PEN-Plus: A Holistic Approach to Healthcare

Bright Mailosi (left) with Aggrey, a PEN-Plus patient living with type 1 diabetes in Malawi.

PEN-Plus clinical team members in the Karonga district of northern Malawi were reviewing their caseload when they realized a patient was missing from the roster.

“Aggrey, a 20-year-old living with type 1 diabetes, hadn’t visited the clinic in three months,” said Bright Mailosi, a mentor for noncommunicable diseases (NCDs)  who happened to be visiting Karonga to provide mentorship and collect research data. “That raised a red flag, and the team started to worry. I immediately reached out and started planning a home visit.”

For the PEN-Plus health providers who diagnose and treat people living with severe NCDs, it is scary—although not uncommon—for patients to miss clinic appointments. Barriers to care often arise because of such issues as the cost of transportation, a lack of childcare, or the inability to miss a day of work and forgo wages.

“Multiple factors led Aggrey to miss his appointment,” Mailosi said. “He doesn’t have a reliable means of transportation, nor does he understand the importance of routine visits to manage his condition. People living in rural communities often experience many such barriers to care. That’s why PEN-Plus clinics provide social support, patient education, and occasional home visits.”

Patient-Centric Care

PEN-Plus, an integrated healthcare delivery model, provides lifesaving care to children and young adults living with NCDs in extreme poverty in nearly two dozen countries across sub-Saharan Africa, South Asia, and the Caribbean. PEN-Plus also provides social support for people with NCDs and their families, who may struggle to pay for transportation to the clinic and the regular, nutritious meals that a healthy life requires.

“When a PEN-Plus team hasn’t heard from a patient,” Mailosi said, “we’ll visit them and their family at home to see whether we can ease any challenges.”

The proactiveness of PEN-Plus staff like Mailosi and Luckson Chiphiko, the PEN-Plus coordinator for the Karonga district, has made a huge difference for Aggrey and others living with chronic NCDs in the community.

“I met Aggrey for the first time in December 2022, a few months after the PEN-Plus clinic opened in Karonga,” said Chiphiko. “Aggrey was diagnosed with type 1 diabetes in 2017, but the lack of patient education and a follow-up plan meant his condition had not been well managed for years. A community health worker who knew Aggrey’s situation told me about a young man living with type 1 diabetes who was in poor health.”

Aggrey had been diagnosed with cholera, so Chiphiko got him enrolled in the PEN-Plus clinic and then later hospitalized. At the time, Aggrey was severely malnourished and had diabetic ketoacidosis—a potentially fatal condition.

“Comorbidities like those Aggrey experienced are common among the communities we serve,” said Evelyn Chibwe, a nurse specializing in NCDs at Abwenzi Pa Za Umoyo (APZU/Partners In Health Malawi), the implementing partner for PEN-Plus in Malawi. “We often see patients who have not only severe NCDs like type 1 diabetes but also other health challenges such as tuberculosis or cholera.”

Aggrey recovered from diabetic ketoacidosis thanks to the PEN-Plus care he received. During his first visit to the clinic in December 2022, he and his mother received comprehensive counseling that focused on understanding his type 1 diabetes, managing his diet, monitoring his glycemic levels at home using the glucometer provided, and storing, dosing, and injecting his insulin.

“PEN-Plus providers take a patient-centric approach to meet each patient’s unique needs,” Chibwe said. “We have one-on-one conversations with each patient to understand their circumstances and treat each patient accordingly.”

Unfortunately, although clinicians emphasized to Aggrey the importance of regular clinic visits to manage his chronic condition, that lesson faded in the presence of so many barriers to care.

A Temporary Setback

When Mailosi and the Karonga PEN-Plus team arrived for the scheduled home visit with Aggrey in September 2023, Aggrey’s family described their struggle to pay for food. At 55 pounds, Aggrey was severely underweight for a 20-year-old man. His father had passed away when Aggrey was only three, and his mother, a commercial sex worker, had left the picture shortly after Aggrey enrolled in the PEN-Plus clinic. His grandmother supported them both by making mats from reeds.

“Home visits give us a clear picture of a person’s situation,” said Chiphiko. “The Karonga district is experiencing a drought, and many are struggling to put food on the table. There was not a single bag of rice or maize in Aggrey’s house, and we could tell the family was experiencing poor nutrition. We have been using PEN-Plus social support funds to provide the family with maize flour ever since.”

The clinicians also realized Aggrey needed more guidance on managing his condition.

“Aggrey was using the same syringe to inject insulin for an entire week, even though we had supplied him with enough to use one syringe every day of the month,” said Chiphiko. “He simply didn’t know he should use a new syringe daily, to avoid the likelihood of skin infection or injury.”

A Brighter Future

Following the PEN-Plus team’s home visit, Aggrey has been gaining weight, his health has improved, and his grandmother has found relief in the social support provided.

“It is inconceivable that a 20-year-old man would weigh only 55 pounds,” Mailosi said. “So much could have been done to intervene when he was first diagnosed with type 1 diabetes. Although I wish PEN-Plus had arrived in Karonga years earlier, I’m excited that we’ve changed the narrative of how complex NCDs are managed in rural areas.

“Aggrey and others living with severe NCDs have found a medical home,” Mailosi added. “And their lives are changing for the better. They have a team of providers listening to and caring for them. And the social support is removing many barriers to care.”

PEN-Plus patients also find support through each other.

“Aggrey told us the clinic has changed his life,” said Chiphiko. “He was often mocked for how small and skinny his poorly managed disease made him, so he felt isolated. The PEN-Plus clinic has made him realize, though, he’s not the only one living with type 1 diabetes.”

Aggrey’s improved mental health has also enhanced his physical health, Chiphiko added. “He’s much happier, and he no longer feels alone. Making friends with others living with type 1 diabetes has given him the confidence to express himself and thrive.”