‘I Am a Warrior’: PEN-Plus Camp Shows the Power of Peer Support for Young People Living with Severe NCDs
During a warm-up dance at Camp Tuli Bonse, sickle cell warrior Dorothy Lupupa (third from center left, in the black headband) shares a laugh with Luwi Chikotola, a type 1 diabetes warrior and camp counselor.
It’s morning at Camp Tuli Bonse, and that means it’s time for the energizer.
“WHO ARE YOU??” Dr. Indrex Chisawa, known as Dr. Rex, bellows to nearly 60 young people gathered in an event hall near Lusaka, Zambia, as the rising sun shines through windows. “The energizer” doesn’t refer to Dr. Rex himself—it refers to the daily wake-up activity that occurs after breakfast and blood sugar readings—but it might as well. On Day 2 of this weeklong camp for youth living with severe, chronic noncommunicable diseases (NCDs), Dr. Rex is energy in human form, shouting with the kind of volume that demands a response.
“I AM A WARRIOR!!” the young people bellow back, smiling and raising their arms.
“WHO ARE YOUUUUU?” Dr. Rex thunders.
“I AM BRAVE!”
Dr. Rex roars his question one more time. The young warriors shout that they are triumphant, as they strike victory poses. Altogether, this call-and-response mantra is one they will repeat over and over this week.
“I am a warrior. I am brave. I am triumphant.”
For every youth in the room, it’s 100 percent true. Or it will be.
‘We Are Together’
The NCDI Poverty Network, the Sonia Nabeta Foundation, and the Center for Infectious Disease Research in Zambia (CIDRZ) held Camp Tuli Bonse in August, as the first disease-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, chronic NCDs in rural areas of low- and lower-middle-income countries.
Camp Tuli Bonse—which translates in Nyanja 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 nearly 60 young people living with either type 1 diabetes or sickle cell disease, for five days of health education, empowerment, and peer support.
In the 10 months of collaboration and preparation leading up to the camp, organizers and clinical leaders extensively discussed concerns about how and whether the integrated structure would work, and what new or unexpected challenges it might present—medically, socially, logistically, and nutritionally.
Even linguistically: Nyanja, for example, was one of at least four Bantu-family languages spoken at the camp, along with Bemba, Lenje, and Shona. Participants and staff also spoke English, French, and Portuguese. The blend of languages reflected the camp’s blend of NCDs, health backgrounds, and clinical needs.
“This is going to be a learning experience for every single one of us—and the point is unity,” Ophelia Nabeta, co-founder and regional director of Sonia Nabeta Foundation, told staff members on orientation day.
PEN-Plus Pipeline
Unity was a primary theme throughout the week, which tread new ground for NCD support. Historically, global health interventions and agendas frequently have neglected young people with NCDs in low-resource settings. When interventions do occur, they often are siloed—tied specifically to one condition—and therefore missing out on opportunities for greater efficiency, accessibility, and collaboration.
But for people living with or affected by NCDs, those opportunities cannot afford to be missed.
Each year, severe 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.
The PEN-Plus model of integrated care for NCDs has proved successful in helping to bridge this deadly gap in the global health agenda. Nearly 30 countries in sub-Saharan Africa, South Asia, and the Caribbean are in various stages of implementing PEN-Plus.
Dr. Gene Bukhman, co-chair of the NCDI Poverty Network, said PEN-Plus in Zambia has grown significantly since he last visited three years ago, to talk about launching the integrated package of clinical services in the country.
“It’s really amazing to be here now, such a short time later, and see all the progress,” he said, citing the more than 500 patients now receiving care for type 1 diabetes, sickle cell disease, or childhood-onset heart disease, across three PEN-Plus clinics.
Dr. Bukhman also emphasized Zambia’s recent announcement of a national operating plan for PEN-Plus, strong support from the Government of Scotland, the opening of two more clinics, and a growing network of PEN-Plus physicians and clinicians who have been taught how to train others in the program.
“They’re in a great position to expand this program nationally,” Dr. Bukhman said.
Pauline Nalungwe, a nurse for more than 40 years, already has noticed the difference.
Now a nurse for CIDRZ at Mwachisompola First-Level Hospital, Nalungwe said the hospital’s PEN-Plus clinic provides care for about 100 young people living with sickle cell disease. Ten of those warriors attended Camp Tuli Bonse, along with 10 type 1 diabetes warriors from the clinic. Two other first-level hospitals in Zambia—Matero in Lusaka and Kapiri Mwochi, about three hours north—also sent young people from their PEN-Plus clinics to the camp.
Clinicians such as Nalungwe joined as well, getting an opportunity to spend time with their patients outside of a medical office.
“Clinical visits can be very clinical,” noted Dr. Wirgan Mwape, camp physician for CIDRZ and medical superintendent at Kapiri Mwochi First-Level Hospital. “Here, we can connect on a personal level. It’s a great way to build trust.”
Sitting at a table in the event hall as camp activity swirled around her, Nalungwe said the care for young people with NCDs is now enabling them to live stable lives, in full health and with much greater access to medicine.
“PEN-Plus is a game changer for NCDs,” Nalungwe said. “Game. Changer. No question about it.”
Facing Stigma
Evidence of that change could be found among older warriors, 20-something adults who served as counselors and mentors for the younger warriors, who were as young as 10. Many of the older warriors remarked during the week about how, when they were young, no camp like this existed—but they would have loved to have attended one, because stigma about NCDs persisted then, as it does now.
Darren Muhangi, 25, a Ugandan data clerk and camp counselor for the Sonia Nabeta Foundation, said the biggest challenge he heard younger warriors talk about was being bullied at school, where awareness about type 1 diabetes and sickle cell disease was usually low.
“Some of them hide their medication—you’ll find them taking insulin in the bathroom,” Muhangi said, noting that he did the same when he was in school.
Naomi Mwila, a 24-year-old who lives in Lusaka, talked during an advocacy training session at the camp about how, since her type 1 diabetes diagnosis a year ago, she has feared giving birth, because neighbors and community members told her that pregnancy and childbirth were dangerous, even fatal, for people with diabetes.
The misconceptions she heard fueled her own anger, Mwila said, recalling how she “didn’t want to accept that I have diabetes.”
Mwila Ng’andu, PEN-Plus coordinator for CIDRZ, said mid-week that she already was seeing those perceptions change. The integrated nature of the camp was contributing to those mental shifts, she said, because warriors’ views were expanding beyond their own condition.
“They’re learning that there are other chronic conditions than the one they have,” Ng’andu 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.”
In advocacy sessions and focus groups during the week—and in skits during the camp talent show—warriors shared how they faced discrimination and ignorance at school, at friends’ homes, in their own homes, in the job market, and in their communities.
That’s why—in addition to educational lessons on insulin storage and administration for the warriors with diabetes, or on pain management, hydration, medication, and genetic testing for those with sickle cell—Camp Tuli Bonse focused on peer support, shared experiences, and upbeat encouragement.
“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.”