Network Hosts First Advocacy Summit
Voices for PEN-Plus advocates, local advocates living with severe noncommunicable diseases, and PEN-Plus Partnership members joined NCDI Poverty Network leaders in Dar es Salaam in April to brainstorm ideas for increasing the scope and effectiveness of their joint advocacy initiatives.
On April 26, following the conclusion of the first International Conference on PEN-Plus in Africa, the NCDI Poverty Network hosted the first Voices for PEN-Plus Advocacy Summit.
The event, held at the National Institute of Medical Research in Dar es Salaam, Tanzania, brought together Voices for PEN-Plus advocates, local advocates living with severe noncommunicable diseases, PEN-Plus Partnership representatives, and Network leaders to brainstorm ideas for increasing the scope and effectiveness of advocacy initiatives.
The summit’s facilitators were Rachel Gasana, the Network’s senior director of advancement; Dr. Apoorva Gomber, the Network’s associate director of advocacy; and Allyson Frazier, national senior director of advocacy at the American Heart Association.
“As the Network and this coalition grow,” Gasana said, “we need docking spaces where stories can be channeled up, forums for talking about challenges and solutions, and opportunities to strategize. All that infrastructure, all that scaffolding, is what those of us in this room are building. This is ground zero, and with patience, we will have the answers.”
Gasana opened the summit with an introduction to key objectives:
To develop a common framework for informing steps for collaboration by connecting International Conference on PEN-Plus in Africa calls-to-action with the work of Network members and advocates;
To identify opportunities and co-design solutions for committed engagement with country-level, regional, and multilateral partners through the Network; and
To foster connection and solidarity among stakeholders deeply experienced in advocacy around severe chronic noncommunicable diseases, with a focus on type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease.
To remind everyone of the high stakes of their work, several participants living with severe noncommunicable diseases in PEN-Plus countries shared their stories.
“We’re here today to share the day-to-day realities of those grappling with NCDs, not just ourselves but also those in remote areas who may not have a voice,” said Emmanuel Kisembo, a Voices for PEN-Plus advocate living in Kampala, Uganda. “I was diagnosed with type 1 diabetes during my first year of architecture school. Despite the challenges, I completed my education, started a family, and built a life. However, this isn’t the reality for most people with noncommunicable diseases in my country. Without implementation, our efforts will remain confined to paper, leaving the situation unchanged.”
Summit attendees took part in a team-building icebreaker, a stakeholder mapping exercise, and a spirited discussion. Several central takeaways emerged, including the need to:
Connect Voices for PEN-Plus advocates more meaningfully with PEN-Plus patients to foster peer support and mentorship, identify leaders from communities, and ensure they are supported to generate community and support;
Continue to educate and refine messaging around PEN-Plus: what it is, why it matters to disease-specific communities, and how there is strength in collaboration; and
Synthesize all the ideas into a more targeted programmatic direction.
Those takeaways were more than just recommendations from the meeting, Gasana noted; they also offered opportunities for the organizations involved to shape their strategies moving forward.
Participants infused the Advocacy Summit with wisdom, passion, and good humor.