Sickle Cell Disease

The NCDI Poverty Network’s recent week of advocacy in Rwanda included visits to two hospitals, a conference with more than 700 attendees, a panel with four expert speakers, and one recurring theme: the recognition that PEN-Plus is an effective model for mobilizing action and financing to increase access to care for people living with severe, chronic noncommunicable diseases.

Eight-year-old Amza Musa receives free treatment for his sickle cell disease at the PEN-Plus clinic at Koidu Government Hospital in eastern Sierra Leone.

The NCDI Poverty Network—through one of its co-secretariats, the Center for Integration Science in Global Health Equity at Brigham and Women’s Hospital—has joined UNICEF in publishing a report on the burden on noncommunicable diseases on children, adolescents, and young adults in South Asia.

Camps that bring together young people living with a severe noncommunicable disease are showing that the benefits of integrated care can extend far beyond clinical settings. The first such camps—held this year in Rwanda and Zimbabwe—hosted young people with type 1 diabetes, sickle cell disease, and childhood heart disease.

The PEN-Plus Partnership Strategic Plan (2025–2028) had its official launch at Springboard for Action, an event celebrating progress toward global access to care for people living with severe, chronic noncommunicable diseases. The NCDI Poverty Network hosted the event in New York City in September on the sidelines of the 79th Session of the U.N. General Assembly.

In Springboard for Action, a PEN-Plus celebration held in September on the sidelines of the 79th Session of the U.N. General Assembly, leaders from the World Health Organization’s Regional Office for Africa, UNICEF, and Nigeria’s Ministry of Health and Social Welfare all expressed their commitment to PEN-Plus. The event also featured a performance by the Broadway cast of Disney’s The Lion King.

The Network has published PEN-Plus Clinical Tools and Programmatic Standards, a document aimed at informing clinic planning, budgeting, and operations by providing a crisp definition of PEN-Plus clinical care, including the diagnostic, treatment, and patient support services available.

In recognition of World Sickle Cell Day on June 19, a Lancet Haematology editorial cited both PEN-Plus and the first International Conference on PEN-Plus in Africa as initiatives that can help ensure improved access to diagnosis, treatment, and care for people living with sickle cell disease in low- and middle-income countries.

The PEN-Plus clinic in eastern Uganda began as a gathering under a tree and has blossomed into a standalone structure with consultation and treatment rooms, a training center, and a pharmacy.

Following the International Conference on PEN-Plus in Africa, the NCDI Poverty Network hosted the first Voices for PEN-Plus Advocacy Summit. The event, held in Dar es Salaam, Tanzania, on April 26, brought stakeholders together to brainstorm ideas for increasing the scope and effectiveness of advocacy initiatives.

“Tawonashe is exactly the kind of patient for whom PEN-Plus was designed,” said Dr. Alvern Mutengerere, project manager for noncommunicable diseases at SolidarMed, the implementing partner for the PEN-Plus clinic in Masvingo.

“We’re called sickle cell warriors because we’re fighters. Even though we experience excruciating bouts of pain, we can overcome.”

More than 60 clinical experts, civil society members, people living with sickle cell disease (SCD), and NCD advocates from around the world came together on 25 August 2022 to discuss the burden and barriers of accessing care delivery for SCD in rural areas.

A team that included NCDI Poverty Network Co-Chair Dr. Gene Bukhman, Voices Advocacy Fellow Eunice Owino, and Advocacy & Training Associate Lauren Brown traveled to Paris in June to represent the Network and promote PEN-Plus at the 4th Global Congress on Sickle Cell Disease (SCD).