E U ISS GLOBAL PERSPECTIVES ON DIABETES Volume 56 – D ecember 2011 SPECIAL TYPE 1 DIABETES A very special issue 47 6 32 DiabetesVoice 43 CONTENTS DIABETES VIEWS 4 International Diabetes Federation Promoting diabetes care, prevention and a cure worldwide THE GLOBAL IMPACT Diabetes Voice is published quarterly and is freely available Estimating the worldwide burden of type 1 diabetes 6 Leonor Guariguata online at www.diabetesvoice.org. Hope springs for young people with type 1 diabetes 9 The production of this Special Issue has been made possible Graham Ogle and Larry Deeb thanks to the support of Sanofi Diabetes. The 3-C Study – strong partnerships to improve care This publication is also available in French, Spanish for people with type 1 diabetes in China 13 and Chinese. Linong Ji and Helen McGuire Editor-in-Chief: Stephanie A Amiel, UK MANAGEMENT, CARE AND PREVENTION Managing Editor: Olivier Jacqmain, [email protected] The key to managing diabetes without tears – the treatment and Editor: Tim Nolan, [email protected] Advisory group: Pablo Aschner (Colombia), teaching programme for flexible insulin therapy in Germany 16 Ruth Colagiuri (Australia), Patricia Fokumlah (Cameroon), Ulrich Alfons Müller Attila József (Hungary), Viswanathan Mohan (India). Taking the benefits of DAFNE to the UK and beyond 19 Layout and printing: Luc Vandensteene, Ex Nihilo, Belgium, Stephanie A Amiel, Julia Lawton, Simon Heller www.exnihilo.be Positive results in Australia – OzDAFNE takes up the challenge 22 All correspondence and advertising enquiries should be Dianne Harvey addressed to the Managing Editor: Never say never – implementing DAFNE in Kuwait 24 International Diabetes Federation, Chaussée de La Hulpe 166, Ebaa Alozairi 1170 Brussels, Belgium Phone: +32-2-5431626 – Fax: +32-2-5385114 – [email protected] Great results for DAFNE Singapore – next stop, South-East Asia 27 Su-Yen Goh and Daphne Gardner Making progress with immune therapies for type 1 diabetes 29 © International Diabetes Federation, 2010 – All rights reserved. Mark Peakman No part of this publication may be reproduced or transmitted in any form or by any means without the written prior permis- All that glitters is not gold – why we need better trials and reporting 32 Rury R Holman sion of the International Diabetes Federation (IDF). Requests to reproduce or translate IDF publications should be addressed Back to the future: investigating new treatments for type 1 diabetes to the IDF Communications Unit, Chaussée de La Hulpe 166, using old inexpensive drugs 37 B-1170 Brussels, by fax +32-2-5385114, or by e-mail Denise Faustman and Miriam Davis at [email protected]. The information in this magazine is for information purposes only. CAUSES AND EffECTS IDF makes no representations or warranties about the accuracy and reliability of any content in the magazine. Any opinions expressed From victim to protector – what the brain does with hypoglycaemia 40 are those of their authors, and do not necessarily represent the views Stephanie A Amiel of IDF. IDF shall not be liable for any loss or damage in connection with your use of this magazine. Through this magazine, you may Epilepsy in children and adolescents with type 1 diabetes 43 link to third-party websites, which are not under IDF’s control. Edith Schober and Reinhard Holl The inclusion of such links does not imply a recommendation or an endorsement by IDF of any material, information, products and services advertised on third-party websites, and IDF disclaims any DIABETES CHAMPIONS liability with regard to your access of such linked websites and use of any products or services advertised there. While some information Breakthrough – the story of Elizabeth Hughes and in Diabetes Voice is about medical issues, it is not medical advice and should not be construed as such. the making of a medical miracle 45 Arthur Ainsberg ISSN: 1437-4064 Cover photo © Wong Sze Yuen - istockphoto.com In the race for a glittering prize – Team Type 1 hits the road 47 Phil Southerland From diabetes education and prevention all the way to sporting excellence – Italy’s BCD Campaign 49 Massimo Massi-Benedetti December 2011 • Volume 56 • Special Issue 2 DiabetesVoice 3 DIABETES VIEWS the diabetes pandemic that maximizes the resources available to tackle the causes A VERY SPECIAL and consequences of the upsurge in type 2 diabetes and prioritizes the needs of people with type 1 diabetes. The diagnosis, treatment and management of non-preventable diabetes require integrated health systems, ISSUE IN A delivery of care down to primary care level and supportive policies outside the health sector. STELLAR YEAR In terms of our campaign to achieve those long-term objectives, 2011 has been a landmark year for diabetes. In September, I attended FOR DIABETES an historic meeting of world leaders The 5th edition of the IDF Diabetes Atlas, which was launched on at the UN Summit, where they adopted the first ever Political World Diabetes Day, 14 November 2011, presented some daunting Declaration on Non-Communicable Diseases. The standard bearer figures: the estimated number of adults living with diabetes has for diabetes throughout, IDF has been a principal figure in the soared to 366 million – more than 8% of the global adult population NCD Alliance largely responsible for that historic accomplishment – and is projected to rise to 552 million people by 2030 – just in New York. And we are among the ‘NCD revolutionaries’ – as short of 10% of all adults. That means that diabetes is growing at described recently by Richard Horton, Editor of The Lancet – who the extraordinary rate of approximately three new cases every 10 are striving to ensure that the promises made by governments can seconds. The Atlas estimates confirm that diabetes continues to be turned into action for people with diabetes of any type. affect disproportionately the socially disadvantaged and continues to increase especially rapidly in low- and middle-income countries Diabetes needs the reach, the voice and the power to generate – where the health system is already ill equipped to provide care government interest in health-protective policies beyond the health and resources for people with any type of diabetes. sector – and then to actually legislate for them. A broad coalition of aligned groups will be fundamental; inter-sectoral alliance is While type 2 diabetes dominates in sheer numbers, type 1 diabetes a significant recommendation of the 2011 Political Declaration. remains a very special issue. With 70,000 newly diagnosed young IDF provides the platform for that much needed collaboration. people every year, the prevalence of type 1 diabetes is growing IDF engages in ‘triple p partnerships’ (public-private-people) that globally – not just in northern Europe. Those affected have very bring together non-health actors and key stakeholders, including particular needs. The bottom line could not be more crude: unless the private sector where appropriate, and civil society in proactive they are diagnosed quickly and then receive insulin and skilled partnerships to promote and protect health. instruction on how to use it, people with type 1 diabetes die very quickly. That adults and children should be dying every day because As we look forward to a new year and welcome a new springtime they go undiagnosed or do not have access to insulin is deplorable. in the fight against diabetes, we must act as a global community. We are all part of the solution! In various partnerships with other non-profit groups and public and private entities IDF is working to bridge some of the gaps. IDF’s child sponsorship programme, Life for a Child, supports services for children with diabetes and their families in resource- poor communities worldwide. And in collaboration with the International Society for Pediatric and Adolescent Diabetes (ISPAD), IDF has produced the brand new Guideline for Diabetes in Childhood and Adolescence – which covers all diabetes in young people. The desired role of the guideline is not only to assist individual healthcare providers in managing young people with Jean Claude Mbanya is IDF President for diabetes; it aims to improve awareness among governments and state healthcare providers of the essential resources needed for the period 2009 to 2012. He is Professor optimal care. of endocrinology at the University of Yaounde, Cameroon, and Chief of the These activities are vital and our involvement can only increase. But our fight for diabetes will take us further – beyond the diabetes Endocrinology and Metabolic Diseases community. Societies in general must build a concerted response to Unit at the Hospital Central in Yaounde. 4 DiabetesVoice December 2011 • Volume 56 • Special Issue 2 DIABETES VIEWS items – which, although they are essential, are not TYPE 1 DIABETES: easy to come by for everyone – to have a high degree of knowledge and enough confidence to apply that knowledge and the emotional security to be able to handle it all. Providing that support takes time – QUO VADIS? another commodity not always in great supply – and expertise, In this special issue of Diabetes Voice, there is a focus on type from healthcare professionals as well as people with diabetes. 1 diabetes. In tackling the world pandemic of diabetes, and the critical importance of making societal change to arrest the Helping our patients to learn how to manage their life on insulin staggering rise in the prevalence of type 2 diabetes, it is easy for injections is too important to leave to chance or to random, well- the needs of the 10% of people with diabetes who have type 1 meaning interventions of unproven validity. It needs resourcing. On diabetes to be forgotten. Yet incidence of type 1 diabetes is also pages 16 to 28, we look at the globalization of one strategy for helping rising – at 3% per year (see page 6) - and as Professor M'Banya people with type 1 diabetes to live more healthily, using structured points out in his editorial, people with type 1 diabetes worldwide education to help patients use insulin flexibly.