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Changing Diabetes® in Children |
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 Type 1 diabetes in children causes high mortality in developing countries – a child diagnosed with diabetes in sub-Saharan Africa, for example, has a life expectancy of less than one year. The Changing Diabetes® in Children programme sets out to contribute to meeting the fourth UN Millennium Goal – to reduce child mortality – by breaking down the barriers that prevent children with type 1 diabetes in developing countries from receiving proper care. It is operating in six countries – Bangladesh, Cameroon, the Democratic Republic of the Congo (DRC), Guinea, Tanzania and Uganda.
The five-year Changing Diabetes® in Children programme, which began in 2009, is part of Novo Nordisk’s strategy for access to care, and builds on four priorities within the right to health – availability, accessibility, affordability and quality of healthcare. It aims to improve the health and quality of life of children with type 1 diabetes living in developing countries. At the same time it is helping to strengthen the capacity of the local healthcare systems and building long-term solutions for sustainable diabetes care in the world’s poorest countries.
The programme uses an approach piloted in Tanzania in 2006. The Programme is built on a hub-and-spoke concept aimed at bringing diabetes care closer to the children who need it. Novo Nordisk is working to increase the number of children brought within the programme to a total of 10,000 children by 2015.
 Key components of the programme
- Infrastructure and equipment: development of infrastructure and supply of medical and laboratory equipment to establish centres for the treatment of children with type 1 diabetes
- Capacity building: training of healthcare professionals and diabetes educators to develop diagnostic abilities and the expertise to treat children with diabetes
- Patient education: education materials for children and their families, including organisation of training camps
- Free insulin: provision of insulin free of charge to children and adolescents
- Diabetes registry: patient registration software will be offered together with computers, allowing children with diabetes entering into the programme to be registered, their condition monitored and controlled
- Monitoring equipment and supplies: through partnerships, the provision of equipment and supplies for monitoring of treatment
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A Training Manual: Diabetes in Children and Adolecents
Diabetes is a killer disease in many parts of the world, especially when it strikes in childhood or adolescence. This is because of its relative rarity, so that parents and family members do not recognise its subtle beginning symptoms (new onset enuresis, excess thirst, excess urination during the day and the night, and unexplained weight loss). Similarly, healthcare workers at all levels of sophistication, from triage workers to emergency room physicians, fail to ask questions about diabetes in developing countries where problems such as AIDS, malaria, pneumonia, sepsis or overwhelming gastrointestinal infection occur more commonly.
This manual has been prepared in order to help frontline healthcare professionals to improve the diagnosis, treatment and quality of life of children with diabetes in developing countries. It is produced with the hope that it will bring some basic knowledge to many parts of the world about paediatric and adolescent diabetes, insulin, diabetic ketoacidosis and hypoglycaemia emergencies.
The manual will be translated into different languages and will serve as the basis for further education and organisational efforts. The present manual complements the evidence-based ISPAD Clinical Practice Recommendations, which are updated regularly (www.ispad.org). A more detailed manual for providing further information about the specialised paediatric and adolescent diabetes centres that will be part of the Changing Diabetes ® in Children collaborative effort is planned for 2011.
The training manual is available in English and French. Training presentations are also available. Click here to download.
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The challenge
The International Diabetes Federation estimates that almost half a million children worldwide (480,000) now have type 1 diabetes. Of these, about a quarter of a million (or 52%) live in developing countries with inadequate healthcare. Sub-Saharan Africa has one fifth of the world’s children under five, but accounts for one half of all child deaths (from all causes) in the developing world.
 Many children with diabetes die without being diagnosed as health care providers can miss diabetes through lack of adequate training. In children, diabetes shows itself as an acute crisis, so it is often misdiagnosed and the wrong, sometimes fatal, treatment is given, e.g. for dehydration or malaria. Treatment, and quality of life for those lucky enough to be correctly diagnosed, varies according to the availability and training of healthcare providers, and to the availability and accessibility of insulin and other supplies. In many cases no follow-up treatment is available.
Poverty, too, is a major barrier. On a personal scale, it limits what families can afford to pay for insulin, glucose monitoring strips and other equipment. In the absence of healthcare funding, these have to paid for out-of-pocket, which can mean the stark choice between medicines and food for the family. Transportation to medical centres for treatment can also be expensive or non-existent.
Better diagnosis and better care for children with type 1 diabetes is very difficult to achieve in developing countries, as it is not seen by governments as one of the most urgent priorities. Although it affects many thousands of children, other medical issues like HIV/AIDS, tuberculosis and malaria are still seen as a more pressing problem.
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Working in Partnership
Working with national and international partners has been essential to establish this programme in a large number of locations within six developing countries. In particular, Novo Nordisk has collaborated with the World Diabetes Foundation and with local partners such as national diabetes associations and Ministries of Health. The ultimate aim of the programme is that local governments will take it over after five years. It is an essential aim, as for all our partnership initiatives, that we provide immediate relief and perhaps even more importantly, at the same time we are building a lasting and long-term solution. When the Changing Diabetes® in Children programme ends, our hope and intention is that it is properly embedded in the national healthcare systems and will continue as a government initiative.
Within each country in the programme, centres or hubs are established in existing diabetes clinics. Linked with each hub are a number of satellite access points which are general clinics offering diabetes monitoring and treatment. The whole hub-and-spoke system is coordinated by a central point for that country.
.jpg) All children entering the programme become part of a diabetes register so their progress can be monitored and their treatment followed through receive free insulin, glucometers and strips – a service that continues for the duration of the programme. This programme is the first example of Novo Nordisk supplying free insulin, apart from its emergency aid initiatives.The programme gives major support to both the diabetes centres at the hubs and also the satellite access points. They are provided with medical equipment, including glucometers and strips; also storage facilities for medical supplies, with support to set them up correctly. The centres are given appropriate registry systems, developed by Novo Nordisk for recording blood glucose (HbA1c) and other monitoring data, and the training to use it. Data produced in this way is an invaluable source of information about the state of diabetes in these countries and how it is being controlled. It will contribute to our understanding of the practical extent of the problem. Only by gathering the missing information about who and where they are, will we be able to ensure that individual children are given access to desperately-needed treatment throughout the course of their illness.
All this equipment is complemented by information and training for both healthcare professionals and for the people with diabetes who are their patients. Medical staff are given training in how to identify the symptoms of diabetes and to give appropriate care. Age and literacy appropriate information is supplied for patients and their families to help them control their diabetes through diet and self-care.
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Performance
Estimates by the International Diabetes Federation suggest that approximately 250 thousand children in developing countries are afflicted with diabetes, but information is still sparse and incomplete. Our immediate priority is to register children who are already diagnosed and provide them with diabetes care, where after we will focus on issues of misdiagnosis and expansion of the programme. We are only beginning to bring together data on the present situation and how it is improving, and this is made even more difficult by the known inadequacies of diagnosis. In short, we need to be able to assess not only access to medicine, but the overall quality of care.
 To do that, establishing registries to document diabetes care will be the key to assessing the success of the programme in future years. As the Changing Diabetes® in Children programme began in 2009, it is too early to present a detailed picture of its results. Without a baseline of information about the previous care available, it will be some time before we can show how effectively it is being complemented by the hub-and-spoke system. The first objective is to enrol children in the programme, and our ambition is to increase the number of children registered gradually from the first thousand in 2009 to 10,000 children by 2015.
Currently thereare 971children enrolled in the Programme.
References
International Diabetes Federation. The Diabetes Atlas. Fourth Edition. Brussels: International Diabetes Federation; 2009.
UN High-level event on the Millennium Development Goals, September 2008. Fact Sheet on MDG 4: Reduce child mortality |
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Explore our access initiatives around the world
Our interactive map allows you to explore our Access to Diabetes Care initiatives all over the world and to find out more about the individual programmes. |
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