strategy for reaching people living with severe NCDs. As early funders—including The Leona M. and
Introduction
Harry B. Helmsley Charitable Trust and Breakthrough T1D—expanded their support, the Network itself grew in reach and influence. Institutions such as UNICEF, the World Diabetes Foundation, St. Jude Children’s Research Hospital, the Foundation for Cardiovascular Care in Africa, and the American Heart Association have since added their support and expertise to this movement.
The strength, success, and sustainability of PEN-Plus interventions lie with country government leadership. At the same time, we recognize that systemic global inertia, human resource constraints, and financing challenges remain threats to meaningful progress toward care for children living with severe NCDs everywhere. These threats are most acute for the poorest countries.
This plan encapsulates the work that we, as nongovernment actors within the NCDI Poverty Network, will do together over the next crucial three years to address these threats and to meet the promise that is PEN-Plus. We invite you to join us in this transformative work.
With gratitude and optimism,
DR.
GENE BUKHMAN AND DR. ANA MOCUMBI
Co-Chairs,
NCDI Poverty Network September 2024
Executive Summary
SEVERE, CHRONIC NONCOMMUNICABLE DISEASES—particularly childhood-onset conditions such as type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease—are largely absent from major global health funding priorities and policies. Yet collectively they represent a devastating burden of disease, particularly for the poorest regions of the world, where diagnosis and ongoing care are difficult to access. When untreated, these conditions are debilitating and deadly, burdening affected families with significant emotional and economic hardship.
The NCDI Poverty Network is leading the charge to change this reality. Over the next three years, we will work with an established coalition of partner organizations and national governments to integrate care for people living with severe NCDs into public health systems. We will accomplish this goal by scaling a package of clinical services called PEN-Plus (the Package of Essential Noncommunicable Disease Interventions – Plus).
Our focus on Equity, Quality, and Financing for PEN-Plus interventions will promote growing efficiencies in care made possible by scale. This focus will also catalyze new, sustainable sources of support for ongoing service delivery.
We are starting this next stage of our journey having already achieved significant progress. Fifteen countries are implementing PEN-Plus, with services now available to a combined catchment area of more than 25 million people in lower-income countries. We are poised to double that impact by 2028, drawing on the momentum made possible by our commitment to patient care, our hardwon experience, and the advocacy we see accelerating across sub-Saharan Africa and South Asia.
Rooted in clinical expertise, research, and community engagement, PEN-Plus is bringing hope to those doubly burdened by severe NCDs and extreme poverty.
We invite you to take action by joining us.
PEN-PLUS PRIORITIES AND TARGETS, 2025–2028
Equity
Health equity for people living with severe noncommunicable diseases is the core premise underpinning PEN-Plus.
Ensure that PEN-Plus services are accessible to a combined catchment area of 51 million people living in low-income countries
Quality
Innovations aimed at solving resource challenges are a critical part of enabling the scaling up of PEN-Plus.
Ensure that 100 percent of established PEN-Plus clinics exceed the minimum performance indicator thresholds for key patient care and operational processes
Financing
Key investments by NCDI Poverty Network partners can catalyze enduring support for PEN-Plus programs.
Unlock an estimated $40 million annually in support of PEN-Plus interventions across public sector, official development assistance, and philanthropic financing streams
Setting the Stage
IN RURAL SUB-SAHARAN AFRICA AND SOUTH ASIA
, regions home to 90 percent of the world’s poorest populations, most people living with severe, chronic NCDs (such as type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease) must travel long distances for many essential healthcare services. Ultimately, hundreds of thousands of people living with these life-threatening conditions—many of them children and adolescents—are left without options for affordable treatment.
As a result, one in two children with type 1 diabetes in rural sub-Saharan Africa dies before diagnosis,1 and in South Asia, people living with type 1 lose an average of 45.2 healthy years from their lifespan.2 Half of the nearly one thousand babies born with sickle cell disease in Africa each day will not live to see their fifth birthday.3 And children with rheumatic heart disease in low- and lower-middle-income countries have a greater than 70 percent chance of dying before the age of 25.4
movements. Accordingly, global NCD and child health policies promoted interventions that many people will need across their life course, such as vaccines, hypertension drugs, education campaigns, and public policies that foster behavior modifications.
PEN-Plus clinics around the world are a practical, sustainable solution to turning around these tragic and ultimately avoidable statistics.
How have these disparities persisted, often flying well below the radar of the global NCD and child health agendas?
As these global health movements gained momentum in the 2010s, multilateral and bilateral success metrics (often tied to funding) were intentionally designed to reach the most people possible, with a focus on overall population health. This approach failed to acknowledge the priority of severe, but individually less common conditions when designing public health
Did You Know?
As an unintended consequence, conditions such as type 1 diabetes, sickle cell disease, and childhood heart disease have become largely invisible on the global stage, underfunded through public financing or public health systems. Vertical programs—many run by disease-specific organizations and accessible nearly exclusively to urban populations—sought to fill this gap. Yet the Lancet Commission on Reframing NCDs and Injuries for the Poorest Billion (the NCDI Poverty Commission) found that, in the absence of integrated care delivery strategies, hundreds of thousands of the world’s children, adolescents, and young adults living in lower-income rural areas would go without lifesaving care for severe conditions that almost always lead to premature death if left untreated.5
Severe noncommunicable diseases were largely unaddressed in global health agendas until just a few years ago. The NCDI Poverty Network is shifting that reality, working alongside governments to leverage a decade of research and clinical innovation as a springboard for action.
The Promise of PEN-Plus
PEN-Plus was born out of this context. In 2006, a group of clinicians began developing a new, integrated care-delivery model for people living with severe, childhood-onset NCDs at two public district hospitals in rural Rwanda, as part of a longterm collaboration between the Ministry of Health and Inshuti Mu Buzima (Partners In Health–Rwanda).
Their guiding thesis was that the most effective and sustainable way to reach all people living with severe NCDs would be to move beyond vertical, centralized, and nongovernmental-organization-led interventions. Instead, healthcare leaders should identify a viable pathway for governments to provide these services through integration and decentralization of care within public health systems. The clinicians built the model as a complement to an earlier strategy: the WHO Package of Essential Noncommunicable (PEN) Disease Interventions. WHO PEN focuses on more common NCDs— such as hypertension, type 2 diabetes, and asthma—at the health center and community levels.
The innovation of PEN-Plus was in the design. The clinicians trained mid-level healthcare providers to diagnose and treat a cluster of severe NCDs that shared certain clinical cadences. This training proved especially crucial in treating type 1 diabetes and childhood heart disease, for which too much or too little medication can mean the difference between life and death.
UGANDA
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.
Poised for Scale
The first PEN-Plus clinics offered a model for how lower-income country health systems could feasibly, safely, and effectively integrate care for patients with severe NCDs into their existing operations. By 2017, the Government of Rwanda had successfully scaled
The PEN-Plus approach also took advantage of shared space, workflow patterns, and training needs. Providers—principally nurses and clinical officers— could be effectively trained in just three months. Soon only two or three of these advanced care professionals were needed to staff each clinic, where they saw 15 to 30 patients a day. Physicians supervised initial consultations and confirmed initial diagnoses, and specialists visited the clinics every month or two to provide ongoing mentorship, consult on more complex cases, and link patients to referral hospitals for more acute specialty interventions, such as cardiac surgery.
Setting the Stage
INDIA
INDIA’S FORAY INTO PEN-PLUS IMPLEMENTATION has begun with Chhattisgarh State in the central part of the country. Sangwari, a not-for-profit organization focused on equity and better healthcare, provides care for people living with severe NCDs in the Surguja district of northern Chhattisgarh.
PEN-Plus clinics to each of its 42 district hospitals, with the original clinics serving as national training sites.
Following the national scale-up in Rwanda, research studies confirmed high levels of feasibility and penetration of PEN-Plus implementation. Three years after the national-level training of nurses, all PEN-Plus clinics were staffed by at least one nurse with advanced training. Overall, the clinics had a high availability of national essential medicines for PEN-Plus conditions and a good adherence to PEN-Plus clinical protocols.6
Research also provided robust evidence of the effectiveness of the PEN-Plus model in addressing patient needs, increasing health workforce capacity, and remaining cost-effective even in low-resource settings.7,8 In addition, a microcosting study from the Burera
district of Rwanda found that the ongoing annual operating costs of PEN-Plus were only $0.23 per capita, suggesting the model’s affordability even for resource-constrained governments.9
Taken together, these results led to pilot programs in Haiti, Malawi, and Liberia that validated the adaptability of the PEN-Plus model to different contexts.10 Based on these experiences, PEN-Plus served as a centerpiece of the Lancet NCDI Poverty Commission Report published in 2020, which presented detailed evidence of the urgent need for these types of services across all lower-income countries.11
Not content with leaving these findings to academia, the report authors joined with representatives of 15 lower-income countries to form the NCDI Poverty Network. This coalition of lower-income country governments and technical, policy, funding, and advocacy partners united in a single cause. The mandate of the Network is to support local leadership, financing infrastructure, and pathways to scale to ensure the PENPlus model reaches everyone, everywhere it is needed.
Achieving this goal is beyond the capacities of any single funder, government, or nongovernmental organization. Rather, it demands a coordinated effort across the value chain—and at local, national, and global levels—to shift entrenched systemic barriers and raise our collective expectations of what is possible.
Over time the Network grew to include hundreds of organizations, a coalition of unprecedented breadth and depth working toward a shared goal: to ensure that the poorest people living with severe NCDs in lower-income countries have access to quality care close to home. This commitment has coalesced into a Network initiative we now call the PEN-Plus Partnership, both a rallying cry and a coordinated, multi-sector effort to support countries’ progress in ensuring high-quality, fully integrated, person-centered care for people living with severe NCDs.
AT THE PEN-PLUS CLINIC In Lisungwi, Malawi, nurse Victor Kaphaso provides seven-year-old Kevini Jamu with medication and specialized care for sickle cell disease.
PEN-PLUS IN ACTION: MALAWI
THE MALAWI MINISTRY of Public Health, in collaboration with Abwenzi Pa Za Umoyo (APZU), a Partners In Health sister nonprofit organization, launched the country’s first PEN-Plus clinic in the southern district of Neno. The clinic was designed to prioritize care for people living with severe, chronic NCDs based on the Malawi NCDI Poverty Commission’s 2018 findings.
Following that early success, the Ministry of Public Health and its implementing partners developed the country’s PENPlus operational plan in 2021, outlining a phased national
expansion to all district hospitals by 2026. The Salima and Karonga district hospitals were chosen for the initial rollout, with APZU facilitating a six-week training in Neno to equip the newer teams with practical expertise in managing severe NCDs. Each hospital assigned one clinical officer and one nurse for the advanced training and then launched a PENPlus clinic upon their completion of the program.
Malawi, which continues to be on track to fulfill its earlier promise, has since joined Rwanda in playing a major leadership role in the ongoing refinement of PEN-Plus.
Setting the Stage
Thanks to the Network’s efforts, in the past three years PEN-Plus has transformed from an effort run by a single nongovernmental organization to a model endorsed by all 47 member states of the WHO African Region, with care being delivered in 15 countries.12 UNICEF’s leadership has played a key role in seeding initiation in Bangladesh and expansion within Malawi, Mozambique, Nepal, and Zimbabwe.
The WHO African Region has also assumed a major leadership role in rolling out technical support for member states to move toward PEN-Plus initiation.13 That work received global interest in 2024, when the WHO African Region hosted the
SIERRA LEONE
FATMATA FOFANAH, a six-year-old with congenital heart disease, lives in Kono, Sierra Leone. With support from the nearby PEN-Plus clinic, her symptoms have eased enough for her to be able to play with her friends again.
first International Conference on PEN-Plus in Africa, which convened representatives from 52 nations.
In 2022–23 alone, more than 400 additional healthcare workers—including nurses and clinical officers—received PEN-Plus training and ongoing mentorship. Even more dramatically, more than 11,000 people with severe, chronic NCDs now receive treatment in PEN-Plus clinics.
In partnership, national and global experts in the type 1 diabetes, sickle cell disease, and childhood heart disease communities are contributing their combined efforts to PEN-Plus patient populations. The Scottish Government has incorporated PEN-Plus into its global health strategy. And U.S. legislators are beginning to engage on this issue by including language about the needs of people living with childhood-onset NCDs in their guidance to USAID.
This swift progress has been driven forward and supported by shifting macro trends in global health capacity and investment. National government leadership and an increasing global focus on health-system-strengthening investments have raised the overall capacity of health systems in lower-income countries to address severe conditions. Many health systems can now provide appropriate referrals for acute episodes, have functioning laboratories and specialized equipment, and employ providers trained in the dosing and management of potentially toxic medications.
Severe NCDs are also broadly recognized as a growing and urgent global priority, opening space to highlight the gap in treatment access and to foster momentum to address that gap through a proven model of care. It is a testament to the progress of decades of investment in broader NCD and childhood public health efforts that PEN-Plus is positioned to scale exponentially. The groundwork has now been laid for a monumental leap forward in access to care for children, adolescents, and adults living with severe NCDs.
PEN-PLUS CONNECTS THE DOTS
THE PEN-PLUS PACKAGE OF CARE fills a major gap in the health system for people living with severe, chronic noncommunicable diseases in low-resource settings. In the absence of PEN-Plus, many people with these diseases remain undiagnosed, and when their condition reaches a dangerously acute stage, they struggle to find a higher level of care. Even if they manage to access care during an emergency, they lack the continuous followup care they will need throughout their lives. With PEN-Plus connecting the dots across levels of care, entire healthcare systems in lower-income countries can
provide lifesaving support to people with severe NCDs. Rural, community-based WHO PEN health centers can refer patients with conditions needing more complex care to PEN-Plus clinics at first-level hospitals, also known as district hospitals. There, with their advanced training, PENPlus providers can quickly recognize the need to send patients with acute cases to referral hospitals for higher levels of care, such as cardiac surgery. Patients who have received heart valve replacements, for example, can then access their followup anticoagulation treatment in the PEN-Plus clinic close to home.
Priorities and Targets 2025–2028
THE RAPID EXPANSION OF PEN-PLUS and its adoption by all the countries in the World Health Organization’s African Region are a testament to the growing demand for— and flexibility of—this model of care.14 Further expansion will require an increasing decentralization of program leadership, a higher level of external financing, and well-managed public financing mechanisms.
This shift also demands that we as member organizations of the NCDI Poverty Network focus our efforts to ensure that PEN-Plus adoption maintains momentum, delivers quality care across healthcare systems, elevates the power and leadership of people living with these conditions in PEN-Plus countries, and reaches even the least-resourced communities.
As more and more countries and institutions adopt the PENPlus model, the NCDI Poverty Network is committed to ensuring these services continue to address the needs of even the poorest populations.
Over the next three years, we will build on our collective achievements to date as a springboard for action to reach new heights, focusing on three priorities to ensure the PEN-Plus promise is realized: Equity, Quality, and Financing.
Priority 1: Equity
2028 Global Target: Ensure that PEN-Plus services are accessible to a combined catchment area of 51 million people living in lower-income countries (2024 baseline: 25 million)
Equity is the driving force behind all we do, just as equity in health outcomes for people living with severe, chronic NCDs across higher-income and lower-income countries is the core premise underpinning PEN-Plus.
The NCDI Poverty Network channels and mobilizes more resources toward countries and districts with the least funding, tailoring country partnerships to accelerate sustainable care provision as quickly as
possible. We work with our government partners to ensure equity of services within populations, using a person-centered approach to enable favorable outcomes for the most vulnerable patients.
Over the next three years, the Network will provide targeted support to healthcare workers and policymakers in the 15 countries with operational PEN-Plus clinics. This support will facilitate the path for the countries to scale services to benefit even more patients. We will also provide technical support to at least 11 new countries in the process of planning for and initiating PEN-Plus services.
PRIORITY 1 STRATEGIES
Provide technical
1a
assistance and financial support to lower-income countries
In countries already implementing PEN-Plus— Bangladesh, Ethiopia, Haiti, India (Chhattisgarh State), Kenya, Liberia, Malawi, Mozambique, Nepal, Rwanda, Sierra Leone, Tanzania, Uganda, Zambia, and Zimbabwe—the NCDI Poverty Network will accompany health sector leaders to address barriers to scale and provide additional capacity-building and financing to facilitate progressive expansion of PEN-Plus services. One area of focus across many countries will be to identify new ways to leverage the PEN-Plus platform to improve the entire continuum
of care, from primary-level early case findings of severe NCDs, to rapid referrals to higher levels of care for needs such as cardiac surgery.
The Network will continue working with the NCDI Poverty Commissions of Afghanistan, Benin, Burkina Faso, Cambodia, Cameroon, the Democratic Republic of the Congo, Ghana, and Nigeria to build on their completed reports, to offer technical support, and to provide catalytic funding to initiate new PEN-Plus services. These commissions are cross-sector committees that identify health system gaps in care for people living with severe NCDs, lead the PEN-Plus planning process, and foster the political will needed to progressively integrate care for severe NCDs.
In collaboration with WHO’s Regional Office for Africa, the Network will also help in-country leaders in Lesotho, Niger, and the Republic of the Congo to convene their own NCDI Poverty Commissions. And, in coordination with UNICEF, the Network will support new NCDI Poverty Commissions in lower-income countries and states in South Asia.
1b
Build peer support networks within PEN-Plus communities
Working closely with local clinical teams, the NCDI Poverty Network will cultivate hyperlocal patient leadership to increase psychosocial support, reduce stigma, and build solidarity across the type 1 diabetes, sickle cell, and childhood heart disease communities. This grassroots-level organizing is crucial for shifting narratives of power and resources from the ground up. To be effective, this work must be decentralized and responsive to a range of contexts while providing tangible value to people living with severe NCDs and their families.15
ZIMBABWE
TAWONASHE MUGURA, an 11-year-old with both sickle cell disease and type 1 diabetes, receives his care at the PEN-Plus clinic at Masvingo General Hospital in southeastern Zimbabwe.
We will be driven by the expertise of disease-specific advocates living and working in PEN-Plus countries to move toward developing a supportive community and collective power for PEN-Plus patients. This work has already started through the Voices for PEN-Plus, a group of advocates from PEN-Plus countries who are using their lived experience with severe NCDs and advocacy expertise to foster connection and solidarity among people with NCDs. In Zimbabwe, for example, one of those advocates is collaborating with SolidarMed, a Swiss nongovernmental orga-
Priorities and Targets
nization, to grow the peer-support infrastructures within communities served by PEN-Plus clinics.
1c
Ensure access to care through robust social support
Social determinants of health are well-documented critical components of good health, especially for people living with chronic disease. For many PEN-Plus patients, especially those living in extreme poverty, the monthly provision of funds for food and transportation can make the difference between sickness and health. In the pursuit of health equity, these are not nice-to-haves but must-haves.
NCDI Poverty Network members will work to ensure PEN-Plus clinics are integrated into existing
UGANDA
ATEGEI SAFIA poses for a portrait in front of her home with 14-year-old Emong Abdul Shakur and 11-year-old Anyait Stella, both of whom receive treatment for sickle cell disease at the PEN-Plus clinic in Atutur, Uganda.
social support frameworks as they accompany government partners through planning and implementation. We will also supplement these frameworks to alleviate additional financial burdens borne by people living with severe NCDs and their families.
Enabling Environment: In addition to aligning with each country’s priority frameworks, the Network’s Equity Priority aligns with Sustainable Development Goal Target 3.4. This goal calls for a reduction by one-third of premature mortality from NCDs by 2030 through the prevention and treatment of NCDs and the promotion of mental health and well-being, as measured against a 2025 baseline. The equity focus also corresponds with the meaningful engagement framework established by the WHO Global Coordination Mechanism.16
The Network follows a Four-Phase Theory of Change, a well-defined sequence of support to accompany country governments in implementing PEN-Plus. This process builds buy-in across critical stakeholders, allows for country-specific customization of PEN-Plus, and facilitates the flow of technical advice, training, and supplemental resources to provide patient care.
The Network’s collective relationships and spheres of influence have fueled the geographic expansion of PEN-Plus, and conversations with key decision-makers in expansion countries are already underway.
Priority 2: Quality
2028 Global Target: Ensure that 100 percent of established PEN-Plus clinics exceed the minimum performance indicator thresholds for key patient care and operational processes (2024 baseline: currently being aggregated)
Multiple countries and stakeholders are now expanding components of PEN-Plus programming na-
PROVEN PATHWAY FOR PEN-PLUS ADAPTATION AND SCALE
Phase 1: Situation Analysis and Priority Setting
Phase 4: National Scale-Up 1 3 2 4
Phase 2: Delivery Model Design
Phase 3: Initial Implementation
FOLLOWING ITS FOUR-PHASE THEORY OF CHANGE, the NCDI Poverty Network approaches PEN-Plus implementation by investing significant time in building the relationships, policy infrastructures, and local expertise needed to ensure PEN-Plus interventions are wholly owned by and integrated within each partner country’s public health system.
These strategies have proved to be adaptive across the 23 countries already engaged in PEN-Plus planning and imple-
mentation. Multiple research studies have validated the framework, and the global type 1 diabetes, sickle cell disease, and childhood heart disease communities support these services, which are in demand by ministries of health.
In addition, philanthropy has proved to be a powerful tool in jumpstarting work on the ground. Once this work has begun, governments become active partners in integrating services for long-term sustainability.
tionally. At the same time, challenges are becoming apparent in supply chains, data systems, and human resources. There is now an increasing need for innovations that can solve these problems at scale.
The Network will play a critical role in both addressing persistent operational roadblocks and creating global standards for incentives, training, and quality of care for people living with severe NCDs. These cross-cutting projects will pave the way for countries to take advantage of economies of scale
made possible by the expansion of PEN-Plus interventions to date.
PRIORITY #2 STRATEGIES
2a
Coordinate nationally and regionally to achieve key performance indicators
Accurate and timely data are essential for both clinical management and operational decision-making.
Priorities and Targets
They are also the basis of research insights and public health surveillance, which can influence resource investments and policy.
The NCDI Poverty Network has developed a standard list of key performance indicators for tracking clinical and operational progress in PEN-Plus clinics, including enrollment and cohort sizes, age and gender breakdowns, and clinical process and outcomes metrics.17 The 15 countries implementing PEN-Plus use standardized data collection tools and reporting forms to track these indicators.
Over the next three years, the Network will continue to make key performance indicators and tools accessible to key decision-makers. The Network will
A PEN-PLUS WORKSHOP IN KATHMANDU in June 2024 brought representatives from all eight countries of UNICEF’s Regional Office for South Asia together with ministry officials, technical partners, and advocates to map out strategies for integrating care for severe NCDs into national health strategies.
also work with partners to establish routine data systems for PEN-Plus, including national health information systems and regional data systems through the WHO African Region and the Africa CDC.
Analyze and tackle supply chain challenges and systemic market failures affecting essential medicines and supplies
2b
Regulatory challenges and dysfunctional international markets—which raise prices and cause stockouts— remain systemic barriers to care for many people living with severe NCDs. Essential medicines and supplies for treating these conditions, such as insulin and hydroxyurea, have been left out of the major global procurement and dissemination mechanisms.
Nongovernment actors are well-positioned to address these structural challenges. In the short term, the NCDI Poverty Network will facilitate meeting immediate needs for medications and supplies, working with partners and suppliers to address both stockouts and sourcing challenges.
In the medium term, Network members will work directly with governments to support national-level solutions. These solutions include the inclusion of medications and supplies for severe NCDs within essential medicines and diagnostics lists, mechanisms to project needed quantities, management strategies that support uninterrupted distribution to health facilities, and policies that eliminate the need for out-of-pocket payments.
Finally, to improve the long-term, underlying global structures that cause downstream issues for countries and clinics, the Network will cultivate partnerships with organizations that bring technical expertise in the supply chain and market access space.
Throughout this work, we will seek to use the growing patient volumes across PEN-Plus countries as a leverage point to expand and accelerate the dis-
DEMOCRATIC
National Scale Subnational Scale Advanced Planning Initiation
semination of the most effective medicines and technologies—such as analogue insulin—to the leastresourced settings.
2c Provide ongoing clinical training, mentorship, and continuing medical education
While countries establish their own training capabilities as part of the initiation of PEN-Plus services, the
PEN-PLUS EXPANSION
This map illustrates countries’ current level of engagement with PEN-Plus strategies through the NCDI Poverty Network. Between 2025 and 2028, the Network will collaborate with these countries and dozens of partner organizations to expand PEN-Plus services and reach our collective global targets.
NCDI Poverty Network’s regional advisors provide ongoing support and accountability for PEN-Plus clinical teams as operations unfold.
The Network also runs working groups organized around expertise on specific diseases, including type 1 diabetes, sickle cell disease, and cardiac conditions. These groups bring together clinicians—from in-country specialists and trainers to frontline providers and implementers—to draft,
Priorities and Targets
MASTER TRAINER Naasson Nduwamungu teaches Laetitia Twizerimana to use point-of-care echocardiography in Rwinkwavu, Rwanda.
refine, and validate training and protocols. These expert groups also identify gaps in PEN-Plus programmatic standards, discuss potential solutions to implementation challenges and advocacy priorities, foster cross-country learning, and share best practices within each clinical discipline.
These touchpoints provide channels for the sharing of decades of accumulated knowledge of these conditions. The touchpoints also nurture a shared culture of person-centered care that is responsive to the lived experience of people with severe NCDs.
Over the next three years, the Network will build on this relationship-driven set of supports to aid countries in developing more formal mechanisms for credentialing and certification for individual clinicians
and clinics, and to provide incentives and recognize excellence in PEN-Plus care.
2d
Reveal new insights through research
Research is essential to understanding and validating the PEN-Plus model, including its quality, efficiency, and acceptability across various settings. The NCDI Poverty Network supports research across four primary domains:
• Scoping reviews to understand the current state of service delivery for severe NCDs in low-resource settings;
• Qualitative interviews with people living with severe NCDs in low-resource settings to better understand their needs and barriers to care;
• Feasibility studies on the introduction of new care modalities, such as the first randomized controlled trial of continuous glucose monitoring in a rural area of a low-income country;18 and
• Longitudinal studies of PEN-Plus services to document their efficacy and acceptability to patients and providers over time.
Enabling Environment: The NCDI Poverty Network coordinates with PEN-Plus countries to ensure their data management systems can monitor care expansion and fidelity to quality standards. The Network encourages the integration of PENPlus indicators into national health information systems, supports WHO initiatives for standardized NCD data reporting, and aligns with the efforts of the Africa CDC to establish stronger regional surveillance mechanisms for NCDs.
Rwanda and Malawi, both of which operate PENPlus on a national scale, are key partners in identi-
fying and guiding next-level inputs in monitoring, evaluation, procurement, training, and credentialing to strengthen national PEN-Plus programs.
In addition, the type 1 diabetes, sickle cell disease, and childhood heart disease communities have recognized supply chain challenges and developed robust policy platforms around access to medicines and supplies.
Priority 3: Financing
2028 Global Target: Unlock an estimated $40 million annually in support of PEN-Plus interventions across public sector, official development assistance, and philanthropic financing streams (2024 baseline: approximately $20 million annually)
By building political will where it is needed most, the NCDI Poverty Network’s nongovernment actors can catalyze direct investments in treatment for people living with severe NCDs and facilitate pathways toward full financing of care delivery through country health budgets and official development assistance.
PRIORITY #3 STRATEGIES
3a
Open new streams of official development aid through coordinated advocacy efforts
The NCDI Poverty Network members will continue to encourage the direct funding of PEN-Plus initiatives and inputs from the U.S. Government through legislative advocacy. We will also engage with bilateral development agencies to seek an increase in the overall volume of official development assistance allocated to caring for people living with severe NCDs in lower-income countries.
3b
Cultivate new opportunities for private philanthropy
The expansion of PEN-Plus is an intersectional effort that touches on philanthropic priorities across a variety of spectrums, offering room for leadership in projects that save lives and streamline systems. The PEN-Plus model can also be an effective tool for moving health systems progressively toward Universal Health Coverage. Catalytic philanthropic investments can unlock new systemic efficiencies, provide proof of concept in specific locations, and deliver immediate relief to people living with severe NCDs in PEN-Plus countries. Over the next three
MOZAMBIQUE
ELISA EDSON, an eight-year-old living with type 1 diabetes, awaits her appointment at the PEN-Plus clinic in Nhamatanda, Mozambique.
Priorities and Targets
years, the Network will collaborate with the philanthropic community to identify areas of mutual interest and high impact that will advance us toward the targets outlined in this plan.
Provide support to PEN-Plus countries in facilitating favorable national-level policies and resource allocations
3c
Drawing on the strength of local disease-specific advocacy organizations operating in PEN-Plus countries, the NCDI Poverty Network will establish an organizing infrastructure and policy agenda in key
SIERRA LEONE
EMMANUEL JOSEPH FOFANAH, a clinical officer at the PEN-Plus clinic in Koidu, Sierra Leone, has undertaken comprehensive training in diagnosing and treating severe noncommunicable diseases.
markets where opportunities exist to influence official development assistance, budget allocations, and development bank initiatives. Through this organizing work, advocates will be positioned to increase the visibility of the needs of people living with severe NCDs and their families as local and national issues.
3d
Focus a global spotlight on the needs of the world’s most vulnerable people
NCDI Poverty Network members will leverage their own global platforms and expertise to keep the needs of people living with severe NCDs front and center in global dialogues. This issue is relevant to policymakers focused on NCDs, child health, climate and vulnerable populations, gender equality, and health system resilience. We will collectively and individually make these connections explicit through bilateral conversations to expand the Network—as well as public dialogue through media and convenings— to grow the global movement, political will, and resources needed to support countries’ integration of care for people living with severe NCDs.
Enabling Environment: While post-COVID, inflationary macroeconomic trends pose threats to major public sector funding streams, the international development field has demonstrated a willingness to embrace and finance increasingly complex development challenges, especially in the healthcare sector. Alongside this trend comes a demand for solutions that tackle complex gaps in care through comprehensive, integrated approaches that have credible pathways to scale and realize systemic efficiencies across health conditions.
This recognition of the power of integration has been mirrored in philanthropic trends, which have shown an increasing appetite for big bets, long investment horizons, and a desire to tackle the most
Qualitative Targets
Qualitative Targets
[Sidebar to come]
SETTING THE STANDARD
THE NCDI POVERTY NETWORK maintains documented clinical tools and programmatic standards that define the PEN-Plus model. These documents are foundational in PEN-Plus program planning and ongoing quality assessment. They outline the diagnostic, treatment, and patient-support services critical to achieving positive outcomes for people living with severe, chronic NCDs. These standards also inform areas for individual clinics and healthcare operations leaders to identify and address gaps in care, such as essential medications and equipment, facility capacity, and care provider competencies. The Network continuously updates these standards and tools based on partner experiences and emerging best practices. The Network also offers the updated versions on its website.
persistent global issues through smart solutions and engaged partnerships.
With its reach currently spanning 23 countries, the NCDI Poverty Network represents multiple avenues to seed, grow, and support PEN-Plus interventions while accruing significant efficiencies in sharing lessons learned and building a global com
munity of practice. The Network’s decentralized, comprehensive approach to addressing the needs of people living with severe NCDs offers multiple entry points for international partners to engage new resources to meet compelling needs while respecting each participating country’s ownership and accountability.
Join Us
NOTHING CHANGES IF NOTHING CHANGES.
In joining their respective strengths, the global partners of the NCDI Poverty Network have already made significant progress in solving one of the world’s starkest health inequities. We invite you to join us in this ambitious work. The PENPlus model represents both an opportunity to dig deep into issues that matter to your mission and an outsized impact as part of the joint work of Network members.
Clinical experts bring their deep knowledge of specific diseases—such as type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease—to refine clinical protocols, identify referral pathways, and train and mentor lower-level providers.
Nongovernmental organizations—especially those that serve as PEN-Plus implementing partners—are critical players in the expansion of PENPlus. They bring operational prowess and creative thinking about how to integrate new clinical capacities into existing public health systems. Their placebased expertise and network of in-country relationships facilitate on-the-ground changes in care and holistic support for patients and their families.
Academic institutions provide the evidence base critical to ensuring quality and action. Care delivery for people living with severe, chronic NCDs in low-resource settings has never been tackled at this scale. Research is essential for understanding and validating the impact of PEN-Plus and related interventions in clinical, economic, and operational terms.
Global policymakers set the standard for determining where global resources should focus to
meet minimum viable standards for human health and thriving. These policymakers are critical to ensuring these decisions address the needs of people living with severe NCDs.
Advocates share their lived experiences with severe NCDs in PEN-Plus countries to motivate, inspire, and raise the bar for all stakeholders. In telling their stories, they provide powerful reminders of the costs of inaction to people living with severe NCDs, their families, and society.
Philanthropists provide catalytic capital to a variety of stakeholders to fund innovative approaches to care, strengthen local institutions critical in care delivery, and meet near-term humanitarian needs. Their networks and influence are valuable assets in change management across stakeholders.
Industry shapes and is shaped by markets. Pharmaceutical and medical-device companies produce essential medicines and supplies. In collaboration with pooled purchasing mechanisms and governments, they also have a critical role to play in reshaping markets to better work for the poorest countries and populations.
Explore how you can leverage your expertise and resources as part of the NCDI Poverty Network: Rachel Gasana, Senior Director of Advancement, rgasana@bwh.harvard.edu
NCDI POVERTY NETWORK members gather on the photo stage at the first International Conference on PEN-Plus in Africa, hosted by the World Health Organization Regional Office for Africa in Dar es Salaam, Tanzania, in April 2024.
A Truly Global Network, Working to Expand PEN-Plus
The NCDI Poverty Network collaborates with and coordinates among influential organizations making significant contributions to advancing PEN-Plus around the world. Major partners include:
Africa CDC
African Society for Pediatric and Adolescent Endocrinology
The Leona M. and Harry B. Helmsley Charitable Trust
ICDDR,B (Bangladesh)
International Pediatric Association
International Society for Pediatric and Adolescent Diabetes
Kathmandu Institute of Child Health (Nepal)
Mass General Brigham (USA)
Mathiwos Wondu – YeEthiopia Cancer Society (Ethiopia)
Mozambique Institute for Health Education and Research (Mozambique)
National Institute for Medical Research (Tanzania)
Non-Communicable Diseases Alliance Kenya
Norwegian Agency for Development Cooperation
Partners In Health
REDAC Network–Sickle Cell Disease Research Network Africa
St. Jude Children’s Research Hospital (USA)
Sangwari (Chhattisgarh State, India)
The Scottish Government
Sickle Africa Data Coordinating Center
Sickle Cell Aid Foundation (Nigeria)
Sickle in Africa Consortium
SolidarMed (Zimbabwe)
The Sonia Nabeta Foundation
Uganda Initiative for Integrated Management of Non-Communicable Diseases
UNICEF
Universidade Eduardo Mondlane (Mozambique)
World Diabetes Foundation
World Health Organization
World Health Organization Regional Office for Africa
About the NCDI Poverty Network
The NCDI Poverty Network works to bring lifesaving care to children, adolescents, and young adults doubly burdened with chronic noncommunicable diseases and extreme poverty. The Network represents a coalition of technical, policy, funding, and advocacy partners collaborating with governments to solve one of the world’s starkest inequities. Each organization brings its expertise to different aspects of the systemic change needed to ensure that people living with severe NCDs can access care close to home.
The Network directly oversees clinical care, capacity-building, and research to advance PEN-Plus through two co-secretariats: the Center for Integration Science in Global Health Equity at Brigham and Women’s Hospital in Boston, Massachusetts, USA, and Universidade Eduardo Mondlane in Maputo, Mozambique.
The Network also coordinates investments in PEN-Plus interventions made independently by partner organizations from around the world. This coordination is managed both formally, through memoranda of understanding and other partnership agreements, and informally, through working groups, technical assistance, and other communication mechanisms. Resources flowing through these multiple organizations, whether financial or in-kind, leverage the infrastructure of public health systems in PEN-Plus countries to move the world collectively toward universal access to care for people living with severe NCDs.
A steering committee governs the Network, providing oversight for its strategy, structure and composition, activities, and partnerships. The committee members represent decades of expertise in management, research, clinical operations, and lived experience with severe, childhood-onset NCDs.
Steering Committee Members
Gene Bukhman, MD, PhD (Co-Chair)
Center for Integration Science in Global Health Equity, Brigham and Women’s Hospital, and Harvard Medical School, USA
Ana Olga Mocumbi, MD, PhD, FESC (Co-Chair)
Division of Noncommunicable Diseases, Instituto Nacional de Saude, and Universidade Eduardo Mondlane, Mozambique
Salmane Ariyoh Amidou, MD, MPH, PhD Ministry of Health, Benin
Mary Amuyunzu-Nyamongo, PhD African Institute for Health and Development, Kenya
Moses Echodu
Uganda Child Cancer Foundation and Voices for PEN-Plus, Uganda
Anu Gomanju, MA, MPH
Kathmandu Institute of Child Health and Voices for PEN-Plus, Nepal
Yogesh Jain, MD
Sangwari, Chhattisgarh, India
Lucy Johnbosco, MA
Diabetes Consciousness for Community and Voices for PEN-Plus, Tanzania
Biraj Karmacharya, MBBS, MSc, PhD
Dhulikhel Hospital and Kathmandu University School of Medical Sciences, Nepal
Aimée Lulebo, MPH, PhD
University of Kinshasa School of Public Health, Democratic Republic of the Congo
Julie Makani, MD, PhD, FRCP
Muhimbili University of Health and Allied Sciences, Tanzania
Jones Masiye, MD, MPH East, Central and Southern Africa Health Community, Tanzania
Eunice Owino
Sickle Cell Uhuru Trust and Voices for PEN-Plus, Kenya
Santigie Sesay, MD Ministry of Health and Sanitation, Sierra Leone
Alfred Edwin Yawson, MD, FWACP, FGCP University of Ghana Medical School, Ghana
ANNA MAZIVA, 74, shares a lighthearted moment with her grandchildren at her homestead in Masvingo, Zimbabwe. Maziva receives treatment at the nearby PEN-Plus clinic for her hypertensive heart disease.
Endnotes
1. Gregory G, Robinson TIG, Linklater SE, et al. Global incidence, prevalence, and mortality of type 1 diabetes in 2021 with projection to 2040: a modelling study. Lancet Diabetes Endocrinol 2022;10(10):741–760.
2. Breakthrough T1D. Type 1 Diabetes Index. (https:// t1dindex.shinyapps.io/dashboard)
3. Modell B and Darlison M. Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ 2008;86(6): 480–487.
4. Hewitson J and Zilla P. Children’s heart disease in sub-Saharan Africa. SA Heart J 2010;7(1):18–29.
5. Bukhman G, Mocumbi AO, Atun R, et al. The Lancet NCDI Poverty Commission: bridging a gap in universal health coverage for the poorest billion. Lancet 2020;396(10256):991–1044.
6. Niyonsenga SP, Park PH, Ngoga G, et al. Implementation outcomes of national decentralization of integrated outpatient services for severe non-communicable diseases to district hospitals in Rwanda. Trop Med Int Health 2021;26(8): 953–61.
7. Eberly LA, Rusingiza E, Park PH, et al. 10-Year Heart Failure Outcomes From Nurse-Driven Clinics in Rural Sub-Saharan Africa. J Am Coll Cardiol 2019;73(8):977–80.
Photo Credits
8. Tapela N, Habineza H, Anoke S, et al. Diabetes in rural Rwanda: high retention and positive outcomes after 24 months of follow-up in the setting of chronic care integration. Int J Diabetes Clin Res 2016;3:1–6.
9. Eberly LA, Rusangwa C, Ng’ang’a L, et al. Cost of integrated chronic care for severe non-communicable diseases at district hospitals in rural Rwanda. BMJ Glob Health 2019;4(3):e001449.
10. Ruderman T, Chibwe E, Boudreaux C, et al. Training mid-level providers to treat severe non-communicable diseases in Neno, Malawi through PEN-Plus strategies. Ann Glob Health 2022;88:69.
11. Gupta N, Mocumbi AO, Arwal S, et al. Prioritizing Health-Sector Interventions for Noncommunicable Diseases and Injuries in Low- and Lower-Middle Income Countries: National NCDI Poverty Commissions. Global Heal Sci Pract 2021;9:3:1–14.
12. World Health Organization. PEN-Plus: A regional strategy to address severe noncommunicable diseases at first-level referral health facilities. AFR/RC72/4. WHO Regional Office for Africa. Brazzaville. 2022.
13. Moeti M, Mocumbi AO, Bukhman G. Why there is new hope for the care of chronic diseases in Africa. BMJ 2023;383:2382.
14. Boudreaux C, Barango P, Adler A, et al. Addressing Severe Chronic NCDs Across Africa: Measuring Demand for the Package of Essential Noncommunicable Disease Interventions-Plus (PEN-Plus). Health Policy Plann 2022;37:452–460.
15. World Health Organization. Framework on integrated, people-centred health services. Report by the Secretariat. 2016.
16. World Health Organization. WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions. 2023.
17. Adler AJ, Wroe E, Atzori A, et al. Protocol for an evaluation of the initiation of an integrated longitudinal outpatient care model for severe chronic non-communicable diseases (PEN-Plus) at secondary care facilities (district hospitals) in 10 lower-income countries. BMJ Open 2024; 14:e074182.
18. Gomber A, Valeta F, Coates MM, et al. Feasibility of continuous glucose monitoring in patients with type 1 diabetes at two district hospitals in Neno, Malawi: a randomised controlled trial. BMJ Open 2024;14:e075554.
Visit the online version of the PEN-Plus Partnership Strategic Plan to gain access to a range of appendices and updated material, including photo captions and credits for the front and back covers.
