Kenya’s National Diabetes Strategy opened up space for patient empowerment. Hanne Strandgaard and Reuben Magako discuss what happened next.
15 September 2022 Gwendolyn Carleton
This article was originally published on the occasion of WDF's 20th anniversary on WDF20.org
Partnerships are at the heart of WDF’s work. This means that the projects WDF supports are initiated, implemented and sustained by local partners. Large and small, public and private, grassroots and global, WDF’s partners take on many shapes and sizes. But they all have one thing in common: an idea for how to alleviate human suffering related to diabetes.
One of these partners is the Kenya Defeats Diabetes Association (KDDA). It was established in 2012 ‘to make diabetes, hypertension and obesity a community agenda in Kenya,’ and its activities include community mobilisation, awareness and screening camps, patient support groups, advocacy, and peer educator training. Today, KDDA counts more than 560 diabetes support groups, 570 trained peer educators and 120,000 people educated among its achievements.
In 2008, Hanne Strandgaard, Head of Programme at the WDF, met Reuben Magoko, a passionate advocate for Kenyans living with diabetes. In the subsequent years, Reuben would found KDDA, and the two would begin a partnership that continues to this day.
A strategy that opens up space
Ms Strandgaard clearly remembers her first meeting with Mr Magako, in 2008. It was during one of her first field visits in Kenya, and he was volunteering at a diabetes educational training camp organised by Kenya Diabetes Management and Information Centre (DMI).
“He had a strong voice as a patient and a person living with diabetes,” she recalls. “He represented people living with diabetes in a very honest way that we had not seen before.”
At the time, the Kenyan health system was still grappling with the control of infectious diseases like HIV, malaria, and tuberculosis. The increasing prevalence of diabetes and other NCDs was placing an enormous strain on the country’s health system.
WDF was already on the ground, working with DMI and Ministry of Health to catalyse change. In 2010, their shared efforts paid off with the launch of Kenya’s comprehensive National Diabetes Strategy – one of the first such strategies in sub-Saharan Africa.
The advocacy leading up to the strategy, spearheaded by DMI and supported by WDF, put diabetes in the spotlight and sensitised Kenya’s government to the disease’s societal costs. KDDA was formed shortly after the strategy was adopted.
“KDDA is a baby of the Kenya National Diabetes Strategy,” Mr Magako says. “It opened up the space for awareness raising.”
Ms Strandgaard agrees. “The advocacy leading up to the national strategy emphasised how important community awareness is, and the strategy laid the groundwork for awareness building, but not many were actually doing it at that time. KDDA stepped into that gap and has kept the torch alive, advocating on behalf of Kenyans living with diabetes ever since.”
Information – the cornerstone for a good life
Mr Magako still recalls his surprise when the World Diabetes Foundation accepted KDDA's project proposal in 2012. “We are a patient-centred organisation, I never thought we would get support from the WDF,” he says. “They gave us a new face … and so many opportunities.”
But with the strategy in place, there was a need to mobilise and activate communities and integrate diabetes patient support into primary level care. KDDA’s patient-centred approaches were exactly what was needed at that time, Ms Strandgaard says.
The result was Diabetes Awareness and Peer Education in Kenya, a project working to empower and mobilise Kenyans living with diabetes. “Diabetes management is often seen only from a curative perspective, but one of the cornerstones for a good life with diabetes is the information and support to self-manage the disease. WDF has witnessed first hand how important it is for people living with diabetes to feel empowered,” Ms Strandgaard says.
Mr Magako agrees that prevention strategies are sometimes forgotten, and that helping people with diabetes help themselves is crucial. “Strategies of self-management and self-monitoring are so important. We bring people together to build support groups, to discuss how to do this,” he says.
KDDA support groups provide spaces for like-minded people to meet, access and share information about living with diabetes. They begin with the basics, explaining that diabetes is a chronic disease with no cure and must be managed correctly. KDDA uses NEST principles - Nutrition, Exercise, controlling Stress and Treatment - as a simple guide to diabetes self-management, Mr Magako says.
Today KDDA has 60,000 members across Kenya, and its office in Nairobi is a hive of activity. People stop by for advice, to request peer educators, or pick up copies of KDDA’s peer education manual, which was recently adopted by the Ministry of Health.
Despite its increasing size and reach, KDDA remains at heart a family affair. Mr Magako founded the organisation after being diagnosed with diabetes at age 67, recruiting family and friends in his efforts to advocate for patient rights and improved care in Kenya. Today, his grand-daughter Catherine Wairimu is a KDDA volunteer, donning a white coat emblazoned with the organisation’s logo to assist with mass screening and awareness events.
Raise your voice
The KDDA partnership — and others like it — hold valuable lessons for WDF about how to address NCDs globally, Ms Strandgaard says.
“What I've learned most of all is that the higher you raise your voice, the more noise you make, the more people listen. So, talking on behalf of patients is so instrumental. And I've said that to Mr Magako several times, you make so much noise, and it's so important… breaking barriers with sound.”
Mr Magako has every intention to continue making noise and advocating on behalf of people living with diabetes, he says. KDDA is currently doing advocacy work to inform county officials about the importance of diabetes prevention and care. It is also finalising a new strategic plan focused on young people under the age of 24. “They often make the mistake of thinking that diabetes is an ‘old person’s disease’,” Mr Magako explains.
The project Diabetes Awareness and Peer Education in Kenya closed in 2018, but WDF and KDDA continue to collaborate closely. For example, KDDA is contributing to a large WDF-funded project to mainstream comprehensive, multidisciplinary diabetes and NCD care in Kenya’s national health system.
KDDA’s pioneering approach to diabetes advocacy and self-management continue to influence the Foundation’s work in other situations and settings.
“Lessons from KDDA and other partners doing similar work have made a real impact on WDF, and are captured in WDF’s new strategy,” Ms Strandgaard says. “Our recommendation that partners worldwide consider the self-management aspect of diabetes comes from the strong example that KDDA and others like them provide.”