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Stronger Together: Network Celebrates Third Anniversary with Videos from PEN-Plus Heroes

Moses Echodu
Moses Echodu, a Voices for Pen-Plus Advocate, contributed a video from Kampala, UGANDA. a FORMER Voices of NCDI Poverty Advocacy Fellow and a childhood cancer survivor, he serves as program director of the Uganda Child Cancer Foundation.

“Hi, all!” Edith Mukantwari says as she beams into the camera. “We are stronger together. Let’s do this!”

And with that greeting, Mukantwari, a Voices for PEN-Plus advocate from Uganda, opens a series of video messages commemorating the NCDI Poverty Network’s third anniversary.

In those videos, Network members offer their takes on a “stronger together” theme in languages ranging from Swahili to Portuguese and from Hindi to Chichewa. Their videos represent eight countries—Kenya, Malawi, Mozambique, Nepal, Tanzania, Uganda, Zambia, and Zimbabwe—that implement PEN-Plus, an integrated care-delivery model for people living with severe, chronic, noncommunicable diseases in settings of extreme poverty.

In his video message, Dr. Gene Bukhman, the Network’s Boston-based co-chair, expresses his gratitude for all who contribute to the Network’s success.

“This December marks the three-year anniversary of the NCDI Poverty Network,” he says. “In that short period of time, what started with the Lancet Commission has grown into a 22-country movement to bridge the gap in health coverage for the world’s most vulnerable. As co-chair of the Network, I’m so grateful to have the opportunity to work with you all. Thank you for your commitment and your friendship.”

Dr. Ana Mocumbi, the Network’s Maputo-based co-chair, concludes the video with an echo of Dr. Bukhman’s gratitude.

“As a global movement, we are not done yet,” she says. “In fact, we are just getting started. We are looking forward to many years of growth and positive outcomes for the communities we serve. We strongly believe that it is possible and that together, we are stronger. Thank you so much.”

 

Uganda Ministry of Health Celebrates PEN-Plus Launch

Voices for PEN-Plus advocates from Uganda (left to right): Moses Echodu, Edith Mukantwari, and Emmanuel Kisembo.

The Uganda Ministry of Health, the local government of the Kumi District, and the Uganda Initiative for Integrated Management of Noncommunicable Diseases hosted a celebration of the launch of PEN-Plus in Uganda on 23 November.

The event marked the commissioning of the PEN-Plus clinic and training center at Atutur General Hospital in eastern Uganda. The country’s other PEN-Plus clinic is part of Nakaseke General Hospital in the Nakaseke District in Central Uganda. The Uganda Initiative for Integrated Management of Noncommunicable Diseases serves as the implementing partner for both clinics.

The celebration was planned in observance of World Diabetes Day, as the newly built facility will provide diagnosis and treatment services for community members with type 1 diabetes and other severe, chronic NCDs, such as sickle cell disease and rheumatic and congenital heart disease. The training center will build the capacity of healthcare personnel to provide quality care to people living with these NCDs.

“This clinic is important because people, like me, who live with type 1 diabetes and other chronic NCDs need reliable care,” said Emmanuel Kisembo, a Voices for PEN-Plus advocate who attendedthe event. “With the clinic also offering peer support and education on type 1 diabetes and other severe NCDs, the community will see better health outcomes.”

Voices for PEN-Plus is an advocacy program of the NCDI Poverty Network.

Edith Mukantwari, another Voices for PEN-Plus advocate from Uganda who attended the celebration, wholeheartedly agreed.

“As a person living with diabetes for the past 18 years, I advocate for people in rural communities to have access to the medicine and care they need,” she said. “PEN-Plus offers care for severe, chronic NCDs at district hospitals for the first time, bringing lifesaving care closer to where people live. I’m so excited that PEN-Plus is in Uganda and look forward to seeing PEN-Plus expanded to other underserved communities.”

Experts Focused on PEN-Plus in Southern Africa During International Conference on Public Health in Africa

Panelists from left to right: Evelyn Chibwe, Bavin Mulenga, Ana Mocumbi, Yolanda Marcelino, Alvern Mutengerere, and Peter Karoli.

The NCDI Poverty Network and the Centre for Infectious Disease Research in Zambia (CIDRZ) hosted a side event, “PEN-Plus Partnership: An NCDI Poverty Network Initiative in Partnership with WHO/AFRO,” on 29 November at the 3rd International Conference on Public Health in Africa, held in Lusaka, Zambia.

During the event, experts from Southern Africa shared their experiences implementing PEN-Plus, a proven model for delivering healthcare to people living with severe, chronic, noncommunicable diseases (NCDs) in resource-limited settings. The event featured two panel discussions in which presenters detailed the national scaleup of PEN-Plus in Malawi as well as PEN-Plus implementation in Mozambique, Tanzania, Zambia, and Zimbabwe.

The first panel discussion focused on national experiences with PEN-Plus implementation. Dr. Yolanda Marcelino, a family doctor who directs the Family Medicine Residency Program at Universidade Eduardo Mondlane in Maputo, shared Mozambique’s experiences in implementing PEN-Plus. During her presentation, she identified several important issues that have arisen during her work as a mentor to providers at the PEN-Plus clinic in Nhamatanda: community screening strategies, the training of healthcare workers, and education about NCDs for teachers and students in the local schools.

Dr. Peter Karoli, a medical research scientist at the National Institute for Medical Research in Dar es Salaam, presented on decentralizing care through mentorship systems. He also discussed Tanzania’s process for determining which conditions to prioritize.

Dr. Alvern Mutengerere—project manager for noncommunicable diseases at SolidarMed, the implementing partner for PEN-Plus in Masvingo, Zimbabwe—shared PEN-Plus implementation successes and challenges in that nation.

“PEN-Plus is bridging a gap in healthcare by making specialized care for severe, chronic conditions accessible,” said Dr. Mutengerere. “PEN-Plus offers individualized education, where the healthcare worker teaches individual patients how to care for themselves. For people living with type 1 diabetes, the PEN-Plus care provider will show them how to inject their insulin and monitor their condition at home.”

During the second panel discussion, Evelyn Chibwe, a nurse specializing in noncommunicable diseases at Abwenzi Pa Za Umoyo (APZU/Partners In Health Malawi), spoke on the success of the PEN-Plus program in Malawi. She noted that Malawi opened its first PEN-Plus clinic in the rural Neno district in 2018 but has since established six more clinics. Her remarks on the powerful impact of health education and mentorship mirrored those of the earlier panelists.

“One of Malawi’s early wins was educating people about noncommunicable diseases, and that momentum allowed us to expand the PEN-Plus program,” Chibwe said. “We’ve trained community health workers to educate the community on noncommunicable conditions, screen community members, and refer them to the clinic if necessary. Another factor in our success has been the involvement of specialists in Malawi, who serve as mentors to clinicians at district hospitals.”

A key theme arose during the second panel: the benefits of the PEN-Plus program’s patient-centric approach. Dr. Bavin Mulenga, a clinical research fellow at CIDRZ, noted that the PEN-Plus clinic in Matero, Zambia, has achieved an 85 percent patient retention rate.

“We developed registers to track missed visits and patients we haven’t been able to follow up with,” said Dr. Mulenga. “We will call a patient to check in when they miss an appointment at the clinic. We will visit them at home if we don’t hear from them to ensure they receive care. Because these are severe, chronic conditions, even after the patient is stabilized, we need to make sure we keep them in care to avoid complications and long-term disabilities.”

Chibwe echoed Dr. Mulenga’s appreciation for putting people living with NCDs first. “A key factor in the success of the PEN-Plus model is patient-centric care,” she said. “PEN-Plus considers each patient individually because each patient has different circumstances and unique comorbidities.”

Professor Fastone Goma, director of the Centre for Primary Care Research at the University of Zambia School of Medicine, and Dr. Ana Mocumbi, co-chair of the NCDI Poverty Network, organized and moderated the event.

“We have heard how the PEN-Plus program differs from country to country,” concluded Dr. Mocumbi, “but in every country, PEN-Plus is built on an agenda of equity.”

Stronger Together: The Power of Patient Organizers in the Fight for Global Health Justice

Eunice Owino, a Voices for PEN-Plus advocate and co-author of “Embodied Contradictions, Structural Power: Patient Organizers in the Movement for Global Health Justice,” works with a support group of people living with sickle cell disease and their caregivers at Moi Teaching and Referral Hospital in Eldoret, Kenya.

“People living with chronic conditions have historically not been considered important decision-makers from a policy perspective,” said Dr. Apoorva Gomber, coauthor of an opinion piece recently published in PLOS Global Public Health. “Our article highlights the absurdity of policymakers making decisions aimed at benefitting people living with a certain disease without consulting anyone who actually lives with that disease.”

Published in November, the piece “Embodied Contradictions, Structural Power: Patient Organizers in the Movement for Global Health Justice” emphasizes patient organizers’ critical role in challenging and transforming the current paradigm of global health governance. “This paradigm,” added Dr. Gomber, who serves as associate advocacy director of the NCDI Poverty Network, “is woefully inadequate in meeting the health needs of most people.”

The article’s authors—global health advocates affiliated with the NCDI Poverty Network—point out the stark inequities and power imbalances rooted within the global health system that undervalues the lives of Indigenous, Black, brown, and Latino people, especially those living in underserved areas in the Global South. The authors deem the current global health governance system inadequate and inequitable for myriad reasons, including:

An insufficient capital allocation for effective caregiving;

The dominance of fragmented caregiving systems provided by global institutional philanthropy that focus only on “cost-effectiveness;” and

Funding limitations that dampen the political aspirations of patients, providers, and planners.

Despite historical attempts to address these issues, the authors contend, transformative efforts have largely failed, leaving significant portions of the global population without access to essential health services. The authors further argue that the efforts of patient organizers—people living with diseases and their allies—who build campaigns to address systemic issues can teach us essential lessons about scaling movements for global health justice.

The article emphasizes the importance of patient organizers in driving what sociologists call embodied health movements.

“People who live with—or ‘embody’—a certain disease share that challenge with others who live with the same disease,” said Dr. Jonathan Shaffer, one of the article’s authors and an assistant professor of sociology at the University of Vermont. “That common problem creates a powerful entry point for the solidarity needed to build a formidable social movement. Embodied social movements use the social reality of shared illness as the basis of organizing potential, whereby communities can work together and challenge the people, the institutions, and the policies that prevent their shared problem from being solved.”

Dr. Gomber noted that the authors are excited by the potential of the NCDI Poverty Network to change the power structure in global health systems by empowering ministries of health to build health systems according to the needs of their citizens and providing the capital to do so. Through advocacy initiatives such as Voices for PEN-Plus, she said, the Network encourages patient organizers to play a more prominent role in regional and global dialogues, expanding conceptions of international solidarity.

“Initiatives like Voices for PEN-Plus challenge the status quo, which has left the voices of people living with severe, chronic conditions out of the policy decisions that affect them,” said Dr. Gomber, who leads the Voices for PEN-Plus program. “Real, meaningful involvement from people living with these conditions that account for cultural and regional nuances will ensure the sustainability of health systems.”

The authors draw on their experiences working alongside patient organizers to outline key lessons for scaling movements for health justice. They underscore the importance of building interdependent teams, using storytelling to increase emotional capacity, and developing shared strategies for change.

“The Voices for PEN-Plus program is a great example of structured organizing,” said Dr. Shaffer. “The NCDI Poverty Network has brought together a team of health advocates from around the world living with NCDs. And each of these advocates has a strong network of local patient activists who are hungry to collaborate with others living with severe, chronic NCDs and advocate for their needs as a collective.”

Dr. Gomber agreed. “Although the Voices for PEN-Plus advocates come from different backgrounds and situations, we share strategic goals,” she said. “Together, they’re learning the basics of community organizing and developing shared stories. They’ll then apply those skills when running centrally coordinated campaigns across each country. It’s a huge opportunity for patient-activist organizing.”

Despite patient organizers’ significant impact on health justice promotion, the article notes challenges such as insufficient resources and a lack of formal support for enhancing skills. The authors implore policymakers and donors to recognize the potential for positive change that patient organizers represent.

“Our article is a call to action,” Dr. Gomber said. “We’re urging stakeholders to reconsider the value of grassroots movements in shaping the future of global health governance and ensuring healthcare as a fundamental human right. We’re stronger together. By organizing across disease communities, we can dismantle oppressive systems and achieve health justice worldwide.”

Network Team Aligns with the Ministry of Health and PEN-Plus Partners in Nepal

Bardiya Hospital is one of two district hospitals that is currently implementing PEN-Plus in Nepal.

A team of NCDI Poverty Network technical experts recently traveled to Nepal to align with partners following the Ministry of Health’s decision to expand PEN-Plus to four more district hospitals. The Network group spent the week collaborating with the Ministry of Health, UNICEF, and the Kathmandu Institute of Children Health (KIOCH) to understand how the success of PEN-Plus initiation in Nepal can be replicated nationally.

The group visited Bardiya Hospital in Lumbini province, one of the sites currently initiating the PEN-Plus program, and Dailekh Hospital in Karnali province, the site of a future PEN-Plus clinic.

Since the PEN-Plus clinics in Bardiya and Damak launched with backing from the Helmsley Charitable Trust, more than 5,000 people living with chronic noncommunicable conditions have received treatment in Nepal. With support from UNICEF, the Ministry of Health will expand the PEN-Plus program to Madhesh, Karnali, Sudurpaschim, and a second site in Lumbini province.

A highlight of the trip, said Dr. Neil Gupta, Network policy director, was meeting those living with severe noncommunicable diseases in Nepal who benefit from PEN-Plus, which provides diagnosis and chronic treatment services close to home.

“We met with children and their families who are affected by sickle cell disease and rheumatic heart disease,” Dr. Gupta said. “We met a 23-year-old living with type 1 diabetes who expressed appreciation for PEN-Plus services. Before PEN-Plus, he had to travel over the border to India to get his insulin. Now, he’s getting insulin in his hometown.”

In 2019, a study by the Nepal Health Research Council found that noncommunicable diseases account for 71 percent of deaths in Nepal. Dr. Bhagawan Koirala, KIOCH chair and co-chair of the Nepal NCDI Poverty Commission, is optimistic that PEN-Plus will reduce the NCD mortality rate in the next five to ten years.

“The case of PEN-Plus initiation and plans for scale-up in Nepal illustrates the power of partnership,” said Dr. Gupta. “The Ministry of Health is leading national and international partners in collaborating to develop and scale up a program that saves the lives of children and young adults.”

The BMJ Highlights Opportunity to Save Lives Through PEN-Plus

Clinicians tour the site of a future PEN-Plus clinic at Atutur Hospital in Uganda.

An opinion article published this month in The BMJ spotlights the PEN-Plus strategy as a new hope for improving chronic disease care in sub-Saharan Africa.

The editorial—coauthored by Dr. Matshidiso Moeti, the World Health Organization’s regional director for Africa, and Drs. Gene Bukhman and Ana Mocumbi, NCDI Poverty Network co-chairs—describes how PEN-Plus can help rectify the long-term healthcare inequities that have resulted in countless avoidable deaths from chronic diseases in sub-Saharan Africa.

“Inequity has always been one of the biggest health concerns in African countries,” write the authors. “For decades, we’ve witnessed the tragedy of African people in low-income countries dying of severe, chronic noncommunicable diseases because they can’t access the care readily available in higher income countries. Fortunately, thanks to a promising new strategy called PEN-Plus, we are on the brink of a change that could save hundreds of thousands of lives—but only if African countries and the world rise to the occasion.”

The authors go on to identify several factors that have characterized previous breakthroughs in healthcare and equity in sub-Saharan Africa: an innovative strategy for delivering care, the political will to scale that strategy, a strong social movement that demands action, and the resulting global solidarity to mobilize resources.

The authors add that PEN-Plus has tremendous promise for being such a breakthrough: “Data have shown a 10-fold expansion in the number of patients receiving care for severe chronic conditions in health systems implementing PEN-Plus.”

PEN-Plus alleviates the burden of noncommunicable diseases (NCDs) in low- and lower-middle-income countries by improving the accessibility and quality of care services. The program provides nurses and other mid-level providers with the training, equipment, and medicines to treat severe chronic conditions in rural communities.

“PEN-Plus decentralizes the expertise and equipment required to treat severe non-communicable diseases and expands the footprint of available care beyond larger hospitals, making care more accessible to people who don’t live in cities,” the authors write in the opinion. “The innovation lies in training the district health workforce to provide essential cardiac, endocrine, and hemoglobinopathy services in smaller clinic settings, lowering geographic barriers to access.”

The opinion notes that Rwanda has been the leader in PEN-Plus implementation, originating the program in three rural hospitals and expanding it to every district hospital in the country. Malawi has since forged ahead with national scale-up. Eight more African countries have established their first PEN-Plus clinics and an additional six have initiated the planning process. So far, the PEN-Plus team has trained 437 clinical staff across 10 countries and 19 clinics to care for over 5,000 patients with severe NCDs, and those numbers will continue to grow.

In 2022, the 47 countries of the World Health Organization’s African region (WHO/AFRO) unanimously voted to adopt the PEN-Plus strategy. A recent grant to WHO/AFRO from the Helmsley Charitable Trust will support ministries of health in 20 countries as they implement PEN-Plus over the next three years. Yet the success of the PEN-Plus model hinges on continued support and collaboration.

The PEN-Plus Partnership is crucial to overcoming barriers and promoting health equity for those living with severe NCDs in Africa by offering technical and financial support for PEN-Plus implementation. Thanks to the leadership and commitment of PEN-Plus Partnership members, including the Helmsley Charitable Trust, WHO/AFRO, UNICEF, and JDRF International, there is a growing movement to decentralize the expertise and equipment required to treat severe noncommunicable diseases.

PEN-Plus Partnership High-Level Advisory Group Convenes in New York City

The High-Level Advisory Group of the PEN-Plus Partnership met in New York City on 19 September to discuss the progress and future of PEN-Plus, an integrated care model that diagnoses and treats severe noncommunicable diseases in rural areas of low- and lower-middle-income countries, where more than 90 percent of the world’s poorest people live.

Participants included NCDI Poverty Network Co-Chairs Gene Bukhman and Ana Mocumbi, as well as global health leaders, funders, and advocates representing Africa CDC, the American Heart Association, the Foundation for Cardiovascular Care in Africa, the Global Sickle Cell Disease Network, the Helmsley Charitable Trust, JDRF International, St. Jude Children’s Research Hospital, Mass General Brigham, Partners In Health, UNICEF, the World Diabetes Foundation, and the World Health Organization Regional Office for Africa.

The presentations and discussions highlighted significant advancements since the group’s last meeting in March and conveyed a deep commitment to expanding PEN-Plus in underserved communities.

Success of PEN-Plus in Mozambique

Dr. Mocumbi reported on the positive impact of PEN-Plus in Mozambique. Since the PEN-Plus clinic in Nhamatanda opened in February 2023, she said, the number of type 1 diabetes patients enrolled has increased significantly, and a type 1 diabetes care club has formed to promote self-management. The PEN-Plus team has conducted the first-ever sickle cell disease screening using point-of-care testing, marking a monumental step forward in tackling the high prevalence of sickle cell disease in northern Mozambique.

The group was heartened to hear that João Mindo, a 14-year-old living with rheumatic heart disease in a rural community outside of Nhamatanda, has improved significantly since a successful mitral valve repair surgery in Maputo. When the High-Level Advisory Group first met João during a visit to Mozambique in March, he had been recently diagnosed with rheumatic heart disease after years of debilitating symptoms, including difficulty breathing.

The PEN-Plus clinic in Nhamatanda made logistical arrangements for João’s surgery, including travel to Maputo for him and his brother. João has recovered well and will receive long-term support from the PEN-Plus clinic, including money to travel to the clinic for monthly checkups, a cellphone to enable follow-up calls with his care providers, and anticoagulation medicine.

Progress of PEN-Plus Implementation and Infrastructure

Emily Wroe, program director for the NCDI Poverty Network, shared insights on the status of PEN-Plus implementation across sub-Saharan Africa and South Asia. She gave an overview of PEN-Plus infrastructure, including clinic construction and renovation to enhance on-site diagnostic capabilities. Dr. Wroe also reported that the PEN-Plus team has already trained 437 clinical staff across ten countries and 19 clinics to care for more than 5,000 patients with severe NCDs.

PEN-Plus Advocacy and the Strategic Plan for 2025-2028  

Network Associate Advocacy Director Apoorva Gomber highlighted the advocacy goals for PEN-Plus, which are focused on building a global solidarity movement, engaging people living with NCDs in underserved communities, and advocating for international funding.

Dr. Bukhman concluded the presentations with an overview of the strategic plan for PEN-Plus expansion. Goals include initiation and expansion in multiple countries to serve at least 15,000 new patients, ongoing collaboration with the High-Level Advisory Group and PEN-Plus implementers, and cultivation of U.S. congressional support.

The High-Level Advisory Group will meet again during the WHO/AFRO Regional PEN-Plus Summit in Dar es Salaam, Tanzania, to be held April 23–25, 2024.

The PEN-Plus Partnership continues to make strides in addressing severe NCDs in low and middle-income countries with the support of global leaders and Network partners committed to advocating for and improving healthcare delivery to those in need.