Bukhman Foundation Provides Support for PEN-Plus Integrated Camps
Zainab Garba, a 16-year-old from Pujehun, Sierra Leone, who lives with type 1 diabetes, shows a healthy blood sugar reading after arriving at Camp Wanwɔd in early August. The integrated PEN-Plus camp was the first to receive support from the Bukhman Foundation. (Photo: Federico Bruckner)
The Bukhman Foundation has announced support for the expansion and evaluation of PEN-Plus integrated camps, which bring together young people living with type 1 diabetes in low-income countries across sub-Saharan Africa.
The Bukhman Foundation’s $450,000 commitment over the three-year grant will be channeled through one of the NCDI Poverty Network’s co-secretariats, the Center for Integration Science in Global Health Equity at Brigham and Women’s Hospital, part of Mass General Brigham.
Camps for young people living with severe, chronic noncommunicable diseases (NCDs) are a growing, successful model for providing educational, social, and recreational opportunities for children, adolescents, and young adults living with NCDs such as type 1 diabetes and sickle cell disease. The need is enormous: In much of sub-Saharan Africa, treatment for type 1 diabetes and other severe NCDs remains concentrated in referral hospitals in major cities, leaving many children and families in rural communities without access to affordable care.
Even where a diagnosis is made, limited healthcare training, social stigma, and economic barriers can make the condition exceptionally difficult to manage. In some rural areas, the average life expectancy of a child newly diagnosed with type 1 diabetes is less than one year.
These factors can cause many young people to feel alone, or like their condition is not manageable. Camps are designed to instill confidence, empowerment, and peer support, to help young people overcome those perceptions.
The Center for Integration Science, led by Dr. Gene Bukhman (who has no relation to the Bukhman Foundation), works with partners across the NCDI Poverty Network to address these inequalities through PEN-Plus, a package of clinical services and model of care for NCDs. Integrated into public health systems, PEN-Plus equips frontline healthcare providers to diagnose and manage severe, chronic NCDs—including type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease—closer to where patients live.
The Bukhman Foundation’s support will focus on helping children, adolescents, and young adults take a greater role in the day-to-day management of their insulin. Early experience in Rwanda has shown that peer-support groups and educational camps, connected to the ongoing care available through PEN-Plus clinics, can provide an effective and safe environment in which to develop these skills.
Often held during school holidays, the weeklong camps combine practical education with peer support, games, and recreational activities. They offer children—who refer to themselves and their peers as “warriors,” because of the challenges they face every day—an opportunity to learn about their condition, build confidence, and connect with others facing similar challenges.
Uniquely, the program also brings together children living with other severe, chronic conditions, creating wider networks of understanding and community support.
The grant will enable the Center and its in-country partners to expand the program into additional countries and undertake a rigorous, multi-cohort evaluation of its impact. The study will examine whether participation improves insulin self-management, glycemic outcomes, the frequency of hypoglycemic episodes, and participants’ overall quality of life. Each camp is expected to reach approximately 30 to 60 children living with type 1 diabetes.
The first camp supported by the Bukhman Foundation took place from August 3 to 7 in Bo, Sierra Leone. Camp Wanwɔd—named after a Krio phrase expressing unity—brought together approximately 60 children, adolescents, and young adults living with type 1 diabetes or sickle cell disease who receive care through PEN-Plus clinics in Sierra Leone’s Kono and Pujehun districts.
Through practical disease-management training, peer-support sessions, confidence-building exercises, music, games and team activities, Camp Wanwɔd helped participants develop the knowledge and support networks needed to manage their conditions and pursue their futures with greater independence and hope.
“This collaboration reflects our commitment to ensuring that advances in type 1 diabetes care reach children and families wherever they live,” the Bukhman Foundation stated in its announcement. “By bringing specialist care, education, and community support closer to home, PEN-Plus is helping to build stronger and more equitable health systems for people living with severe, chronic conditions.”