Advocacy

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.

In a new video, Lucy Johnbosco, a member of the NCDI Poverty Network’s Steering Committee from Tanzania, offers her perspective of what it takes to change perceptions of type 1 diabetes in places where many people have limited understanding of the condition.

In recognition of World Diabetes Day, educator and advocate Edith Mukantwari shares her personal story of living with type 1 diabetes in Uganda, the lessons she’s learned, and the importance of a supportive community.

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.

On September 24, the Network officially published the PEN-Plus Partnership Strategic Plan (2025–2028). “It is our commitment, our testimony, and our witness to the collective progress of NCDI Poverty Network partners in delivering healthcare and hope to people in lower-income countries,” said Dr. Gene Bukhman, co-chair of the Network.

During the week of the International Conference on PEN-Plus in Africa, NCDI Poverty Network members took advantage of several opportunities to gather, reflect, and renew their commitment to ensuring that lifesaving treatment reaches those who need it most.

At the first International Conference on PEN-Plus in Africa, the science was serious and the messages meaningful. NCDI Poverty Network participants showed their passion and compassion throughout the conference—and even shared moments of levity.

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.

“PEN-Plus” was coined only five years ago, but already the integrated care-delivery model is receiving a spotlight on the global stage, with the launch of the first annual International Conference on PEN-Plus in Africa. The invitational conference will take place in Dar es Salaam, Tanzania, in April.

Integration science can do more than deliver quality healthcare; it can also deliver global health equity solutions. That’s the central premise of “From Local Innovation to National Scale to Global Impact: Integration Science as an Engine of Change and an Agenda for Action,” the second annual symposium of the Center for Integration Science in Global Health Equity.

“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.

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.

“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.

“Much of my outreach work is focused on diabetes education because it’s important to eradicate the many misunderstandings about the condition. When I get in front of people, the first thing I say is that I’m living with type 1 diabetes. My energy and enthusiasm silence the voices that said I would die. People who live with type 1 diabetes and other severe noncommunicable diseases are no different from anyone else.“

“Becoming a health advocate and sharing my experience with the world has answered the questions that have plagued me since I was diagnosed as a child: Why do I have rheumatic heart disease? Why do I have to depend on medicine? What is the purpose in my life? I have found my purpose in health advocacy.”

The NCDI Poverty Network and Partners in Health hosted a side event titled “Caring for People Living with Severe Chronic NCDs: Practical Lessons Learned from Early PEN-Plus Initiatives” on 14 December at the 2nd International Conference on Public Health in Africa (CPHIA) in Kigali, Rwanda.

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

A team that included NCDI Poverty Network Steering Committee Co-Chair Gene Bukhman as well as Type 1 Diabetes and Global Health Equity Research Fellows Celina Trujillo and Apoorva Gomber traveled to Abu Dhabi to represent the Network and promote PEN-Plus at the 48th annual International Society of Pediatric and Adolescent Diabetes (ISPAD) Conference, 13-16 October.

More than 60 representatives of leading global health policy, technical, advocacy, and financing institutions and people living with NCDs gathered at UNICEF House in New York on September 15, 2022, to introduce the PEN-Plus Partnership, a major international initiative to address the global burden of severe NCDs and injuries that cause more than 500,000 avoidable deaths every year among children and young adults living in extreme poverty.

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).

Leaders from the World Health Organization Regional Office for Africa (WHO AFRO), WHO Headquarters, and other stakeholders invested in the implementation of PEN-Plus met in Geneva on 24 May to discuss PEN-Plus as a key strategy for decentralizing care for severe NCDs and providing the world’s most vulnerable with accessible and affordable health care for chronic conditions including type 1 diabetes (T1D), sickle cell disease (SCD), and rheumatic and congenital heart disease (RHD/CHD).

“I fought cancer and won, and now I’m fighting the stigma that people with NCDs are doomed to die, because everyone deserves access to affordable NCD treatment. I hope others who have lived with cancer and other NCDs will feel empowered to share their stories to break down stigma and demand access to treatment for all.“