Today, I am introducing David Beran, Project Coordinator for the International Insulin Foundation. David Beran has been the Project Coordinator of the International Insulin Foundation since its establishment in 2002. He is a Swiss national who grew up in Geneva and holds a BSc in Management with an Emphasis in Marketing. He has worked for a leading Swiss Biotech Company in both Health Policy and Government Relations and in Public Relations. For his Masters’ dissertation at the London School of Hygiene and Tropical Medicine, David worked at the WHO looking at designing a model for preventing Type 2 diabetes in children.
I wrote to David a few weeks ago and asked him to write a piece on Africa and how people cope with diabetes there.
What Is the International Insulin Foundation?
In 1901 Dr. A. Cook, a medical Missionary wrote in his notes on diseases met in Africa “… diabetes is very uncommon but very fatal…” Over 100 years later I was hired by the newly established International Insulin Foundation (IIF) to accomplish its mission of “increasing access to insulin and diabetes care in the World’s poorest countries.” The IIF was established by Professor John S. Yudkin following an article he wrote in the Lancet in the year 2000 and is a registered Charity in the UK (www.access2insulin.org).
My first challenge, besides learning more about diabetes, was to find a way to develop a protocol that assessed the different levels of a given country’s health system. In essence the protocol studied two parallel paths:
– The path of insulin from its arrival in a given country until it reached/or failed to reach a given patient
– The path of care from its organisation at the Ministry of Health to when patients attended different facilities around the country.
This protocol has now been implemented in Mali, Mozambique and Zambia and the IIF has worked closely with the Ministries of Health, Diabetes Associations and local NGOs in these respective countries to improve the situation for people with diabetes.
Living with Diabetes in Developing Countries
From the moment I set foot on the African Continent what struck me was its people. After 3 years of working for the IIF and having spent 3-4 months in Mali, Mozambique and Zambia and visits to Tanzania I have had some amazing encounters, with unique people.
I have met dedicated doctors and nurses who spend many hours caring for their patients. One such nurse I met is now referred to as Mommy Diabetes. She cares for children at a special clinic, runs a camp for them and ensures that parents understand what diabetes is and especially that even though their child has diabetes it doesn’t mean they can’t live a normal life.
Another one of my encounters was with a 32-year-old journalist who had been diagnosed with diabetes 12 years earlier. He provided me amazing insight into what having diabetes in Africa was like. He was the first person with diabetes I got to know well and he made me realise that each patient had a story to tell. Before his diagnosis he had never heard of diabetes, and he thought he had malaria until the doctor he went to see checked his blood glucose. When we spoke about his condition he said he was lucky as well as he could read about diabetes on the Internet and in books, as he was literate and spoke English. The last time he went to see a doctor was 5 years ago as he put it, “I am fine. I don’t need to wait over an hour to see a doctor.” One evening we went out with some of his colleagues and they asked how we had met. I told them about my work and they were surprised to find out that their colleague had diabetes. They had no idea and asked him 100’s of questions about his condition.
Access to Healthcare – Access to Insulin
Accessing insulin and syringes was sometimes a problem for people with diabetes in sub-Saharan Africa. Insulin is not always available, for some its cost is a barrier and others have to travel far to be able to get it. Syringes are often not available in the public sector and people use their single use syringes more than once or until injections starts to hurt because of a blunt needle. Most people I met had no means of self-monitoring their blood glucose.
A young boy in a rural area had an amazing story to tell about his diagnosis. He was admitted to the hospital with suspicion of cerebral malaria. The first reflex healthcare workers have when they suspect cerebral malaria is to put the person on a glucose drip. This young boy told me how after the nurse had put the drip in he felt worse. No one did anything about it, so he tore out the drip and went crazy. A doctor then came in and asked what the problem was. When the boy described how he felt, the doctor tested his urine and found he had diabetes. Unfortunately, this boy is from a very poor family who is unable to afford his insulin and care. He receives support from a local diabetes association and one of the older members makes sure that he gets his insulin and talks to his family about the importance of caring for him.
Due to a lack of diagnostics and trained healthcare workers this scenario is all too frequent. Healthcare workers often told me, “We know what we see.” They see many patients with malaria and too few with Type 1 diabetes. They have received basic training in diabetes diagnosis and care, but lack of familiarity with the condition means that this training is often forgotten. This leads to many patients not being diagnosed, especially children.
Another experience that brings a smile to my face is when I attended the first camp organised for children with diabetes and the children were asked to make their requests to the diabetes association and government. They asked not to be forgotten and also that they wanted to create their own children’s association. The girl who delivered the speech was about 10 years old, but already a very convincing patient advocate. It was amazing to see these children learning about their diabetes and how to test their blood glucose. At the end of the camp they went swimming and became children again and not diabetics.
Inadequate Healthcare – and its Cost
The problem in the countries where I have worked is that diabetes is an expensive disease. Even though some aspects of care may be subsidised or free, there is still a cost to diabetes care, whether it is testing, insulin, transport or consultation fees. In Mali for example a patient in the capital city will spend approximately US$21.24 per month for diabetes care (US$255 per year). Half of this, about US$11, would be for one vial of 100 IU insulin. This in a country where the GDP per capita is about US$900.
The IIF believes that to tackle this problem the health system, as a whole needs to be improved. Donations of insulin and other punctual projects are beneficial in the short-run, but the IIF aims to find sustainable solutions to the problem of diabetes care and insulin access. This means working closely with local partners and improving local capacity based on a sound initial assessment with a clear set of recommendations that have been prioritised by local stakeholders.
I have only told a few stories about the patients I have met and interviewed for my work. For this work close to 100 patients have been interviewed and with many others I have had fascinating discussions. Each patient has told me a story, their story and the story of their diabetes. Some have made me laugh to tears and some have brought tears to my eyes.
Based on the IIF’s work, we have estimated that the life expectancy of a child in rural areas of sub-Saharan Africa can be as low as 7 months. Stories about people with diabetes and their suffering abound. However, I have decided to share the uplifting stories to highlight that diabetes in sub-Saharan Africa can be treated and people with diabetes can live normal lives even in the world’s poorest countries.