PEN-Plus Camp Shows Impact of Engaging Young People Living with Severe Noncommunicable Diseases
This post was written by the NCDI Poverty Network, which works to bring lifesaving care to children and adults living with severe, chronic noncommunicable diseases in low-income countries.
Each year, severe noncommunicable diseases (NCDs) cause more than half a million avoidable deaths among the world’s poorest children, adolescents, and young adults. Just four conditions—type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease—account for nearly 100,000 of those deaths.
As we approach the United Nations General Assembly and its Fourth High-Level Meeting on NCDs and Mental Health, the needs of children living with these conditions must be prioritized in the global NCD agenda.
We have seen firsthand how meaningful inclusion and integration of care can build a foundation for solidarity and support between young persons living with conditions that pose similar challenges in daily life. Just last month, the NCDI Poverty Network, alongside partners the Sonia Nabeta Foundation and the Center for Infectious Disease Research in Zambia (CIDRZ), hosted the first-ever integrated camp for children and adolescents receiving care at PEN-Plus clinics in Zambia. PEN-Plus is a care delivery model that integrates clinical services for people living with severe NCDs in rural areas of low- and lower-middle-income countries.
Camp Tuli Bonse – which translates to “we are together” – was born from the idea that integrated care and support could extend beyond clinical settings, with benefits that transcend those of physical health. The camp brought together 60 young people living with either type 1 diabetes or sickle cell disease for five days of health education, empowerment, and peer support. Before they joined the camp, many of the campers believed their condition would soon kill them. They often felt alone during negative experiences at school or in their community, and many believed they had no future. The camp experience corrected those heartbreaking notions.
Photo credit: DOD Media Hub, for the Centre for Infectious Disease Research in Zambia. Dancing and celebrating was a big part of Camp Tuli Bonse, which brought together nearly 60 young people with either type 1 diabetes or sickle cell disease for a week of health education, empowerment, and peer support.
“Sickle cell is not a death sentence,” said Esnart Banda, a 21-year-old sickle cell warrior who served as a camp counselor. “We are in this together. You can still achieve your goals.”
Mwila Ngandu, the PEN-Plus coordinator at CIDRZ, said the integrated aspect of the camp meant young warriors gained more than clinical knowledge and guidance on managing their condition.
“They’re also learning that there are other chronic conditions than the one they have,” Ngandu said. “Now, warriors are not only thinking of themselves; they are thinking of the other person, in solidarity and to build community. They are realizing they are not alone.”
The NCDI Poverty Network is committed to fostering connections and positive experiences for youth who face the triple challenge of growing up, navigating economic hardship, and managing the daily requirements of living with a severe NCD. Their voices and lived experiences need to be the foundation for global priority-setting at the highest political levels.
Call to Action
It is imperative that member states understand and prioritize the needs of children facing these conditions, hear their experiences, see their potential, and implement clinical and social programs that support their continued well-being. You can help by advocating for a focus on children in the global NCD agenda within your networks, and by sharing our Position Statement and commentary with UNICEF in The Lancet.
If you are part of a disease community, we suggest that you consider how integrated models of care and peer support programs that embrace people living with different conditions – such as type 1 diabetes, childhood-onset heart disease, sickle cell disease, and others – might benefit your community, as well.