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Steering Committee Advances Strategies for PEN-Plus Implementation

Members of the NCDI Poverty Network’s Steering Committee convened on 8 November for their ninth meeting.

The event included presentations on the progress of the Network’s initiatives from the co-secretariat teams based at Universidade Eduardo Mondlane and the Center for Integration Science in Global Health Equity. The Maputo co-secretariat is forming a Southern Africa Regional Advisory Committee, for example, and the Boston co-secretariat is recruiting for roles in partnership building, clinical advising, and monitoring and evaluation.

Co-secretariat members also noted that representatives from WHO/AFRO, WHO country offices, the WHO integrated service delivery unit, and the WHO health promotion team met in Ghana in July to discuss PEN-Plus implementation. In September, members of the High-Level Advisory Group met in New York City to discuss PEN-Plus expansion.

In addition, several members of the Boston co-secretariat offered phase-specific updates.

  • Phase I: Emmanuel Mensah, managing director of the Center for Integration Science, highlighted a two-day priority-setting workshop in the Democratic Republic of the Congo with the Ministry of Health. He also noted that Cameroon and Nigeria have incorporated patient voices into their reports. He added that the Network hosts learning workshops to educate national commission members on the analytical framework, the burden of disease, and priority setting for NCDs.

  • Phase II: Chantelle Boudreaux, associate director for integration research at the Center for Integration Science, provided an overview of three initiatives that partner countries are undertaking to implement priority health services: Ethiopia, Kenya, and Nepal are conducting care team assessments; Cameroon, Mozambique, and Nigeria are designing care teams for outpatient and emergency NCD care; and Ethiopia, Ghana, Nepal, and Tanzania are designing and integrating essential NCD interventions in national health systems.

  • Phase III: Emily Wroe, program director at the Center for Integration Science, reviewed the results of the midterm risk assessment and discussed the development of a document on PEN-Plus essential programmatic standards, which will be completed by the end of November.

  • Phase IV: Apoorva Gomber, associate director of advocacy at the Center for Integration Science, presented the Network’s advocacy goals for 2023–2025. She also detailed the Voices for PEN-Plus advocacy program launch and the Network’s legislative advocacy initiative. 

Among the many topics they tackled, Steering Committee members discussed the International Conference on PEN-Plus, which will be held in Dar es Salaam on April 23–25, 2024. Individual members offered several recommendations to guide the conference, including:

  • Focusing on coalition-building across the type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease communities;

  • Incorporating community engagement, retention, and social support strategies;

  • Facilitating the meaningful involvement of patient advocates and civil society representatives; and

  • Involving regional bodies such as the East, Central, and Southern African Health Community; the Southern African Development Community; and the Western African Health Organization.

Additionally, committee members agreed to increase communication with ministries of health in countries implementing PEN-Plus to enhance their policy-level commitments and program sustainability.

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.

 

Network Celebrates Launch of Voices for PEN-Plus

Anu Gomanju, a person living with rheumatic heart disease in Nepal, is one of eight members of Voices for PEN-Plus, a new advocacy initiative of the NCDI Poverty Network.

“We know what is best for us,” said Anu Gomanju, a person living with rheumatic heart disease in Nepal. “That’s why our needs and voices need to be prioritized.”

Gomanju made that statement in late September, during the online launch event for Voices for PEN-Plus. Sponsored by the NCDI Poverty Network, Voices for PEN-Plus brings together people living with severe, chronic, noncommunicable conditions to advocate for PEN-Plus implementation in sub-Saharan Africa and South Asia.

Gomanju is one of eight Voices for PEN-Plus advocates from low-income countries seeking to build solidarity across diseases. Each advocate lives with a severe, chronic noncommunicable condition—including type 1 diabetes, sickle cell disease, and rheumatic heart disease—and is from a PEN-Plus country. Riva Greenberg, the author of three books on flourishing with type 1 diabetes, serves as an advocacy mentor to the group.

Although the advocates live in disparate countries, they have faced common challenges, including difficulty accessing medicine, stigmatization, and a lack of education about their condition.

“You all represent a voice, a story, and a hope for a better tomorrow,” Dr. Apoorva Gomber, associate advocacy director for the NCDI Poverty Network, told the group during the launch event. “There’s no better way to advocate for health systems that meet our needs than as an organized coalition. When you learn from others living with noncommunicable conditions, you become an advocate not only for your disease but also for theirs. PEN-Plus serves multiple disease communities, and we support each other too.”

The launch event introduced the Voices for PEN-Plus advocates to the Network’s current advocacy goals and tactics. The group will meet monthly over the next six months to collaborate on advocacy initiatives that include:

·      discussing and informing the strategy and direction of the NCDI Poverty Network;

·      drafting a Language Matters document that guides positive communication with people living with severe, chronic NCDs;

·      creating social media campaigns to promote awareness of severe, chronic NCDs;

·      developing a call to action to encourage U.S. legislators to act on NCDs;

·      building storytelling capacity with other organizers to create a framework for action;

·      supporting virtual and in-person representation at global health events and conferences;

·      collaborating and providing feedback to each other on individual advocacy projects; and

·      creating an advocacy handbook and resource hub.

“I’m looking forward to hearing the group’s insights,” said Dr. Gene Bukhman, co-chair of the Network. “The voices of those with lived experiences are paramount to moving our mission forward.”

Meet the Voices for PEN-Plus Advocates

Advocates

Tinotenda Dzikiti lives with type 1 diabetes in Zimbabwe. He graduated cum laude from Bindura University of Science Education with a bachelor of commerce honors degree in financial intelligence. He is a certified diabetes educator and a global advocate for T1International. He serves as the co-chair of the Membership Committee and co-lead for the special interest group “Diabetes in Africa and Limited Resource Settings” for the International Society for Pediatric and Adolescent Diabetes (ISPAD). He is a Young Leader in Diabetes and Africa Representative-Elect for the International Diabetes Federation and an ambassador for the Zimbabwe Diabetes Association.

Moses Echodu, a childhood cancer survivor from Kampala, Uganda, serves as program director of the Uganda Child Cancer Foundation. While serving as a Voices of NCDI Poverty Advocacy Fellow, Echodu spearheaded outreach activities with youth in Uganda to build awareness for cancer and other severe NCDs through printed educational materials, radio shows, and screening campaigns. He has spent the past eight years building cancer awareness among young people and advocating for policies to improve access to cancer services for young people through his 3C program, which engages youth in secondary schools.

Anu Gomanju is a person living with rheumatic heart disease, an NCD advocate, and a registered public health professional. She holds a master of public health in global health from Thammasat University. During her tenure as a Voices of NCDI Poverty Advocacy Fellow, Gomanju used social media to establish an advocacy group and network for people living with rheumatic heart disease in Nepal, the first of its kind in the region. She continues to work closely with the Nepal NCDI Poverty Commission and to provide insight as a person living with rheumatic heart disease.

Emmanuel Kisembo, a type 1 diabetes advocate from Kampala, Uganda, is a special initiatives programs manager at Sonia Nabeta Foundation, which seeks to alleviate the hefty cost of treatment for low-income children with type 1 diabetes in Africa. Kisembo is also the author of Embracing the Pricks: The Journey to Acceptance Through the Lens of an African Type 1 Diabetes Warrior.

Edith Mukantwari is a public health activist, a nutritionist, and a diabetes educator from Uganda. She is president of the Africa Diabetes Alliance, an organization in Uganda that seeks to encourage diabetes education and bridge the information gap for people living with diabetes.

Ruth Ngwaro was born with a congenital heart defect and has had four open heart surgeries since the age of three. Her most recent operation was on World Heart Day (September 29) 2020. At the age of six, she became an ambassador for children like her, reciting poems at events to increase awareness about congenital heart disease and heart health. In Kenya, her country of birth, she became known for her continuous advocacy work at nonprofit organizations, resulting in partnerships with local governments and the private sector as well as supporting people living with heart disease. She holds a degree in microbiology and lives in Boston, where she works as a personal care assistant.

Eunice Owino is a sickle cell disease advocate and founder of the Sickle Cell Uhuru Trust, an organization working to build awareness about sickle cell disease, teach management of the disease, and emphasize the importance of care for people living with sickle cell disease in Kenya and around the world. Her work as an NCDI Poverty Advocacy Fellow focused on building awareness of sickle cell disease in Kenya and other areas of the world where the disease is prevalent. She is the regional coordinator for the African Congress on Sickle Cell Disease and serves on the Board of Directors for the Sickle Cell Federation of Kenya. She also represents Kenya in the East Africa Sickle Cell Alliance.

Arafa Said was diagnosed with sickle cell disease at eight months old. Since then, she has been fighting through all life challenges with this inherited condition. For the past decade, she has devoted herself to improving the lives of her fellow Tanzanians with sickle cell and other chronic diseases. She founded the Sickle Cell Disease Patients Community of Tanzania, the first sickle cell advocacy organization in Tanzania. She is also the Tanzanian representative for the East African Sickle Cell Alliance. She provides social support, public advocacy, and education for people living with sickle cell disease nationwide through these organizations. She also aims to help all people living with sickle cell disease obtain health insurance and to ensure stable access to quality healthcare in Tanzania.

Advocacy Mentor

Riva Greenberg, a leading global advocate for people living with type 1 diabetes, is devoted to helping people with diabetes live an exceptional life, not despite having diabetes but because of it. A highly requested speaker and trainer, Greenberg shares an innovative treatment approach with health professionals called the Flourishing Treatment Approach. She is a trusted advisor to diabetes businesses, organizations, and pharmaceutical companies. She was the patient-expert for QuantiaMD’s “Ask the Patient” series; co-created a webinar series on Preventing Diabetes for Wellcoaches; and is a certified Wellcoaches health coach and certified teacher of the Stanford Diabetes Self-Management program. She is the author of three books: Diabetes Do’s & How-To’s, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It, and The ABC’s of Loving Yourself With Diabetes. Greenberg was featured in “My Sweet Life: Successful Women With Diabetes.” She was a contributor to the Huffington Post and blogs on her website, DiabetesStories.com. She received the International Diabetes Federation Lecture Award for her education and advocacy in 2015.


To learn about opportunities to collaborate with Voices for PEN-Plus, contact Apoorva Gomber at agomber@bwh.harvard.edu.

João Mindo: A PEN-Plus Success Story

For three years, João Mindo had difficulty walking, eating, and even breathing. It wasn’t until a PEN-Plus clinic opened in rural Mozambique that he received his diagnosis: rheumatic heart disease. Following mitral valve repair surgery in Maputo, the 14-year-old (pictured above with his older brother, Lazaro) now receives care close to home.

“When I got sick, I couldn’t play. My heart would beat so fast. Since my heart surgery, I’m fine, and I can run and play.”

Meet João Mindo, a 14-year-old living with rheumatic heart disease in a rural area of northern Mozambique. João lives with his widowed mother and three siblings in a home with neither electricity nor plumbing. The family’s only means of support is his mother’s small-scale farming.

João’s health problems began in 2020. For three long years, he had difficulty walking, eating, and even breathing. It wasn’t until February 2023, when a PEN-Plus clinic opened at Nhamatanda Rural Hospital, 20 kilometers away from his home, that João finally received a diagnosis: rheumatic heart disease.

“We were told he needed surgery for his heart condition,” said João’s older brother, Lazaro. “My mother was heartbroken João had received such a serious diagnosis, and she had difficulty accepting that he needed surgery. I told her we had to pursue treatment for him.”

The severity of his condition meant João would have to travel 800 kilometers to the south, where he could undergo mitral valve repair surgery at ICOR (Heart Institute) in the capital city of Maputo.

Complicating matters was the fact that João’s family had lost their identification papers in 2019, when cyclone Idai devastated the area. Without those papers, João could not travel to Maputo.

“The lack of resources in the area often means we have to solve one problem before we can confront the next,” said Dr. Ana Mocumbi, a cardiologist who co-chairs the NCDI Poverty Network. “João didn’t have the identification papers required to fly in Mozambique, so we had to make him exist on paper before he could travel for his surgery.”

The PEN-Plus Partnership provided all the necessary support for João to undergo surgery, which included help in obtaining identification papers, travel arrangements to Maputo, and negotiating an agreement with Lazaro’s school to ensure he could continue his studies while accompanying his brother to Maputo.

João and Lazaro stayed in the capital for three months, during which João underwent a successful surgery and recovered well. The brothers are now back in their hometown with their mother.

Access to essential medicines is often a significant health barrier in rural Mozambique. The PEN-Plus program ensures that João has consistent access to lifesaving chronic care for his condition, including specialized treatment and medicine. This has not only improved his health but also alleviated his family’s financial pressures.

“I will forever be grateful that everything went well,” Lazaro said, “and I expect João to have a healthy life.”

In rural Mozambique, where noncommunicable diseases often go undiagnosed and untreated, João’s story highlights the importance of specialized treatment, access to lifesaving medication, and financial support to ensure that young people like João can defy the odds.

Written by Ivanilson Abilio, membership and engagement manager of the Maputo Co-secretariat of the NCDI Poverty Network.

Undaunted Spirit Despite Dual Diagnoses

In June 2023, Tawonashe Mugura, a fifth grader with sickle cell disease and type 1 diabetes, expressed his gratitude for Solidarmed-run PEN-Plus clinic at Masvingo General Hospital. Photo ©ATM.

As an infant, Tawonashe Mugura was always in and out of the hospital. Sometimes, he had difficulty breathing; other times, he was jaundiced. His body pains were so severe he cried constantly. The provincial hospital in Masvingo, Zimbabwe, treated his symptoms, but he still lacked a diagnosis.

Then, when he was nine months old, an aunt provided a critical clue: Three of her grandfather’s siblings had died of sickle cell disease. A test confirmed Tawonashe’s diagnosis.

Treatment for sickle cell reduced both Tawonashe’s crying bouts and hospitalizations. The hospital pharmacy did not have the needed medication, though, so his mother, a university assistant administrator, and his father, a primary schoolteacher, bought it from private pharmacies. The more than US$30 they spent monthly on medication alone represented more than a tenth of their combined income.

“The hospital bills and medication costs meant we barely had enough food for the family,” said his mother. “We couldn’t afford to pay for Tawonashe’s medical expenses and sustain the family.”

Tawonashe’s parents occasionally missed doses or underdosed their son to stretch the medicine for a few more days. He would be hospitalized several times a year with severe joint pain, difficulty breathing, abdominal pain, anemia, and chest pain. Those visits usually corresponded with the times he lacked adequate dosing.

In 2022, after presenting to the hospital with diabetic ketoacidosis, a potentially fatal condition, Tawonashe received a second diagnosis: type 1 diabetes. Fortunately, with insulin treatment, he was able to stabilize.

“Sometimes Tawonashe gets angry when his friends ask him why he goes to the hospital so often,” his mother said. “One question that broke me was when he asked why he was sick, yet his siblings and friends were always healthy. Apart from those moments, though, he’s positive and happy.”

In June 2023, Tawonashe enrolled in the PEN-Plus clinic at Masvingo Provincial Hospital. The clinic provides him with continuous pharmaceutical support, including hydroxyurea for his sickle cell disease, insulin for his diabetes, and pain medications. The nurses educate him about his illnesses, and he receives free routine laboratory and radiology tests.

“With this treatment, we hope to reduce both his sickle cell complications and his hospitalizations in general,” said Dr. Alvern Mutengerere, project manager for noncommunicable diseases at SolidarMed, the implementing partner for the PEN-Plus clinic in Masvingo. “Tawonashe is exactly the kind of patient for whom PEN-Plus was designed.”

PEN-Plus, an integrated healthcare delivery model, was originally designed in Rwanda in 2006 to provide lifesaving care to children and young adults living with severe, chronic noncommunicable diseases in extreme poverty. Nearly two dozen countries are now pursuing the model in collaboration with the NCDI Poverty Network. In addition, 47 member states of the World Health Organization’s African region have adopted it as their official strategy for treating people with severe NCDs.

“The PEN-Plus clinic has been a silver lining in our lives,” said Tawonashe’s mother, Stella Mugura. “I feel we got another chance to breathe. And I am thankful for our education about sickle cell; I thought it was a death sentence, but now we have hope.”

Tawonashe’s mother added that the clinic has relieved their financial pressures.

“PEN-Plus has lifted a huge burden from us,” she said. “The extended help from SolidarMed and the clinic reminds me of the meaning of my son’s name. In English, Tawonashe means ‘we have seen God.’ Indeed, we have seen God in our lives; thank you.”

Tawonashe—now ten years old and attending fifth grade—echoed his mother’s gratitude during a recent conversation at Masvingo Provincial Hospital, adding, “My dream of becoming a doctor will succeed because of PEN-Plus.”

Ten-year-old Tawonashe Mugura joins his mother, Stella, in talking about his dual diagnoses of sickle cell disease and type 1 diabetes.

Center for Integration Science Participates in Africa CDC Workshop on Noncommunicable Diseases

The Center for Integration Science in Global Health Equity participated in an Africa CDC/African Union workshop, “Non-Communicable Diseases, Injuries, and Mental Health Surveillance: Situational Analysis and Peer Learning,”from 24 to 28July in Ghana.

Ministry of Health leaders in noncommunicable diseases and injuries (NCDI), mental health (MH) and surveillance from six countries¬—the Democratic Republic of Congo, Ghana, Morocco, Nigeria, Senegal, and Sierra Leone—attended the meeting.

Africa CDC/African Union is working to create a guidance document for assessing, developing, and implementing surveillance of noncommunicable diseases and injuries and mental health (NCDI/MH) for the continent. The Ghana workshop was the second one Africa CDC/African Union hosted to inform the development of the guidance document; the earlier one was held in Zambia.

Dr. Emmanuel Mensah, managing director of the Center for Integration Science and the West Africa regional advisor for the NCDI Poverty Network, helped facilitate the Ghana workshop in his role as a member of the high-level advisory committee on NCDI/MH for Africa CDC/African Union . He noted that the workshop was designed to:
• enable country-specific insights into the strengths and weaknesses of NCDI and mental health national surveillance activities;
• foster peer learning on NCDI and mental health surveillance among countries;
• support countries in their development of action points to strengthen the integration of national NCDI and mental health surveillance;
• cultivate awareness and collaboration among stakeholders to strengthen NCDI and mental health surveillance; and
• help boost the implementation of relevant infrastructure and governance for NCDI and mental health surveillance.

As part of the workshop, member state representatives completed a self-assessment of their surveillance program using tools that the Africa CDC/African Union NCDI team developed in collaboration with the Robert Koch Institute in Germany. Participants also visited the Center for Health Information Management System at the Ghana Health Service and the Accra Psychiatric Hospital.

“Public health surveillance is essential to monitor the burden of NCDIs,” said Dr. Mensah. “Such surveillance provides information required to help policymakers, researchers, and implementers make relevant decisions. Noncommunicable diseases and intervention surveillance across Africa Union member states has been challenging because of a lack of prioritization, inadequate funding, a shortage of trained personnel, and difficulty integrating with current health information systems.”

“This work will give member states the necessary tools to build and sustain efficient surveillance systems for NCDIs and mental health,” Dr. Mensah concluded.

Center for Integration Science and WHO Regional Office for Africa Plan Joint Collaboration to Achieve PEN-Plus Regional Implementation Targets

The WHO Regional Office for Africa (WHO/AFRO) and the NCDI Poverty Network met in Accra, Ghana, from 17 to 19 July to discuss the region’s PEN-Plus implementation strategy.

In 2022, to alleviate the NCD burden in sub-Saharan Africa, WHO/AFRO adopted a landmark resolution to implement PEN-Plus, which provides diagnosis and treatment services at first-level referral hospitals for people living with severe NCDs, including type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease.

The meeting aligned key partners on the project implementation plan, which lays out principal benchmarks and goals. In attendance were leadership from the NCDI Poverty Network Secretariat (an initiative of the CIS), the PEN-Plus project manager for WHO/AFRO, WHO/AFRO technical leads, and representatives from WHO country offices in the region, including Ghana and Ethiopia.

The meeting agenda included a site visit to a first-level referral hospital and a district hospital in Ghana to understand better how patients with severe NCDIs are managed.

“Site visits and discussions with hospital leadership, care providers, and patients help to contextualize the PEN-Plus implementation strategy and understand the expected nuances in different countries,” said Dr. Emmanuel Mensah, managing director of the Center for Integration Science in Global Health Equity. “It was helpful for the team to see how patients with these severe NCDs are managed at various levels of care in Ghana.”

With a recent $9 million grant from the Helmsley Charitable Trust, WHO/AFRO is working to advance the implementation of PEN-Plus by:

  • Developing communication materials in multiple languages to garner country support;
  • Adapting NCD assessments and evidence-based tools for district-level healthcare facilities;
  • Exploring sustainable financing frameworks to strengthen local governance;
  • Integrating NCD care protocols to enable consistent and high-quality healthcare; and
  • Designing an evaluation framework, including measurable key performance indicators.

As the WHO Collaborating Centre on Integration Science and Service Delivery, the Center for Integration Science in Global Health Equity will continue to work closely with WHO/AFRO to support member states on engagement, assessment, planning, and implementation for PEN-Plus. The center also serves as the Boston co-secretariat of the NCDI Poverty Network.

“The center’s collaboration with WHO is bolstering the fight against type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease,” said Dr. Gene Bukhman, executive director of the Center for Integration Science and a co-chair of the NCDI Poverty Network. “Access to PEN-Plus services will bridge the treatment gap across the region for people living with severe, chronic NCDs.”

Helmsley Charitable Trust Grants $9 Million to WHO Regional Office for Africa for Severe Noncommunicable Diseases

Efforts to expand PEN-Plus across sub-Saharan Africa received a major boost when the Leona M. and Harry B. Helmsley Charitable Trust announced a $9 million grant to the World Health Organization Regional Office for Africa to expand care for people living with severe noncommunicable diseases (NCDs).

“Chronic diseases are projected to become the leading cause of death in sub-Saharan Africa by 2030,” said Dr. Matshidiso Moeti, WHO Regional Director for Africa. “To lower the burden, we’re working with countries to enhance the availability and quality of care for severe, chronic diseases at district hospitals through the PEN-Plus strategy.”

Following a landmark 2022 resolution to curb chronic diseases, WHO in Africa is leading the continent-wide implementation of PEN-Plus, a model that trains providers in remote communities to diagnose and treat a suite of severe NCDs, including type 1 diabetes, rheumatic and congenital heart disease, and sickle cell disease. Building on the model’s current success, the grant will support the efforts of WHO to scale and spread PEN-Plus to 20 selected African countries, with a goal of reducing deaths from severe NCDs by 15 percent within three years of implementation.

“Chronic diseases are projected to become the leading cause of death in sub-Saharan Africa by 2030,” said Dr. Matshidiso Moeti, WHO regional director for Africa. “To lower the burden, we’re working with countries to enhance the availability and quality of care for severe chronic diseases at district hospitals through the PEN-Plus strategy. The support from Helmsley will be key in the region’s efforts to bridge the gap in access to treatment and care and help reduce premature deaths from these diseases.”

With Helmsley’s funding, the WHO Regional Office for Africa will advance the implementation of PEN-Plus by:

  • Developing communication materials in multiple languages to garner country support;

  • Adapting NCD assessments and evidence-based tools for district-level healthcare facilities;

  • Exploring sustainable financing frameworks to strengthen local governance;

  • Integrating NCD care protocols to enable consistent and high-quality healthcare; and

  • Designing an evaluation framework, including measurable key performance indicators.

The Helmsley Charitable Trust has supported the development of PEN-Plus since 2014 through Partners In Health, the NCDI Poverty Network, and the Center for Integration Science in Global Health Equity at Brigham and Women’s Hospital. As the world’s largest private philanthropic funder of type 1 diabetes programs, Helmsley is committed to shaping markets for essential medicines and expanding integrated systems of care through its Global Access portfolio.

“At Helmsley, we build partnerships that center people — not diseases — and that strengthen whole health ecosystems,” said Gina Agiostratidou, program director for type 1 diabetes at the Helmsley Charitable Trust. “WHO Africa’s diverse NCD programming and regional expertise make them an ideal partner in our mission to ensure that everyone with a severe NCD has access to quality care and support — no matter where they call home.”

The PEN-Plus model complements the WHO Package of Essential Noncommunicable (PEN) Disease Interventions for Primary Health Care by equipping nurses and mid-level providers with the skills to effectively treat severe chronic NCDs and ensuring the availability of lifesaving medicines and supplies. In collaboration with Rwanda’s Ministry of Health, Partners In Health first introduced the model at two rural hospitals more than a decade ago. PEN-Plus proved so successful that the Rwandan Ministry of Health expanded it to every district hospital in the country.

With support from the NCDI Poverty Network, an additional 13 global partners — Chhattisgarh State in India, Ethiopia, Haiti, Kenya, Liberia, Malawi, Mozambique, Nepal, Sierra Leone, Tanzania, Uganda, Zambia, and Zimbabwe — have since implemented PEN-Plus in at least one district-level clinic. Another eight countries — Bangladesh, Benin, Burkina Faso, Cambodia, Cameroon, the Democratic Republic of Congo, Ghana, and Nigeria — have begun initiating PEN-Plus.

With the new grant, WHO Africa will significantly extend the geographic reach of PEN-Plus.

“PEN-Plus has proven its value for expanding lifesaving care in resource-limited areas,” said Dr. Ana Mocumbi, co-chair of the NCDI Poverty Network. “In Rwanda, we watched the model’s impact grow exponentially when the Ministry of Health integrated PEN-Plus into its national strategy for NCD care. Under WHO Africa’s leadership, we cannot wait to see the model create new pathways to critical care for communities across the continent.”

In May 2023, Helmsley separately announced $10 million to support the implementation of the Global Diabetes Compact through the World Health Organization in Geneva. Together, these grants aim to advance progress in diabetes diagnosis and care on both global and national levels.