No-cost diabetes care saving young lives in Kenya

Tala, Kenya — Four years ago 15-year-old Simon Maingi was diagnosed with type 1 diabetes, but only after several hospital visits. Many children with this condition, which requires daily insulin administration to survive, die before they are diagnosed, says Zacharia Ndegwa Muriuki, the head of Kenya’s National Diabetes Prevention Control Programme. For Maingi, fate would have perhaps had it differently without the free care and medication provided by the Diabetes Management and Information Centre – a private Kenyan organization that that has helped more than 3000 children since launching its no-cost services 10 years ago.

Late or no detection and inadequate care are some of the greatest impediments in controlling diabetes. “We realized there was a major need,” says Dr Nancy Ngugi, a Diabetes Management and Information Centre board member. “Most of the children we diagnose are from poor families. They can’t afford insulin, glucometers, strips, or hospital consultation fees.

The starting point for diabetes care is early detection. Type 1 diabetes cannot currently be prevented. Maingi is now takes daily insulin injections and monitors his blood sugar level to control the disease. Muriuki of the Kenya National Diabetes Prevention Control Programme says that an estimated 50 000 to 70 000 Kenyan children are living with type 1 diabetes.

“He was losing weight. Always hungry,” recalls Dorcus Nthenya, Maingi’s mother, before her son got the diagnosis. “He was constantly exhausted and would even faint. We took him to hospital several times. We didn’t know what was wrong.”
Mary Nyiha (centre), a nurse’s aide working with Diabetes Management and Information Centre, is part of a team visiting Simon to check on his overall health. She sits with Simon and his mother discussing his diet, sugar levels and daily routine.

When one of its patients isn’t doing well, the NGO will travel to the home to find out which aspect of care needs improvement and offer solutions.

After he was diagnosed, Maingi became one of the 3000 children enrolled in the Diabetes Management and Information Centre’s Changing Diabetes in Children programme, which provides free care, medication, and follow-ups.

Diabetes has been on the rise in Kenya due to demographic and social changes including urbanization, aging population, and adoption of unhealthy lifestyles, according to a 2015 survey, which also found that 88% of people do not know their diabetes status.

“This is of great concern because it has costly public health implications for any country,” says Dr Juliet Nabyonga, acting WHO Representative in Kenya. “We are supporting the country to improve diabetes prevention and care.”
Nyiha examines the vial of insulin Maingi has been using, checking for signs of contamination. Having identified a problem with the insulin’s storage Nyiha explains how—even without a fridge—insulin can be kept cool and clean.

In 2018, Kenya’s Ministry of Health partnered with the Diabetes Management and Information Centre and other organizations to develop national guidelines for treatment of type 1 and 2 diabetes and a standardized curriculum to train health workers on diabetes management.

The curriculum has been used to set up satellite centres in more than 30 facilities across 20 counties where children can go for diagnosis and treatment.
Eric Omondi, a nurse with the Diabetes Management and Information Centre checks a swollen injection site on Maingi’s arm.

“Diagnosis and care have to be standardized,” Dr Ngugi of the Diabetes Management and Information Centre explains. “Over the past five years, we’ve trained health workers and educators about how to recognize and treat diabetes so that when a child has symptoms, they are tested for the disease and not misdiagnosed with malaria or typhoid. Once diagnosed, there must be qualified staff who understand how to care for people with type 1 diabetes.”
Wilson Maina recalls when his 10-year-old daughter, Margaret, was first diagnosed. The US$ 340 hospital bill and monthly US$ 40 medicine expenditures were so high that he could no longer afford her school fees following, Maina says.

With help from the Diabetes Management and Information Centre, Maina was able to enrol his daughter in school again.
“We’ve found that for the children enrolled in this programme, their sugar control improved, they were able to reach puberty, continue with education and had improved performance in school,” Dr Ngugi says.

The care continued and expanded during the COVID-19 pandemic. Patients registered in the Diabetes Management and Information Centre continue to receive medicine and clinical care at no cost. The programme also expanded to care for beneficiaries until they reach 25 years, lifting the cut-off age by seven years.
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