Global perspectives on Volume 59 – September 2014

The diabetes journey – every step counts 15 28

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International Diabetes Federation All correspondence and advertising enquiries link to third-party websites, which are not under Promoting diabetes care, prevention and should be addressed to the Managing Editor: IDF’s control. The inclusion of such links does not imply a recommendation or an endorsement by a cure worldwide International Diabetes Federation, Chaussée de IDF of any material, information, products and La Hulpe 166, 1170 Brussels, Belgium services advertised on third-party websites, and IDF disclaims any liability with regard to your access Diabetes Voice is published quarterly and is Phone: +32-2-538 55 11 – Fax: +32-2-538 51 14 of such linked websites and use of any products or freely available online at www.diabetesvoice.org. services advertised there. While some information © International Diabetes Federation, 2014 – All This publication is also available in French and in Diabetes Voice is about medical issues, it is not rights reserved. No part of this publication may medical advice and should not be construed as such. Spanish. be reproduced or transmitted in any form or by any means without the written prior permis- ISSN: 1437-4064 Editor-in-Chief: Rhys Williams sion of the International Diabetes Federation (IDF). Requests to reproduce or translate IDF Cover photo : © GavinD, Istockphoto.com Managing Editor: Olivier Jacqmain, publications should be addressed to the IDF [email protected] Communications Unit, Chaussée de La Hulpe Editor: Elizabeth Snouffer 166, B-1170 Brussels, by fax +32-2-5385114, or Editorial Assistant: Agnese Abolina by e-mail at [email protected]. Advisory group: Pablo Aschner (Colombia), The information in this magazine is for information Ruth Colagiuri (Australia), Maha Taysir Barakat purposes only. IDF makes no representations or (United Arab Emirates), Viswanathan Mohan warranties about the accuracy and reliability of any (India), João Valente Nabais (Portugal), Kaushik content in the magazine. Any opinions expressed Ramaiya (Tanzania), Carolyn Robertson (USA). are those of their authors, and do not necessarily represent the views of IDF. IDF shall not be liable Layout and printing: Ex Nihilo, Belgium, for any loss or damage in connection with your use www.exnihilo.be of this magazine. Through this magazine, you may Contents

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Diabetes Views 4 Creating networks for enhanced diabetes care in Kuwait and Scotland 40 Abdullah Ben Nakhi and Andrew Morris News in Brief 8 Hype or hope for diabetes mobile health applications? 43 Joyce Lee global campaign World Diabetes Day 2014 – healthy eating clinical care and diabetes 15 Lorenzo Piemonte Debate: Self-monitoring of blood glucose by people with 47 Prioritising diabetes care and awareness Jeffrey Stephens, Kerstin Kempf, Lutz Heinemann in Uzbekistan 18 and Stephan Martin Nilufar Sh. Ibragimova Surviving diabetes in Northern India 52 Youth Diabetes Action 21 Santosh Gupta and Stuti Srivastava Joanna Hotung and Kester Wan Can we get it right for youth with type 2 diabetes? 58 UN members reaffirm need to prioritise NCDs 24 William V. Tamborlane, Katrina Ruedy, Michelle Aneta Tyszkiewicz and Elizabeth Snouffer Van Name and Georgeanna J. Klingensmith

health delivery Diabetes in society Getting it right for kids with diabetes – everywhere 28 Diabetes Voices: What I wish my doctor had told me Graham Ogle when I was diagnosed… 62

Getting it right for people with LADA 31 The most difficult issues to tackle at diagnosis and Ernesto Maddaloni and Paolo Pozzilli in the first year of diabetes 68 Getting it right for people with MODY 33 Andrew J. Drexler Rhys Williams Time to do more for diabetes: Clinical inertia and VOICEBOX 70 how to beat it 36 David Strain on behalf of the Time2DoMoreTM Steering Committee

September 2014 • Volume 59 • Issue 3 DiabetesVoice 3 Diabetes views IDF’s global village

It’s relatively common to speak of the “global same roof, our highly vocal and justifiable demands village” today. The growth of technology like unify and strengthen our bonds and ambitions. the Internet and mobile devices helps shrink the distance between any two points on the On a local level, IDF’s advocacy pushes for map, opening communication between diverse progressive diabetes care, accessible medicines populations. In more specific terms, the global such as and access to wholesome food and village brings people together and fosters awareness exercise so essential for healthy lives. IDF effectively on important issues affecting our world, such as communicates local needs while also bridging the the global burden of diabetes. gap for human rights and ensuring diabetes remains high on the political agenda worldwide. Today, estimates from the IDF Diabetes Atlas indicate that there are 382 million people living Topping our list of priorities for the IDF “family” with diabetes worldwide and by 2035, 592 million is the support of all children and youth living with people or one person in ten will have the disease. or at risk of developing type 1 or type 2 diabetes. Within one generation, the number is expected to Diabetes in childhood is a global public health increase to almost 500 million people worldwide. issue with an estimated 79,000 children under the More than 50% of people living with diabetes do age of 15 developing every year. In not know it. adolescents, type 2 diabetes is on the rise, caused by poor nutrition and unhealthy environments. Many The International Diabetes Federation (IDF) is at of these children face barriers to education and the forefront of the battle to end diabetes, but we endure discrimination in the school environment. couldn’t be effective or successful without your participation in IDF’s global village. IDF in collaboration with the International Society of Paediatric Adolescent Diabetes (ISPAD) and Spanning our world from Melbourne to Mumbai to Sanofi Diabetes launched the Kids & Diabetes in Mexico City, IDF’s global village is a diverse “family” Schools (KiDS) project in India 2013 and efforts connected by our commitment to end the diabetes have been impressive. This summer the project pandemic. Although we may not live under the was also launched in Brazil. Our objective is to

4 DiabetesVoice September 2014 • Volume 59 • Issue 3 Diabetes views

defeat discrimination and stigma in schools by This year, we are continuing our important dialogue providing diabetes education sessions for teachers about eating healthily with the World Diabetes Day and children on diabetes prevention, healthy (WDD) 2014 campaign “Go Blue for Breakfast”. lifestyle choices and diabetes self-management. The IDF needs your help to build greater awareness project’s Diabetes in Schools Information Packs have by organising a healthy breakfast activity in your been distributed as a part of the education process. local community. “Go Blue for Breakfast” highlights As from September the Packs will be available for the importance of eating healthily while helping download online in English and in near future to prevent type 2 diabetes and avoid serious translated in various languages. complications. Recipes from all over the world will be featured online, including recipes from celebrity IDF gets up-close and personal, too. IDF.org chefs and other notable supporters. We hope to see provides a powerful medium for individuals to what your healthy breakfast is all about, too. speak out and be heard on issues related to their diabetes diagnoses, treatment, and even challenges, Be a part of the IDF global village and get involved, like what’s healthy for breakfast! speak out and give us your feedback!

Michael Hirst President, International Diabetes Federation

September 2014 • Volume 59 • Issue 3 DiabetesVoice 5 Diabetes views Getting it right – all the way

A journey of a thousand miles begins with a single contribution illustrates. We have no real idea as step – so the saying goes. The diabetes journey yet how many children die in these circumstances. begins with the diagnosis and to get that journey started in the right direction it has to be the right Even when the diagnosis of diabetes seems diagnosis, not only whether or not it’s diabetes but straightforward, there are important subtleties – also exactly what type of diabetes is it? As articles might it be LADA (latent autoimmune diabetes in in this Issue make plain, the wrong diagnosis will adults), a form of type 1 diabetes which may seem get that journey off to a very bad start. initially to be type 2 or MODY (maturity onset diabetes of the young) a form of type 2 diabetes Worst of all is for a child with type 1 diabetes which may masquerade as type 1. Knowing for to be misdiagnosed or to have the diagnosis sure will make a difference in terms of therapy and significantly delayed. Many parents of type 1 may even provide some insight into the likelihood children have felt reassured, then puzzled, then of distant complications. outraged by the clear signs and symptoms in their children being overlooked when a timely When the diagnosis of diabetes has been made, (and simple) blood or urine test would have there are a number of therapeutic options available taken things in the right direction. Too often, the and a number of evidence-based guidelines to initial diagnosis is made when the child is already provide the best sequence of these and the criteria in life-threatening diabetic ketoacidosis. This for moving from one regime to the next. The ideal happened to the eight year-old son of Sarah Dyer scenario is for patients and healthcare professionals Dana and to our Diabetes Voice Editor – two of to identify the need to move on (on the basis

this Issue’s “Diabetes Voices” contributors. They of inadequate or deteriorating HbA1c levels, for were eventually correctly diagnosed. However, example) and to move on to the next therapeutic in developing countries when other childhood stage at once. Several recent studies show that this illnesses are much more common, type 1 diabetes ideal is seldom realised. “Clinical inertia” and how may not even be thought of, as Graham Ogle’s to reduce it is the subject of the Time2DoMoreTM

6 DiabetesVoice September 2014 • Volume 59 • Issue 3 Diabetes views

study featured in these pages. The first of its her physician, periodic therapeutic re-appraisals references is to a retrospective cohort study by should be undertaken jointly so that treatment can Kamlesh Khunti et al, published in Diabetes Care be intensified in a timely manner – not a startling in 2013. In their examination of the records of over revelation perhaps but it’s a pity this point has to 80,000 people with type 2 diabetes in the UK, it be made over and over again. is evident that there were significant delays in the intensification of therapy despite clear indications The “Diabetes Voices” contributions to this Issue that such intensification was necessary. Median include a number of examples of a failure to be time to initiation of insulin therapy in people given the information to understand the full already treated with three oral hypoglycaemic implications of the diagnosis of diabetes at the agents was six years after the recording of an time of that diagnosis. Should it have taken 16

HbA1c result which clearly suggested that such years and impending quadruple by-pass surgery initiation was needed. The effects of such delays for John Morrison to begin his education about in terms of the increased risk of complications diabetes? I suspect that his experience is not that and their personal and financial costs have still unusual. to be reported.

The main message from the Time2DoMore study is that, in the partnership which should exist between the person with diabetes and his or

Rhys Williams is Emeritus Professor of Clinical Epidemiology at Swansea University, UK, and Editor-in-Chief of Diabetes Voice.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 7 News in brief IDF recognises volunteer excellence

The International Diabetes Federation (IDF) has launched an award programme to honour its dedicated volunteers. The Awards Nomination Committee, chaired by Anne Belton, has selected one outstanding volunteer for the IDF Global Award and five exceptional volunteers from each of the IDF Regions for the Regional Awards.

IDF is proud to acknowledge the following indi- viduals and thanks them for their tireless efforts to promote diabetes care, prevention and a cure worldwide.

Global Award Professor Morsi Arab (see photo) for his outstand- ing work globally in the field of diabetes and for his work as President of the Egyptian Diabetes Association (EDA).

Regional Awards ■ IDF Africa Region: Dr Marguerite De Clerck, Democratic Republic of Congo ■ IDF North America and Canada Region: Ms Zobida Ragbirsingh, Trinidad and Tobago ■ IDF South and Central America Region: Dr Aracely Basurto Calderón, Ecuador ■ IDF Western Pacific Region: Professor Yutaka Professor Morsi Arab, President of the Seino, Japan Egyptian Diabetes Association (EDA) ■ IDF Europe Region: Dr Frederick Holland, UK

8 DiabetesVoice September 2014 • Volume 59 • Issue 3 News in brief

IDF's response to the European Commission’s Green Paper on mobile health

In many countries in Europe, mobile phone education; and blood glucose monitoring and penetration rates have reached or surpassed management. 100%. More recently, smartphones, tablets and “phablets” have considerable computing IDF believes that mHealth, when integrated power changing the way we live, work and into existing health services, cuts across socio- play. Our social, political and legal systems economic, cultural and geographic barriers have barely begun to adapt to the new reality, and leads to improved access and provision of realise the potential, and reap the benefits. more cost effective quality healthcare. Our healthcare systems are no exception, although they can benefit immensely. However, we see a number of challenges in regulation, acceptance and service effective- On average, a person with diabetes will be in ness that are slowing the adoption of mHealth, a physician’s care for ten hours in a year. For and suggest appropriate policy action: the rest of the year, they are on their own. ■ IDF calls for the European Commission (EC) However, people with diabetes are with their to facilitate research to develop an appropri- mobile devices constantly and, most signifi- ate evaluation or certification framework. cantly, are using them for more than just com- ■ IDF calls on the EC to develop device ap- munication capabilities. For many of us (and propriate policies and guidelines to strike a especially young people), mobile phones have balance between individual rights and con- become a principal companion and gateway cerns and the greater public health good. for our lives. Our health systems would be ■ IDF seconds the call for sensible, patient remiss if they did not put these capabilities friendly mHealth innovation, and calls on the to use to make our people healthier. EC and European policy makers to support open systems and interoperability initiatives. Connected health solutions are no substitute for high quality and affordable healthcare delivered IDF stands ready to support the European by professionals, but the International Diabetes institutions in dissemination and awareness Federation (IDF) believes that mHealth can raising of any policy and other action that play a supportive role and have a consider- will further advance the adoption of sensible able impact on diabetes especially for lifestyle mHealth technologies that will help people interventions and prevention; coaching and with diabetes or at risk.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 9 News in brief Oman hosts 4th Diabetes in Asia Study Group (DASG) Conference

Honorary Conference Chair with the Faculty of DASG-2014

The 4th Diabetes in Asia Study Group (DASG) management and prevention strategies for diabetes. Conference was held in Muscat, Oman from May The 4th DASG Conference was an important medi- 1-3, 2014 with support and cooperation from the cal assembly aiming to provide a common platform Oman Ministry of Health. An assembly of interna- for regional healthcare professionals to share the tional and regional speakers participated in the con- latest updates in diabetes care. ference which focused on key diabetes care issues in Asia. Highlights included updates in paediatric In 1999, a group of like-minded clinicians, research- diabetes and microvascular and macrovascular ers and healthcare professionals started a series of complication management. Advanced topics fea- Diabetes in Asia Conferences to discuss regional issues tured approaches in tissue and cell therapy, pancre- in diabetes care. The group formally assembled in atic transplantation and bariatric surgery. Primary Cape Town during the 19th World Diabetes Congress prevention was also given due importance. Faculty on December 2, 2006 to establish the Diabetes in Asia members concluded the conference with a plan to Study Group. DASG aims to promote awareness of formulate regional, national and ethnic specific diabetes, encourage research, promote exchange of guidelines for risk factor assessment, diagnosis, opinions and foster advocacy within Asia.

10 DiabetesVoice September 2014 • Volume 59 • Issue 3 News in brief Singapore hosts IDF-WPR and AASD November 2014

Singapore is proud to be hosting the 10th International Belgium, Takashi Kadowaki from Japan, Jonathan Diabetes Federation-Western Pacific Region (IDF- Shaw from Australia, and Yoon Kun Ho from Korea. WPR) Conference and the 5th Asian Association for Clinicians and researchers can present their work the Study of Diabetes (AASD) Meeting from the and landmark studies for discussion and interaction 21st to the 24th of November. Singapore marks the during oral presentations. second joint meeting in history which is a terrific opportunity for shared learning and networking Topic highlights include “A critical look at SGLT-2 in one of the most beautiful cities in the world. inhibitors” and “Autoimmunity and anti-inflamma- Combining the basic science and molecular research tory therapy in type 1 diabetes”, as well as “Tackling from AASD and the clinical and lay aspects of diabetes in Asia” and “Adiponectin, FGF21 and meta- diabetes so characteristic of IDF meetings ensures bolic homeostasis.” there will be something for everyone! There is an opportunity for interaction through the The Western Pacific Region is the largest of the poster presentation exhibition as these will be avail- IDF Regions and the most diverse economically, able to see throughout the three day programme. politically and culturally. The conference promises The conference will be held in the heart of the to be a virtual melting pot for scientific exchange city of Singapore at the Singapore International of diverse information from around the Region. Convention and Exhibition Centre, within walking There will be four concurrent tracks to appeal to distance from hotels, and near to the internationally different interests as well as an exhibition by indus- renowned Formula One circuit and the spectacu- try to showcase the latest in diabetes innovations lar Gardens by the Bay. Come, be fascinated and and pharmaceuticals. Each scientific track offers entertained in “The Lion City.” a mix of symposia by both international and re- gional speakers including Chantal Matthieu from Register at www.idfwpr2014.org/

September 2014 • Volume 59 • Issue 3 DiabetesVoice 11 News in brief

Publisher launches its first diabetes-friendly gourmet restaurant guide

Zucsu, a new Belgian association that promotes In addition to that, some restaurants provide the healthy eating for people with diabetes, with the glycaemic counts for a selection of dishes; they fall support of the Flemish Diabetes Association in the second category. (Diabetes Liga), and Gault&Millau, the famous restaurant guide publisher, has released its first The third level is granted to restaurants that display gourmet restaurant guide for people with diabetes the amount of carbohydrates and the glycaemic and those wishing to eat healthy. index for entire menus.

With a team of experts, dieticians and nutritionists, The Zucsu team will continue providing informa- Zuscu (abbreviation for sugar in various languages: tion to those restaurant owners willing to move to- Zucker, Zucchero, Sugar, Sucre, Suiker) has assessed wards services which cater to people with diabetes menu options and information given to customers and those in search for healthy eating. with diabetes in 150 restaurants. In addition to this ranking, the guide contains many practical ques- The aim of the guide is to lead people with diabetes tions answered by nutritional experts. towards restaurants that are aware of diabetes- specific diets and offer healthy meals in general. There are three categories of restaurants highlighted Its ambition is to bring together people with dia- in this guide: betes and chefs in order to improve the diabetes knowledge of all the food industry stakeholders. The first level is for restaurant that offer flexibility and give special attention to people with diabetes.

For more information, visit www.zucsu.com and www.gaultmillau.be.

12 DiabetesVoice September 2014 • Volume 59 • Issue 3 News in brief

on the Bookshelf

Global Health Perspectives in Pre- better, happier, and more productive at school. In diabetes and Diabetes Prevention a supportive school environment, where school By Michael Bergman (Author, Editor) personnel understand the needs of students with 400 pages, English, World Scientific Publishing diabetes, young people can manage their diabetes Company (August 30, 2014) effectively. In this updated edition, you will find This comprehensive text addresses the global dia- new and revised information on topics, including: betes epidemic and describes diverse worldwide effective diabetes management, diabetes equip- prevention initiatives. Background chapters describe ment and supplies for blood glucose monitoring the diagnosis and definition of diabetes, the epide- and administering insulin. miology, pathophysiology of pre-diabetes as well as clinical trial evidence for diabetes prevention and treatment. Furthermore, the critical role of govern- ment in formulating a global health agenda, policy Hypoglycaemia in Clinical Diabetes perspectives for European initiatives, the importance By Brian M. Frier, Simon Heller, Rory McCrimmon of nutritional policies for diabetes prevention as well 400 pages, English, Wiley-Blackwell; 3rd edition as the development of the necessary capacity and (January 28, 2014) infrastructure for diabetes prevention are described. Hypoglycaemia in Clinical Diabetes provides ex- pert clinical guidance to this extremely common and potentially serious complication associated with Helping the Student with Diabetes diabetes management. With reference to ADA and Succeed EASD guidelines throughout, topics covered include By U.S. Department of Health the physiology of hypoglycaemia, its presentation 152 pages, English, CreateSpace Independent and clinical features, potential morbidity and op- Publishing Platform (January 27, 2014) timal clinical management in order to achieve and This guide has been written to ensure all students maintain good glycaemic blood glucose control. with diabetes are educated in a medically safe Particular attention is paid to the way hypogly- environment and have the same access to edu- caemia is managed in different groups, such as cational opportunities as their peers. Research the elderly, in children, or during pregnancy. New shows that well-managed blood glucose levels not chapters in this edition include the psychological only can help young people stave off the long-term effects of hypoglycaemia and the latest develop- complications of diabetes but also help them feel ments in technology for hypoglycaemia.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 13 News in brief

Volume 1 Issue 1 September 2013 ISSN 0379-0738 Currently in

DIABETES Diabetes Research RESEARCH AND CLINICAL PRACTICE Official Journal of the International Diabetes Federation and Clinical Practice

From pancreatic islet formation to beta-cell regeneration

The double burden of diabetes and tuberculosis – Public health implications

Serum uric acid levels and incidence of impaired fasting glucose and type 2 diabetes mellitus: A meta-analysis of cohort studies

Evidence-based management of hyperglycemic emergencies in diabetes mellitus DRCP is the official journal of IDF. The following articles have appeared recently or are about to appear in that journal. Access information can be found in the QR code.

TIME TO DO MORE: ADDRESSING Also on the topic of “clinical inertia”: “In order to CLINICAL INERTIA IN THE improve future diabetes care, it will be necessary MANAGEMENT OF TYPE 2 to address existing problems such as limitation of DIABETES MELLITUS resources, inadequate management of hypergly- Strain WD, Cos X, Hirst M, et al. Diabetes Res Clin Pract caemia, and inappropriate education of health- 2014; published online 23 June 2014, doi:10.1016/j. care team members and people with diabetes. diabres.2014.05.005 Achieving these goals will require collaborative efforts by many individuals, groups and organisa- Quoted as one of the references in David Strain’s tions. These include policymakers, international article on the Time2DoMoreTM study featured in this organisations, healthcare providers, those respon- Issue, this paper provides a more comprehensive sible for setting medical school curricula, patients account of the survey and its findings. and society as a whole.” “The principal findings of this survey suggest that impairments in communication are at the heart of clinical inertia. This manuscript lays out four RISK ASSESSMENT TOOLS FOR key principles that we believe are achievable in all DETECTING THOSE WITH PRE- environments and can improve the lives of people DIABETES: A SYSTEMATIC REVIEW with diabetes.” Barber SR, Davies MJ, Khunti K et al. Diabetes Res Clin Pract 2014; 105: 1-13.

CALL-TO-ACTION: TIMELY AND “Eighteen tools met the inclusion criteria. ... Several APPROPRIATE TREATMENT risk scores are available to identify those with pre- FOR PEOPLE WITH TYPE 2 diabetes. Before these are used in practice, the level DIABETES IN LATIN AMERICA of calibration and validity of the tools in the popula- tion of interest should be assessed.” Escalante M, Gagliardino JJ, Guzmán, et al. Diabetes Res Clin Pract 2014; 104: 343-52.

14 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN World Diabetes Day 2014 – healthy eating and diabetes

Lorenzo Piemonte

The latest estimates from the IDF Diabetes Atlas Key messages of the campaign aim to raise aware- indicate that there are 382 million people living ness about how healthy choices can be the easy with diabetes worldwide. By 2035 592 million choices, showing the various steps that individuals people or one person in ten will have the disease. can take to make informed decisions about what A further 316 million people are currently at high they eat and the benefits of a healthy and balanced risk of developing type 2 diabetes, with the number diet for all age groups. Special focus is placed on expected to increase to almost 500 million within a the importance of starting the day with a healthy generation. What makes the pandemic particularly breakfast and this is reflected in the new visual that menacing is that throughout much of the world, has been created for the campaign. it remains hidden. Up to half of all people with diabetes globally remain undiagnosed. The 2014 campaign is asking everyone to “Go Blue for Breakfast” in November by organising a These facts and figures reiterate the importance of healthy breakfast activity in their local community urgent action. Most cases of type 2 diabetes can be to highlight the importance of eating healthily to prevented and the serious complications of diabe- help prevent type 2 diabetes and avoid serious tes can be avoided through healthy lifestyles and complications. living environments that encourage and facilitate healthy behaviour. Individuals and organisations can join the campaign by recruiting friends, family, colleagues or members The World Diabetes Day 2014 campaign marks the together in a public place in their town or city for a first of a three-year (2014-16) focus on healthy liv- healthy breakfast to mark World Diabetes Day on 14 ing and diabetes. This year's activities and materials November 2014. Recognition will also be given to emphasise the importance of healthy eating both for those who organise events during the entire month the prevention of type 2 diabetes and the effective of November. All participants are encouraged to management of diabetes to avoid complications. wear blue, the colour of the global symbol for dia-

September 2014 • Volume 59 • Issue 3 DiabetesVoice 15 betes awareness – the blue circle – and to use the can submit it online by listing the ingredients, event(s) as an opportunity to increase awareness of measurements and cooking method and providing diabetes within their local communities. a picture. The platform currently features recipes from Argentina, India, Mexico, Spain and the USA. Once an activity is confirmed, it can be submitted on IDFs custom online platform – goblueforbreak Other International Diabetes Federation (IDF) fast.worlddiabetesday.org – which features a map initiatives for World Diabetes Day 2014 include the of the world displaying all the healthy breakfast launch of the first WDD mobile app, dedicated to events that will be taking place. The number of strengthening awareness of the blue circle. Available participants submitted for each event will con- on the iOS and Android platforms, the app will tribute to filling the blue circle in the centre of allow users to take “selfies” with the blue circle or the platform. The aim is to reach the largest total display the symbol on any image of their choice. possible in support of the 382 million people with diabetes and the many more at risk. World Diabetes Day 2014 also sees the continuation of the ever-popular Pin a Personality campaign The “Go Blue for Breakfast” platform is also show- which invites prominent individuals from all walks casing healthy breakfast recipes from around the of life to wear the blue circle pin in support of the world. Anyone who has a healthy recipe that they diabetes cause. Hundreds of pinned personalities would like to share with the global community from the four corners of the world are currently

16 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN

visible on the IDF website and anyone can partici- pate in the initiative by requesting pins online at www.idf.org/worlddiabetesday/pin-personality.

IDF will specifically mark World Diabetes Day 2014 with the release of the latest global diabetes prevalence estimates from IDF Diabetes Atlas. These continue to serve as information and in- spiration for worldwide diabetes advocacy and awareness. This will be complemented, as men- “Breakfast Baked Apples” tioned in the President’s editorial, by the launch of “diabetes aware” cities. This is an IDF initiative in recipe by Celebrity Chef and IDF Blue partnership with the European Connected Health Circle Champion Charles Mattocks Alliance (ECHA) that aims to maximise diabetes Serves 4 prevention and awareness through the creation of a global network of cities committed to a healthy Ingredients urban environment. ■ 4 medium apples (use “McIntosh”, “Rome”, not “Red Delicious”) ■ 1/2 cup water ■ 1 1/2 tbsp blue agave syrup ■ 1 oz chopped walnuts ■ 1 oz raisins ■ 1 tbsp cinnamon ■ 1 tbsp dried orange peel

Steps 1. Preheat oven to 180°C (350°F). 2. Core the apple and put them in a 8x8 inch glass baking pan. Pour the water into the bottom of the pan. 3. Combine syrup, walnuts, raisins, cinnamon, and orange peel. Spoon the mixture into the holes in the apples. 4. Bake until the apples are soft.

Let cool and eat.

Lorenzo Piemonte Lorenzo Piemonte is IDF Communications Coordinator.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 17 GLOBAL CAMPAIGN Prioritising diabetes care and awareness in Uzbekistan

Nilufar Sh. Ibragimova

18 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN

The Tashkent Charity Public Association of rest of the world. The number of people living with the Disabled and People with Diabetes Mellitus diabetes in Uzbekistan has nearly doubled in the (UMID) was founded in 2002 to protect, inform last 15 years (to more than 140, 000) of which 80% and advocate the interests of people with diabetes in have type 2 diabetes. According to epidemiologi- Uzbekistan. UMID promotes awareness related to cal studies, the prevalence of diabetes is 5-6% in early diagnosis, primary and secondary prevention Uzbekistan but the prevalence of diagnosed dia- of diabetes and complications of diabetes in order betes is only around 0.45%. to improve the quality of life for people living with diabetes in Uzbekistan. In support of our objectives UMID conducts a number of activities giving priority to improving While UMID is committed to improving diabetes specialised care and maximising diabetes awareness awareness and care, challenges exist. In Uzbekistan, with national campaigns. During 2010-2013 and in the rise in diabetes prevalence is on par with the cooperation with Uzbekistan’s Ministry of Health (MoH RUz), UMID trained 1,171 primary care specialists and 256 volunteers for special events. Since 2006, UMID’s World Diabetes Day (WWD) events offer free consultative and diagnostic medi- cal assistance for needy people with diabetes in oph- thalmology, cardiology, endocrinology-including blood glucose testing, neurology, podiatry and vascular examinations. From 2011-2013, 667 peo- ple were treated during these events. On an annual basis, UMID organises regional mobile screening campaigns with the help of Uzbekistan’s leading diabetes experts. From 2010-2013, 3,349 people in nine regions were screened for diabetes. We consider these powerful achievements.

In 2006, the National Diabetes Registry was launched although it does not cover 100% of all people with diabetes. UMID believes further de- velopment of the Registry is necessary to obtain exact statistical data. In 2012, 13,637 people were diagnosed with diabetes, of whom nearly 85% (11,394) were diagnosed with type 2 diabetes. However, results of UMIDs screening campaign showed that more than 60% of people with diabe- tes were diagnosed following complications. This data reflects a greater need for earlier diagnosis of impaired glucose tolerance (IGT) and type 2 diabetes. UMID believes this is in part due to the National Diabetes Programme’s lack of focus on

September 2014 • Volume 59 • Issue 3 DiabetesVoice 19 GLOBAL CAMPAIGN

Training session for regional General Practitioners and Nurses in Tashkent region, Uzbekistan

the primary prevention of diabetes. Low levels of these projects there was a significant reduction in awareness exist among general practitioners and diabetic retinopathy and foot ulcer. In addition, specialist physicians. Unfortunately, a low level of the MoH revised current standards of diagnostics public awareness, on diabetes in general, exists in and algorithms and implemented step-by-step Uzbekistan. care guidelines for people living with diabetic retinopathy and foot ulcers from the primary care In an effort to change the current situation, the level to the specialised centre. government of Uzbekistan is slowly taking no- tice. Recently, the government dedicated greater Since the start of 2014, UMID has been facilitating attention to the health of our population and the another WDF project, “Prevention of diabetes in younger generation, including diabetes preven- the rural population of Uzbekistan” aimed at sus- tion. The government declared 2014 as the year pending the growth of diabetes in six pilot regions of the Healthy Child to improve the current state of Uzbekistan. In order to achieve better outcomes of health for children and adolescents. Further for people with diabetes in Uzbekistan, the key on-going efforts are addressing diabetes chal- strategy will be to progress the National Diabetes lenges; blood glucose measurements are given Programme for enhancing diabetes prevention to all populations once a year irrespective of age and care, but in the meantime UMID will be on in clinics around the country. In addition and in the battle lines fighting for change. cooperation with MoH RUz UMID facilitated two World Diabetes Foundation (WDF) pro- jects during the period 2008-2012: “Prevention of blindness in people with diabetes in Uzbekistan”, Nilufar Sh. Ibragimova and “Prevention of amputations of lower limbs in Nilufar Sh. Ibragimova is Chair of Tashkent Charity Public Association of the Disabled and People with DM "UMID", Uzbekistan. people with diabetes in Uzbekistan”. As a result of

20 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN Youth Diabetes Action

Joanna Hotung and Kester Wan

Diabetes in Hong Kong children is on the increase. that no child in Hong Kong should be held back With an average of seven children per month now because of diabetes. being diagnosed with type 1 or type 2 diabetes, particular efforts are being made to address this The association increasingly significant problem. At the most YDA is a charity set up in 2001, formerly called the recent fundraiser for Hong Kong’s Youth Diabetes Hong Kong Juvenile Diabetes Association (HKJDA), Action (YDA), Dr Ko Wing Man, the Hong Kong dedicated to supporting children and adolescents Government’s Secretary for Health, pledged the with diabetes and their families in Hong Kong. government’s support for the charity and its goal It was formed from small beginnings. Thanks to the encouragement and support of paediatric endocrinologists and nurses, a number of par- ents came together to form this group. Current Chairperson, Fina Cheng, Vice-Chairperson, Raymond Choi, and Chairperson Emeritus, Joanna Hotung, are all parents of children with type 1 diabetes.

YDA advocates for children and adolescents with diabetes; improving communication with and support to these young people and their families; Diabetes youth camp promoting community awareness and knowledge of diabetes’ effect on the young; and organising,

September 2014 • Volume 59 • Issue 3 DiabetesVoice 21 GLOBAL CAMPAIGN

World Diabetes Day 2013 Press Conference in Hong Kong

promoting, and executing educational, social, One of the ironies of the Hong Kong government and other programmes for affected families and medical system is that insulin is available for free but the public. the means required to deliver it are not. For finan- cially needy families, a successful ongoing Sponsor What is working well a Child programme provides financial assistance As a parents’ organisation originally, YDA un- for them to buy these medical supplies, including derstands better the needs of children who are glucometers, strips, syringes, lancets, alcohol swabs, diagnosed with diabetes and the challenges their and other ongoing and expensive supplies. parents face. Diversified activities are organised, including youth camps, cooking classes, outdoor Challenges activities, and regular exercise. Children with In Hong Kong, there are minimal resources allo- diabetes have a chance to make new friends in cated to the care of children with diabetes. There is a relaxed environment and establish supportive no registry for youth with type 1 or type 2 diabetes, peer networks. Parents are encouraged to join which makes it difficult to assess the size of the regular tea gatherings to share experiences and problem, demographic profile, social impact, and to learn from one another. Whole-family activities develop preventive measures for type 2 diabetes. Few facilitate different families to meet and touch base, hospitals have specialist departments for children with one of the most popular activities being the with diabetes, and paediatric endocrinology and dia- annual Christmas party. betes nurses are rare specialisations. Other challenges

22 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN

include minimal paramedic support in hospitals levels as well as the intense demands of their to coordinate with other disciplines for good case academics and many other activities. While management, such as paediatric diabetes educators, medical attention is important, peer support dieticians, social workers, and clinical psychologists. is also highly effective in providing channels of positive communication among young people. Requirements needed YDA currently has two goals to achieve better The first specialist Hong Kong Children’s outcomes for diabetes care in children within Hospital will open in 2018. This has the poten- Hong Kong. tial to be an excellent venue where high quality 1. A fully staffed centre of excellence for children medical and paramedical services can be mo- and adolescents with diabetes is becoming in- bilised to offer dedicated care to children with creasingly important. Apart from the ongoing diabetes in a specialist department. technicalities of daily diabetes management, there are more cases of psychological difficulty 2. Empowerment and peer support for patients and in young people struggling to cope with the their families are other elements to develop. With unpredictable ups and downs of blood glucose better education and access to the latest technol- ogy, including insulin pumps and continuous glucose monitors (which are still rare in Hong Kong), affected families will be able to take better technical, physical, and emotional care of their children and help them develop the independ- ence to take on effective care for themselves as they grow up.

Care for children with diabetes is unique and de- manding since it requires much collaboration be- tween the parents and medical community. The fear of diabetes and its complications is always in parents’ hearts. The consequences of poor diabetes management do not only worry the parents and children as they grow up, but the price that the community will bear in the future should also not be underestimated.

Joanna Hotung and Kester Wan Joanna Hotung is Chairperson Emeritus of the Youth Diabetes Action, Hong Kong. Kester Wan is Executive Director of the Youth Diabetes Action, Hong Kong. Cooking class Youth Diabetes Action www.youthdiabetesaction.org

September 2014 • Volume 59 • Issue 3 DiabetesVoice 23 GLOBAL CAMPAIGN UN members reaffirm need to prioritise NCDs

Aneta Tyszkiewicz and Elizabeth Snouffer

Global mortality from non-communicable diseases (NCDs) remains unacceptably high and continues to rise despite pressure from World Health Organization (WHO) and the United Nations (UN). As a result, three significant meetings have taken place in May, June and July, with the objective of evaluating progress made since the UN adopted the Political Declaration of the High-level Meeting of the General Assembly on the Prevention and Control of NCDs in 2011, and discussing inclusion of NCDs in the post-2015 development agenda. Diabetes Voice reports on the highlights for each event.

World Health Assembly (10-24 May 2014) At the 67th Session of the World Health Assembly (WHA) in May, the WHO Director-General Dr Margaret Chan, in her opening address to the Assembly, voiced deep concern about increased childhood obesity worldwide and announced the establishment of a high-level Commission on Ending Childhood Obesity. Better global coordination of efforts to address NCDs such as diabetes, cancer, heart disease and stroke was a priority. Dr Margaret Chan, Director-General of WHO, makes her opening statement at the plenary The major milestones of the Global NCD session of the 67th World Health Assembly. Photo: WHO Framework focused on NCD prevention and control and the Global Coordination Mechanism

24 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN UN members reaffirm need to prioritise NCDs

(GCM). However, to express the International and contribute to sustainable development, Diabetes Federation’s (IDF) disappointment on including Health in All Policies as appropriate.1 the plans around the GCM, the NCD Alliance made the following statement to the Assembly: During the Assembly, IDF staged an event entitled “Access to Essential and Affordable Medicines for “The GCM falls significantly short of the vision and All,” which focused on the importance of universal commitments in the 2011 Political Declaration. access to medicine and better care for people Instead, it reinforces a ‘business as usual’ approach with diabetes, including life-saving insulin. The to NCDs and is a missed opportunity.” (Statement discussion was hosted by Sir Michael Hirst, IDF by the Union for International Cancer Control President, moderated by Dr Petra Wilson, CEO on behalf of the NCD Alliance 67th World Health of IDF, and attended by over 60 representatives Assembly Statement – Agenda Item 13.1, May 2014) from different sectors including civil society, governments and WHO. After review of the post-2015 development framework, WHO adopted a resolution (“Health Interactive hearing for civil society (19 June 2014) in the post-2015 development agenda”) urging In June, H.E. John W. Ashe, President of the 68th Member States and the Director-General to reaffirm session of the General Assembly, hosted an informal goals, including: interactive hearing for civil society to discuss the ■ Recognising health as central to the post-2015 successes and gaps in progress since the Political UN development agenda. Declaration of the High-level Meeting of the General ■ Incorporating the need for action to reduce Assembly on the Prevention and Control of NCDs, preventable and avoidable burden of mortality, 2011. The overall theme of the meeting was to morbidity and disability related to NCDs, and assess “progress in implementing the Political injuries while also promoting mental health. Declaration on the Prevention and Control of NCDs ■ Emphasising the need for multisectoral actions and scaling up multi-stakeholder and national to address social, environmental and economic multi-sectoral responses to the NCD prevention determinants of health, to reduce health inequities and control including NCD context in the post-

September 2014 • Volume 59 • Issue 3 DiabetesVoice 25 IGLDFOBA BRILDG CAESMPAIGN

A record 3000 delegates attended the opening of the 67th World Health Assembly on 19 May 2014. Photo: WHO/Violaine Martin

2015 development agenda.”2 At a roundtable was the second time NCDs have had a standalone discussion, Katie Dain, Executive Director of the political meeting at the UN General Assembly, giving NCD Alliance, conveyed the current shortage of an outstanding opportunity to place diabetes high resources as the greatest barrier given only “1.2% of on the international political agenda. the 31 billion Development Assistance for Health is allocated to NCDs.” The meeting resulted in the adoption of a concise, action-orientated and focused outcome document. Approximately 150 civil society representatives It contains a number of clear, time-bound national and 37 Member States attended the hearing. commitments which will build on those in the Going forward, priorities include mobilisation of Political Declaration from 2011, with a specific resources, clear targets for action, and placement of emphasis on national action on diabetes and NCDs. NCDs as a priority in the post-2015 development There was broad agreement that there would be agenda. Outcomes of the hearing served as input ample opportunity for states to begin changing the for the UN High-Level Review on NCDs in July. landscape of NCDs before the next review in 2018.

UN High-Level Review on NCDs (10-11 July 2014) Fulfilling those commitments is key to reversing The UN NCD Review took place on 10th and 11th July the current diabetes and other NCDs epidemic 2014 at the UN Headquarters in New York City. This because, although some progress has been achieved,

26 DiabetesVoice September 2014 • Volume 59 • Issue 3 GLOBAL CAMPAIGN

Hirst also discussed the opportunities on the horizon for influencing the political agenda for NCDs and the role and challenges facing inter- sectoral action to tackle the epidemic.

On the same day, Keegan Hall, President of IDF's Young Leaders in Diabetes Programme, Ms Precious Matsoso, Director-General of the represented IDF at a side event of the Young Ministry of Health of South Africa and Chair of Professionals Chronic Disease Network (YP- Monday’s technical briefing, Dr Margaret Chan, CDN). Hall moderated a panel exploring how to Director-General of WHO, Dr Keiji Fukuda, As- achieve a trade system which prioritises health for sistant Director-General for Health Security. Photo: WHO all. Particular emphasis was placed on access to essential medicines for NCDs in low- and middle- income countries.

it has been insufficient and uneven. This is one of the findings of the recently published WHO Noncommunicable Diseases Country Profiles 2014 report, that provides an updated overview of the NCD situation, including recent trends and government responses in 194 countries.

“I see no lack of commitment. I see a lack of capacity to act, especially in the developing world,” said WHO Director-General Dr Margaret Chan.

Sandeep Kishore, Former Chair of the Young Professional Chronic Disease Network, during a discussion on “Strengthening national and regional capacities” for the prevention and control, including monitoring, of non-communicable diseases, asked the panel, “Respected leaders, can we and should we not do better?”.

Aneta Tyszkiewicz and Elizabeth Snouffer To ensure that diabetes remains high in the Aneta Tyszkiewicz is IDF Global Advocacy Administrator. international political agenda, IDF intensified Elizabeth Snouffer is Editor of Diabetes Voice.

its efforts to put diabetes on the spotlight at the References Review. The day before the meeting, IDF President 1. World Health Organization. Health in the Post-2015 Development Agenda. Sir Michael Hirst addressed a civil society briefing Sixty-seventh World Health Assembly. A67/A/Conf./4 Rev.2. http://apps. who.int/gb/ebwha/pdf_files/WHA67/A67_ACONF4Rev2-en.pdf on the Review. Sir Michael focused on the post- 2015 development agenda and how NCDs must be 2. General Assembly of the United Nations. Agenda of the 68th session. www.un.org/en/ga/68/agenda/index.shtml prioritised. Alongside other speakers, Sir Michael

September 2014 • Volume 59 • Issue 3 DiabetesVoice 27 Health Delivery Getting it right for kids with diabetes – everywhere

Graham Ogle

Type 1 diabetes is one of the most common chronic and signs but only by those practitioners who are diseases in childhood, and the number of chil- professionally attuned to the possibility of that dren developing type 1 diabetes is growing rapidly. diagnosis in their patients. The most common of Overall, type 1 diabetes in children worldwide is these symptoms and signs are: increasing 3% annually (79,100), with the greatest ■ Drinking more fluids incidence documented in Europe and the North ■ Passing more urine (and in young children bed- America and Caribbean Region. There is also evi- wetting may resume) dence that indicates similar trends in many other ■ Eating more parts of the world but incidence data and prevalence ■ Weight loss are all but non-existent. ■ Tiredness

The International Diabetes Federation (IDF) Life These progress to become more severe if the for a Child Programme believes that the commonest type 1 diabetes diagnosis is not made. After a few form of death for a child or young adult with type 1 weeks or months, the impact of the untreated diabe- diabetes in the developing world is misdiagnosis. In tes on the body’s metabolism is so extreme that the other words, if a doctor’s awareness level for diabetes blood becomes more acidic and increased urination is low, another condition is diagnosed instead. Any leads to more serious dehydration (this is called “dia- treatment instituted as a result of this misdiagnosis betic ketoacidosis” or “DKA”). DKA presents with is likely to be hopelessly ineffective with regard to vomiting and rapid breathing, and there is often an diabetes and the young person is doomed to die of associated infection that has triggered the episode. If undiagnosed type 1 diabetes. untreated, DKA progresses quickly and will result in death. Even when type 1 diabetes is diagnosed and When a child or young adult develops type 1 diabe- managed correctly, DKA can still be life-threatening, tes, it can be recognised by a classic set of symptoms particularly in lower-resourced settings.

28 DiabetesVoice September 2014 • Volume 59 • Issue 3 health delivery

DIABETES IN CHILDREN AND YOUNG ADULTS KNOW THE WARNING SIGNS

excessive thirst Diagnosis is most often completely missed in coun- frequent tries where type 1 diabetes is uncommon. When urination bed wetting DKA develops as a result of untreated diabetes, hall- mark symptoms such as rapid breathing and vomit- weight ing are often incorrectly diagnosed as malaria, gas- loss lack of troenteritis, typhoid, pneumonia, malnutrition or energy HIV/AIDS as these are more commonly seen.1,2 As In late stages vomiting, dehydration, rapid deep the child, becoming progressively and more severely breathing or coma (ketoacidosis) can occur – consider diabetes in any ill, is referred up the healthcare system, unless type 1 severely ill child or young adult diabetes is recognised, the child will not survive. If anyone shows these signs, check for diabetes immediately. No child should die of diabetes. Treatment is urgent. It was shown first in Parma, Italy,3 and then in Australia4 and elsewhere, that education campaigns A campaign organised by the IDF Life for a Child Programme and the Diabetes Association of Jamaica with funding from the Leona M and Harry B Helmsley Charitable Trust. targeting communities and healthcare profession- als effectively reduce the number of new cases of Figure: Diabetic ketoacidosis (DKA) awareness diabetes that present in DKA. campaign poster.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 29 Health Delivery

The IDF Life for a Child Programme developed Graham Ogle an iconic poster (see Figure) showing the six most Graham Ogle is General Manager of IDF Life for a Child Programme.

common warning signs of type 1 diabetes in chil- To access the awareness posters, please see dren and young people. The six icons displayed www.idf.org/lifeforachild/education-resources/dka-awareness represent excessive thirst, frequent urination, bed- wetting, weight loss, tiredness, and symptoms of DKA including, vomiting, rapid breathing and

coma. The type 1 diabetes “warning signs” aware- References ness poster encourages healthcare professionals 1. International Diabetes Federation. IDF Diabetes Atlas, 6th edn. IDF. Brussels, 2013. and everyone in the community to think of dia- 2. Rwiza HT, Swai ABM, McLarty DG. Failure to diagnose ketoacidosis in Tanzania. betes when they observe these symptoms, or see Diabet Med 1986; 3: 181-3. any very ill child. The poster has been prepared in 3. Makani J, Matuja W, Liyombo E, et al. Admission diagnosis of cerebral malaria many world languages and education campaigns in adults in an endemic area of Tanzania: implications and clinical description. have been successfully completed in 17 countries; QJM 2003; 96: 355-62. an additional six country awareness campaigns are 4. Vanelli M, Chiari G, Ghizzoni L, et al. Effectiveness of a prevention program in progress, with a further 14 countries planning for diabetic ketoacidosis in children. An 8 year study in schools and private to participate in the near future. IDF encourages practices. Diabetes Care 1999; 22: 7-9. every country to conduct appropriate education 5. King BR, Howard NJH, Verge CF, et al. A diabetes awareness campaign prevents diabetic ketoacidosis in children at their initial presentation with type 1 diabetes. campaigns to eliminate these tragic and completely Pediatric Diabetes 2012; 13: 647-51. preventable deaths. No child should die of diabetes.

30 DiabetesVoice September 2014 • Volume 59 • Issue 3 Health Delivery Getting it right for people with LADA

Ernesto Maddaloni and Paolo Pozzilli

In all its forms, diabetes is one of the most prevalent importantly, people with LADA misdiagnosed as non-communicable diseases affecting millions of having type 2 diabetes are wrongly treated as though people around the world. For 2013, the International they have type 2 diabetes. Consistent evidence shows Diabetes Federation estimates that 8.3% of adults the importance, in terms of clinical outcome, of early or 382 million people are currently living with initiation of insulin therapy in LADA, and avoiding one form of diabetes or another. This number is projected to rise beyond 590 million by 2025. At the present time, the burden of diabetes is severe Figure. Autoimmunity, , function causing a range of preventable complications and and their interaction in LADA, type 1 diabetes (T1D) and 1 type 2 diabetes (T2D). Colour intensity corresponds to resulting in more than five million deaths each year. the degree of diabetes type. The central light-coloured lozenge defines overlapping diabetes syndromes. Latent autoimmune diabetes in adults (LADA) is a recognised diabetes entity, with a prevalence ranging T1D= hy+lx+lz LADA= hy+hx+lz from 2% to 12% of all cases of diabetes, with a wide z regional variation.2 LADA is a form of autoimmune diabetes with a later age of onset and a slower progres-

sion towards insulin dependence than is seen in the β-cell function utoimmunity majority of people with type 1 diabetes.3 Classified, A nevertheless, as a variation of type 1 diabetes, LADA

is characterised by the presence of at least one type T2D= ly+hx+hz of islet cell specific autoantibody - most people with LADA show the presence of autoantibodies directed against glutamic acid decarboxylase (GADA), fewer against the protein tyrosine phosphatase IA-2. In the y earlier stages of the disease people affected by LADA x Insulin Resistance are often wrongly diagnosed as having developed LADA Normal type 2 diabetes, as a result of the concomitant insulin T1D T2D resistance state (Figure) and the absence of clinical h=high; l=low information on GADA and other antibodies. More

September 2014 • Volume 59 • Issue 3 DiabetesVoice 31 Health Delivery

the use of secretagogues like sulphonylurea typically Table Type 2 diabetes LADA 4 used for the treatment of type 2 diabetes. Moreover, Prevalence More prevalent Less prevalent recent data suggests a possible role for incretin-based Age at onset Older Younger therapy in the treatment of LADA, especially in BMI Overweight- Normal weight- the early stages of the disease when some beta-cell obese overweight reserve is still preserved. Waist >88cm <88cm Circumference HDL Low High Thus, the early clinical recognition of people af- Triglycerides High Low fected by LADA, as distinct from type 2 diabetes, is Blood pressure High Low extremely important to guarantee the most suitable Metabolic Yes No treatment in order to preserve beta-cell function, syndrome gain optimal metabolic control and improve long term outcomes. of autoimmunity by measuring serum levels of autoantibodies (GADA-65 at least). The difficulty begins at diagnosis because people with adult-onset type 1 diabetes are, at least initially, A correct diabetes diagnosis is the cornerstone usually non-insulin requiring, and for this reason of the right therapy and a wrong diagnosis delays they are hardly distinguishable from people with achievement of optimal metabolic control, frustrates type 2 diabetes. However, several studies have iden- patients and increases the risk of life-changing or tified important clinical features that should suggest fatal complications. the presence of autoimmune diabetes rather than type 2 diabetes.5,6 Subjects affected by LADA are Ernesto Maddaloni and Paolo Pozzilli Ernesto Maddaloni is Doctor at Department of Endocrinology usually younger and leaner at onset of the disease, and Diabetes, University Campus Bio-Medico of Rome, Italy. have higher HDL cholesterol, lower triglycerides Paolo Pozzilli is Professor at Department of Endocrinology and Diabetes, University Campus Bio-Medico of Rome, Italy and and lower blood pressure (Table). In other words, Professor at Centre for Diabetes, Barts and the London School the LADA phenotype is quite far from the “meta- of Medicine, Queen Mary, University of London, UK. bolic syndrome phenotype” so typical of people References with type 2 diabetes. In patients with such clinical 1. International Diabetes Federation. IDF Diabetes Atlas, 6th edn. IDF. Brussels, 2013. features we strongly suggest to screen the presence 2. Guglielmi C, Palermo A, Pozzilli P. Latent autoimmune diabetes in the adults (LADA) in Asia: from pathogenesis and epidemiology to therapy. Diabetes Metab Res Rev 2012; 28: 40-6. Glutamic acid decarboxylase (GAD) is an enzyme which is found in all human cells. It catalyses the 3. Leslie RDG, Williams R, Pozzilli P. Clinical review: type 1 diabetes and latent degradation of glutamic acid, part of the cycle for autoimmune diabetes in adults: one end of the rainbow. J Clin Endocrinol Metab 2006; 91: 1654-9. the disposal of a waste (ammonia) in the body. The presence in the blood of self-antibodies to GAD is 4. Tiittanen M, Huupponen JT, Knip M, et al. Insulin treatment in patients with type an early marker of the process that leads to the 1 diabetes induces upregulation of regulatory T-cell markers in peripheral blood destruction of insulin producing islet cells, and mononuclear cells stimulated with insulin in vitro. Diabetes 2006; 55: 3446-54. thus of type 1 diabetes. 5. Hawa MI, Kolb H, Schloot N, et al. Adult-onset autoimmune diabetes in Europe Sulphonylureas are one of several different classes is prevalent with a broad clinical phenotype: Action LADA 7. Diabetes Care of drug which are used in the treatment of type 2 2013; 36: 908-13. diabetes to lower the level of glucose in the blood. 6. Mollo A, Hernandez M, Marsal JR, et al. Latent autoimmune diabetes in adults is perched between type 1 and type 2: evidence from adults in one region of Spain. Source: Diabetes Voice 2003; 48: 15. Diabetes Metab Res Rev 2013; 29: 446-51.

32 DiabetesVoice September 2014 • Volume 59 • Issue 3 Health Delivery Getting it right for people with MODY

Rhys Williams

The overwhelming majority of the estimated MODY is thought to affect 1% to 2% of individuals 382 million people currently living with diabetes with diabetes2 though it probably goes unrecognised worldwide1 are among that number as a result in many instances. Its three main features2 are that: of complex interactions between their genes and ■ diabetes often develops before the age of 25; their environments. Certainly for the majority of ■ there is usually a clear family history of diabetes those with type 2 diabetes and probably also for in successive generations and those with type 1 diabetes, genetic predisposition ■ treatment may be by diet or oral hypoglycaemic is the result of many genes. It is polygenic. For a agents and does not always require insulin minority of the 382 million, however, diabetes is treatment. the result of a single gene. An important group of this monogenic diabetes is MODY – maturity It was initially thought that this type of diabetes onset diabetes of the young. MODY is important conferred protection from complications (it scientifically because it provides precise insights was sometimes referred to as “mild diabetes of into the mechanism of diabetes in these individuals young onset”3) but, as so often happens, further and important for the individual and healthcare investigation has shown this to be a simplification professionals because knowledge of its presence and freedom from the consequences of long- can guide therapy and provide information about term complications is not a feature of all the likelihood of long term complications. sub-types of MODY.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 33 Health Delivery

Although, in any one individual, MODY is caused by a single gene, six MODY variants are currently described, each the result of a different gene.2 The Table lists these six sub-types, the genes considered to be responsible for each one and their main characteristics. It is likely that these six variants make up 80% to 90% of MODY, at least in European populations, with the Hepatic Nuclear Factor 1 Alpha (HNF1A) gene variant (MODY 3) being by far the most common. All are dominantly inherited with, on average, half of an affected parent’s offspring also affected and, usually, the condition present in each successive generation. MODY is thought to affect 1% to 2% of individuals with diabetes and often develops before the age of 25.

The “MODY Probability Calculator”2 is an on-line aid to the diagnosis of MODY in clinical practice. It requires knowledge of eight parameters. These are listed below (see Box) together with an example of the difference made, to the probability of a patient having MODY, of the presence of diabetes in a parent. Parental diabetes doubles the “positive predictive value” (PPV) of MODY being present (from 24.4% to 58%).

The PPV acts as guide to the likelihood of MODY being found by subsequent genetic testing. Using a PPV threshold of 20% or greater as a basis for further testing (i.e. recommending such a test for the example patient who does not have a family history) would have a 1 in 4 or lower chance of the test being positive. Recommending such a test only for the patient with a family history (i.e. a PPV threshold of 50% or greater) would be more likely to identify that person as having MODY (a 1 in 1.7 chance or lower). Thus the use of the Calculator can minimise unnecessary testing. The finding of antibodies to GAD or IA-2 (see accompanying

34 DiabetesVoice September 2014 • Volume 59 • Issue 3 Health Delivery

Table. The six currently identified sub-types of MODY.

MODY sub-type Affected Gene Characteristics MODY 1 HNF4A Similar characteristics to MODY 3 below but much less common. MODY 2 GCK Blood glucose are “reset” at a higher level than normal, therefore, hyperglycaemia present at birth; symptoms usually absent and com- plications are rare; no pharmacological treatment is required except perhaps in pregnancy. MODY 3 TCF1 Insulin production normal in childhood but decreases with age; micro-vascular and macro-vascular complications can occur; sulpho- nylurea therapy more effective initially than insulin but insulin may be required eventually. The commonest type (70% of all instances of MODY). MODY 4 IPF1 Sulphonylurea therapy more effective than insulin. MODY 5 TCF2 Pre-natal development of cysts in kidneys and other organs; increased risk of developing diabetes which may require insulin. MODY 6 NEUROD1 Very rare – described only in very few families thus far; may require insulin therapy.

Sources: references 2 and 4.

article on LADA) would, of course, establish the The ability to diagnose MODY, distinguishing it from diagnosis of type 1 diabetes in such cases. type 1 diabetes or type 2 diabetes resulting from the metabolic syndrome, will enable better therapeutic Parameters required by the “MODY Probability decisions to be made (oral therapy instead of insulin Calculator”2 for the calculation of the in MODY 3, for example) and may provide some “positive predictive value” (PPV - see text for insight into the likelihood of future complications explanation) of the presence of MODY. of diabetes in any given individual. ■ Age at diagnosis in years ■ Gender ■  Currently treated with insulin or oral hypoglycaemics – Yes / No ■ Time to insulin treatment (if currently treated with insu- lin) – not currently treated with insulin / within 6 months Rhys Williams of diagnosis / over 6 months after diagnosis Rhys Williams is Emeritus Professor of Clinical Epidemiology at ■ BMI (kg/m2) Swansea University, UK, and Editor-in-Chief of Diabetes Voice.

■ HbA1c (% or mmol/mol) ■ Current age (years) References ■ Parent affected by diabetes – Yes/ No 1. International Diabetes Federation. IDF Diabetes Atlas, 6th edn. IDF. Brussels, 2013.

Example: a man, currently aged 35, diagnosed with 2. Diabetes Genes. www.diabetesgenes.org/content/maturity-onset- diabetes at the age of 30, currently treated with insu- diabetes-young lin (commenced more than six months after diagnosis); lean (BMI of 20 kg/m2) and with reasonable glycaemic 3. Tattersall RB. Mild familial diabetes with dominant inheritance.

control (HbA1c of 6.5%) without a parent affected with Q J Med 1974; 70: 339-57. diabetes – PPV = 24.4%. 4. Monogenic Diabetes: MODY (HNF4A, GCK, TCF1, 1PF1, TCF2). A person with the same characteristics but with a pa- Diabetes Reviews in Endocrinology. www.athenadiagnostics.com/ rent affected by diabetes – PPV = 58%. servlet/DownloadServlet?id=2938

September 2014 • Volume 59 • Issue 3 DiabetesVoice 35 Health Delivery Time to do more for diabetes: Clinical inertia and how to beat it

David Strain on behalf of the Time2DoMoreTM Steering Committee

In the study of physics, inertia describes resistance related clinical inertia in six countries: Brazil, India, to movement. When applied to medicine, the word Japan, Spain, UK and USA. A total of 337 doctors inertia similarly describes resistance to change. More and 652 people with diabetes completed an online specifically, it is the difference between the medical questionnaire. From the results obtained, we have care that should be aspired to and what is actually issued four simple statements to physicians and achieved. Studies have shown that clinical inertia another four to people with diabetes that we believe is a common problem in the treatment of type 2 can improve diabetes care around the world. The diabetes1 (Box 1). Despite the availability of more key principles for doctors, defined in DRCP, are diabetes therapies than ever before, almost half of presented in Box 2. Here we will discuss how the those treated still have difficulty controlling their results of the survey impact people with diabetes blood glucose. and lay out the signposts to improve outcomes.

What causes clinical inertia? Diabetes is a complex, progressive disease, mean- Box 1. Definitions of clinical inertia. ing it inevitably needs more treatment as time For those recently diagnosed with type 2 diabetes, cli- progresses. Clinical inertia can occur at any point nical inertia is defined as a failure to start treatment at the most appropriate time (usually at diagnosis). Treat- along the path of diabetes, and it can only be over- ment to lower blood glucose levels usually starts with come by doctors and people with diabetes acting changes to diet and physical activity patterns and may include one or more oral hypoglycaemic agents. together as a team. This is the corner stone of the Time2DoMoreTM project. For those already receiving treatment for type 2 dia- betes, clinical inertia is when treatment is not esca- lated, whether by increased doses, additional tablets The Time2DoMore project was recently published or initiation of insulin, at the most appropriate time 2 (usually when blood glucose levels are above the target in Diabetes Research and Clinical Practice (DRCP). set by physician and patient). This survey investigated the causes of diabetes-

36 DiabetesVoice September 2014 • Volume 59 • Issue 3 diabetes

DIABETES: PROTECT OUR FUTURE www.worlddiabetesday.org diabetes

DIABETES: PROTECT OUR FUTURE www.worlddiabetesday.org

Health Delivery

Clinical inertia often begins at the time of diagnosis time to emphasise the importance of good diabetes Only about a third of the people with diabetes were care to avoid the risk of complications such as heart accepting of their diagnosis, and the majority had and kidney disease, three quarters of people with different reactions (Figure 1). Although doctors took diabetes said that they were not concerned about this risk or thought it was very small. Those who Box 2. Key principles suggested to physicians were, were most concerned about the risk of vision to optimise the management of diabetes.

1. The health outcomes for people with diabetes are a function of the communication between the health- Figure 1. Reactions of persons with diabetes care professionals and people with diabetes acting at diagnosis. as a team. 2. It is the duty of that team to establish realistic shared Scared goals and a contract in order to achieve these objectives. Depressed 3. Individualising care needs to be personalised to all as- pects of the needs of the person with diabetes, not sim- Detached Accepting ply chasing glycaemic, blood pressure, or lipid targets. Nervous ResignedGuilty 4. Purchasers and providers should incentivise good Confused Shocked Positive early disease management in order to optimise qua- lity of life for those people with diabetes.

Figure 2. Persons with diabetes reactions to explanations of complications at diagnosis in the Time2DoMore survey.

25% of the Pakistani population is classified as overweight and obese.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 37 Health Delivery

problems (Figure 2). Further, whereas the majority This simple statement represents one of the most of doctors felt they had sufficiently explained the important factors in the management of diabetes. risk of hypoglycaemia (hypos), fewer than one in ten The management of diabetes that could save one people with diabetes were aware that hypos could be person’s life could literally kill another. Of course, deadly. When asked specific questions about hypos, the physician’s choice can only be as good as the only around one in three people with diabetes said information they are provided with. The best way that they tell their doctor each time that they have a for the person with diabetes to establish individuality hypo and only 3% could answer all seven questions is: “tell your doctor about you”. The solution again correctly (Figure 3). This is an example of a break- is communication. down in communication that could cause problems in diabetes management. The first of our statements Every person with diabetes underpins the key to good diabetes control. is different.

Individualising care What else can the person with diabetes do? The choice of medications for a person with dia- Empowerment through education is an essential betes is based on several factors such as age, other step in improving health. In the Time2DoMore medical conditions and the functioning of the rest survey only approximately half of people planned of the body, particularly the filtering ability of the to adjust their diet and less than 40% would follow kidneys. This brings us to the second statement the advice regarding physical activity, despite almost for improved quality of life of those with diabetes. all physicians (96%) reporting that they recommend

Figure 3. People with diabetes responses to a six-item hypoglycaemia quiz as part of the Time2DoMore survey.

Severe ‘hypos’ can make you lose consciousness (blackout) and have seizures - TRUE

‘Hypos’ can make you feel breathless - FALSE

The best thing to avoid ‘hypo’ is to eat a high calorie chocolate bar - FALSE

Some medications increase the risk of ‘hypos’ - TRUE

Alcohol consumption can increase the risk of a ‘hypo’ - TRUE

‘Hypos’ may be associated with an increased risk of heart problems - TRUE

38 DiabetesVoice September 2014 • Volume 59 • Issue 3 Health Delivery

these lifestyle changes. This represents another well- The Time2DoMore survey reveals that almost all recognised phenomenon – the misapprehension aspects of clinical inertia in diabetes can be ad- that: “the doctor is responsible for my diabetes”. The dressed by better communication. We believe that third statement addresses this component: following this simple 4-step pathway, listed in Box 3, and working in partnership with healthcare teams, There is an obligation on people with diabetes can improve their quality of every person with diabetes life and health outcomes. to accept responsibility for their disease, appropriately David Strain David Strain is Doctor at the Department of Diabetes and supported by their family, Vascular Medicine, University of Exeter Medical School, UK. caregivers and healthcare team. Acknowledgements The authors express their sincere gratitude to all the participants This does not absolve the physician or family mem- of the survey. The study was funded by Novartis. WD Strain would like to bers of their responsibility to provide the best pos- acknowledge the support of the National Institute for Health Research (NIHR) Exeter Clinical Research Facility and the sible support and treatment options, but recognises NIHR Biomedical Research Centre scheme. He reports that at the centre is a person who has ultimate con- personal fees from Boehringer Ingelheim and Pfizer, and grants and personal fees from Novo Nordisk and Novartis. trol over his or her health. The Steering Committee Even if both the person living with diabetes and Sir Michael Hirst, International Diabetes Federation Dr David Strain, University of Exeter Medical School, UK their doctor have good intentions and have formed Dr Viswanathan Mohan, Dr Mohan’s Diabetes Specialities Centre, India a partnership with shared treatment goals, it is Dr Sérgio Vencio, Catholic University of Goias, Brazil possible and often inevitable that the disease will Dr Xavier Cos, Sant Marti de Provençals Primary Care Centres, Spain progress. This brings us to our final statement to Dr Daisuke Yabe, Kansai Electric Power Hospital, Japan Dr Zoltán Vokó, Eötvös Loránd University, Hungary improve life with diabetes. Dr Matthias Blüher, Liepzig University, Germany Dr Päivi Paldánius, Novartis Pharma AG, Basel

Box 3. Living with diabetes: a 4-step pathway to improved health for the person with diabetes

1. The long-term health and wellbeing of a person with diabetes is a function of the communication between that person, their family, friends and caregivers, and the doctors, nurses and other healthcare profession- References als working with them. 1. Khunti K, Wolden ML, Thorsted BL, et al. Clinical inertia in people with type 2 diabetes: a retrospective cohort study of more than 80,000 people. 2. Every person with diabetes is different. Diabetes Care 2013; 36: 3411-7.

3. There is an obligation on every person with diabetes to 2. Strain WD, Cos X, Hirst M, et al. Time to do more: addressing clinical inertia accept the responsibility for their disease, appropriately in the management of type 2 diabetes mellitus. Diabetes Res Clin Pract 2014; supported by their family, carers and healthcare team. in press, DOI: 10.1016/j.diabres.2014.05.005

4. An inability to achieve appropriate targets set by the 3. Franks PW. Diabetes family history: a metabolic storm you should not sit out. partnership between the person with diabetes and Diabetes 2010; 59: 2732-3. their healthcare team should result in a re-evalua- tion of those targets and treatment strategy without 4. Wroblewska-Seniuk K, Wender-Ozegowska E, Szczapa J. Long-term effects of blame or recriminations from either side. diabetes during pregnancy on the offspring. Pediatr Diabetes 2009; 10: 432-40.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 39 Health Delivery Creating networks for enhanced diabetes care in Kuwait and Scotland

Abdullah Ben Nakhi and Andrew Morris

The Kuwait-Scotland eHealth Innovation Over the last three years four key programmes have Network (KSeHIN) was established in October been established to deliver these aims: 2010 following the signing of a Memorandum of ■ The Kuwait Health Network (KHN) Understanding between the five partners: Dasman ■ The post-graduate Certificate/Diploma/MSc Diabetes Institute, Ministry of Heath, Kuwait; the Diabetes Care and Education programmes University of Dundee, NHS Tayside, Scotland, UK; ■ The Kuwait Clinical Skills Centre and Aridhia Informatics Ltd. ■ Quality Improvement

The aims of KSeHIN are to address the enormous In 2012 KSeHIN was short listed for ‘International challenge of diabetes and its complications in Collaboration of the Year’ in the Times Higher Kuwait and Scotland, by delivering an integrated Education Awards. package of clinical service developments, education and research, all underpinned by state of the art The Kuwait Health Network technology. Specifically, KSeHIN aims to: KHN has been developed by Aridhia Informatics ■ Demonstrate effective and safe treatment of patients Ltd. in collaboration with clinicians in Kuwait at reduced cost through real-time integration of to provide an informatics solution that supports clinical and administrative services for disease integrated care of diabetes and its complications. management, audit and governance. This builds upon the success of Scotland which ■ Create knowledge through capacity building and has one of the best clinical information systems for training and development of staff. people with diabetes globally. The diabetes shared ■ Achieve scientific advancement through clinical care record will also include laboratory engagement with an international research results from all the major laboratory systems across community. the country. An integrated analytics module allows

40 DiabetesVoice September 2014 • Volume 59 • Issue 3 health delivery

Dasman Diabetes Institute, Kuwait

healthcare professionals to view their organisation’s ■ National paediatric diabetes registry implemented achievement of key performance indicators and (CODeR). diabetes quality outcome measures and to stratify ■ Adult diabetes registry available. patients according to risk of complications. ■ Full electronic shared clinical care record in development. The system is currently implemented in a number ■ Availability of diabetes quality outcome measures of early adopter Primary Health Centres within for all clinics in capital region. the capital region, with the capability to roll out throughout the rest of the country. This will Certificate/diploma/MSc diabetes care and provide an opportunity to accurately assess the true education prevalence of diabetes in Kuwait, provide clinical The vision of the education programme is to provide information at the point of care to enhance decision- clinical leadership, educational quality improvement making and to collect cradle to grave information and research training to Kuwaiti healthcare for people with diabetes on a nationwide scale. professionals (HCPs). The programme has been designed to allow HCPs to remain in their current Achievements to date include: jobs within Kuwait to encourage participation and ■ Connectivity to 96 Primary Health Centres, ensure that the students’ learning can be immediately Dasman Diabetes Institute and State hospitals. applied within their current practice. ■ Primary care clinical data integrated for whole country and linked with results from four The course has a modular structure allowing students laboratory information systems. to choose the topics most suited to their own

September 2014 • Volume 59 • Issue 3 DiabetesVoice 41 Health Delivery

professional developmental needs while ensuring they ■ Accreditation by the American Heart Association develop knowledge of clinical, educational, leadership for training in Life Support and First Aid. and organisational theories relevant to the multi- ■ Hosting Ministry of Health Family medicine disciplinary team approach for the management programme Objective Structured Clinical of chronic diseases. The students receive a week of Examination (OSCE) for Year 2 residents in teaching in a purpose-built facility at the Dasman October 2012. Diabetes Institute (DDI) from University of Dundee ■ Accredited as a Kuwaiti Board of Family Medicine faculty and supported by members of the DDI, local training site. HCPs and patients. The students then undertake a work-place based project on which they are assessed, Quality improvement requiring them to implement the theories, models KSeHIN has acted as the catalyst for Kuwait to and information discussed within the teaching. develop clinical standards for the treatment of diabetes. The guidelines were drawn up through Achievements to date: discussions of senior clinicians and members of ■ MSc Diabetes Care and Education launched the Ministry of Health who consulted guidelines September 2011. One hundred and eighty students from the Global Corporate Challenge (GCC), NHS enrolled in the programme in January 2014. Tayside, IDF, Scotland (Scottish Intercollegiate ■ Forty students have commenced the dissertation Guidelines Network [SIGN]), UK (National module (3rd year). Institute for Health and Care Excellence [NICE]), ■ Five hundred student work-place based projects USA (Joslin Diabetes Centre), Canada and New directly developing healthcare provision in Kuwait Zealand. The fifteen Clinical Standards for Diabetes through research, auditing, quality improvement, Care were accepted by Dr Hilal Al Sayer, Minister multi-disciplinary teams, and patient education. of Health. ■ The Annual Discovery Courses (2-3 days of workshops and keynote speakers including Conclusions Presidents of International Society for Pediatric and We are in position to build world-leading capability Adolescent Diabetes [ISPAD] and International in clinical care, education, and translational Diabetes Federation [IDF]) have attracted over medicine research in Kuwait. 550 attendees. ■ First graduation ceremony for students obtaining Our overarching aim is to scale and coordinate the Certificate of Diabetes Care and Education, programmes nationally as a transferable model September 2012. Nineteen students have now for change, to genuinely embed value within graduated. daily clinical practice and to provide evidence for improved patient care and research. The Kuwait Clinical Skills Centre The Kuwait Clinical Skills Centre at the DDI is based in the world class facility created within the School of Medicine at the University of Dundee. Abdullah Ben Nakhi and Andrew Morris Abdullah Ben Nakhi is Consultant Diabetologist and Chair of Achievements to date: Ethics Review Committee at Dasman Diabetes Institute, Kuwait. ■ Two International Gulf Clinical Skills Conference, Andrew Morris is Professor of Medicine and Dean of Medicine at University of Dundee, Scotland, UK. May 2012 and September 2013.

42 DiabetesVoice September 2014 • Volume 59 • Issue 3 health delivery Hype or hope for diabetes mobile health applications?

Joyce Lee

Mobile health applications (apps) created to help (91%) own a mobile phone, and more than half now improve type 1 diabetes or type 2 diabetes care are carry smartphones, phones with a mobile comput- perceived by their visionaries and programmers as ing platform, such as iPhone and Android.1-3 game-changing tools which assist in the rigorous demands of diabetes self-management. People Figure 1 shows that smartphone ownership is a gen- living with diabetes who have access to mobile erational thing; younger individuals have greater technology are learning how to utilise technology adoption, but use is increasing across all age groups, for better blood glucose control and support, often and most importantly differences in smartphone in conjunction with their healthcare teams. ownership are narrowing, across race and ethnicity (Figure 2) and income (Figure 3), particularly for Despite all the technological progress and success, younger generations. Because mobile phones are now diabetes health apps also raise concerns about widely available, there is great interest in the devel- important issues such as regulation and approval, opment of mobile technology for improving health. privacy, accuracy and safety. In a shortened review, Joyce Lee, Associate Professor of Pediatrics at the According to industry estimates provided by the University of Michigan and Co-Director of the U.S. Food and Drug Administration (FDA) website, Mott Mobile Technology Program for Enhancing 500 million smartphone users worldwide will be Child Health assesses the types of endocrinology using a healthcare application by 2015, and by 2018, and diabetes apps available today and examines 50% of the more than 3.4 billion smartphone and current challenges that so often come with new tablet users will have downloaded mobile health technologies. applications. These users include healthcare pro- fessionals, consumers, and patients. Mobile device growth Mobile phones have become ubiquitous. According What is mHealth? to the 2012 Pew Research Center’s Internet and Mobile health is referred to as mHealth, and is American Life Project, the majority of US adults defined as “mobile computing, medical sensor and

September 2014 • Volume 59 • Issue 3 DiabetesVoice 43 Health Delivery

communications technologies” used for health pro- There has been an explosion in mHealth over motion, including chronic disease management and the last five years, with more than 13,000 apps on wellness. mHealth includes medical applications healthcare topics alone available to Apple iPhone that may run on a cell phone, sensors that track users6 and over 6,000 medical apps available to vital signs and health activities, and cloud-based Android users.7 Apps focused on diabetes are prolif- computing systems for collecting health data.4,5 erating in the marketplace, but how many and what kind of apps are available? We recently published a Figure 1. Smartphone ownership on the review of endocrinology and diabetes applications rise across all generations to examine the types of apps available as well as review current challenges for the diabetes mobile 79% 81% application ecosystem.8 69% 55% 39% Growing number of diabetes apps When we searched for “diabetes” on January 27, 18%

Smartphone 2013, we found 600 apps on the Apple iTunes store, Ownership (%) Ownership of which 85% were relevant, and 480 apps on the 18-24 25-34 35-44 45-54 55-64 65+ Age group Android marketplace, of which 50% were relevant.

Important takeaway messages: Figure 2. Smartphone ownership nearly ■ Options vary depending on what type of phone even across race/ethnicity you have. ■  64% Our review was done in 2013 but a more recent 60% 53% search (July 3, 2014) found 969 results in the iTunes store, which demonstrates how quickly the number of available apps is accelerating. Smartphone Ownership (%) Ownership The Android search algorithm challenged our re-

White African- Hispanic view; it would only allow us to view the first 400+ American apps and the searches in Android yielded a low per- centage of relevant results. We concluded it would be Figure 3. Smartphone ownership across best to focus our review on the apps that we found income levels is narrowing through the iTunes store for use on iOS systems.

90% 81% 87% App categories 77% 72% 68% 1. Medical management of diabetes 47% 40% 43% The Welldoc Diabetes Manager, “Bluestar” is 22% 21% the only app to receive clearance from the FDA

Smartphone 8%

Ownership (%) Ownership for medical management of type 2 diabetes in 9,10 18-29 yrs 30-49 yrs 50-64 yrs 65+ yrs adults. The Welldoc system allows patients to track and record their blood glucose levels < $30k $30k - $74,999k ≥ $75k and identifies trends in blood glucose patterns

Pew Internet http://goo.gl/icleSD providing real-time, clinically based feedback

44 DiabetesVoice September 2014 • Volume 59 • Issue 3 health delivery

and coaching for people living with diabetes. 5. Social forums/blogs In addition, the app can share diabetes data di- Approximately 5% of the apps were social net- rectly with the healthcare team. Bluestar can be works, social forums, or blogs meant to connect obtained only by a prescription from your doctor. people with diabetes to each other so that they might share information and experiences. 2. Apps for tracking and displaying health information The largest proportion of diabetes apps (33%) 6. Physician directed apps was focused on health tracking. These apps al- Although most apps were developed for people lowed users to track blood glucose, insulin doses, with diabetes, approximately 8% were intended carbohydrates, weight, and physical activity and for the healthcare provider as a tool for providing review their data in a variety of ways including medical information. Other apps were designed raw numbers, graphs or summary values such as for diabetes journals which provided electronic averages. The majority of tracking apps required access to articles. the user to manually enter their health data into the app. Just a few apps could directly upload Current challenges in the mHealth app landscape glucose levels to a mobile phone, such as the 1. The majority of mHealth diabetes apps have not Glooko system, the iBGStar meter, or the Telcare been tested or evaluated for improving health meter. mySugr is a diary and monitoring app outcomes. that leverages gamification style to keep users engaged and motivated. Each of these apps has 2. Most diabetes apps were consumer facing, and been given FDA approval.11 although users could elect to send health in- formation to their provider, they could only 3. Apps for teaching and/or training share the information using methods of com- Approximately 22% of apps were focused on munication like email that are not compliant teaching and/or training. For example, some apps with the US Health Insurance Portability and taught the principles of carbohydrate counting Accountability Act (HIPAA). The purpose of through interactive graphics and games. Other HIPAA is to prevent inappropriate use and dis- apps were insulin dose calculators that provided closure of individual health information. In ad- a suggested dose of insulin based on a target dition, there was no way for the data from the blood glucose value, correction factor, carbohy- apps to be integrated into the health provider drate ratio, current blood glucose and estimated electronic medical record. carbohydrate before a given meal. Tracking apps also provided training for users in medication 3. There are potential safety concerns. The FDA administration such as glucagon or assistance defines an app as a medically regulated device with device use. if it provides a patient-specific result, diagnosis, or treatment recommendation that is used for 4. Food reference databases making clinical decisions.11 We found a number Approximately 8% of the apps were food reference of insulin dose calculator apps which technically databases for carbohydrate counting. Another meet criteria for being a medically regulated 5% had recipes for users with diabetes. Some mobile application, but did not find evidence apps combined carbohydrate counting guides for FDA approval despite their availability to with tracking tools. consumers.12,13

September 2014 • Volume 59 • Issue 3 DiabetesVoice 45 Health Delivery

4. In both the iPhone and Android stores, many about the safety and medical utility of mobile health of the diabetes apps were categorised as “medi- applications. There’s a little bit of hype right now, cal” in their descriptions, but this designation but my bet is on the hope. was provided by the app maker, and not by any particular review body or medical expert. Individuals may be unaware of this distinction and may incorrectly assume that the “medical” Joyce Lee Joyce Lee is Paediatric Endocrinologist and Associate Professor of label implies an endorsement for medical ef- Pediatrics at the University of Michigan and Co-Director of the fectiveness. Mott Mobile Technology Program for Enhancing Child Health. She encourages people to follow her on Twitter twitter.com/joyclee, to follow her blog tinyletter.com/joyclee and would love for you to 5. There are possible threats to privacy and secu- join the health + design community here: healthdesigncupid.us.

rity of information transmitted through mobile References 14 apps. There is growing concern about the pri- 1. Fox S, Duggan M. Mobile Health 2012. Pew Internet and American Life Project. vacy of data entered into mHealth apps, what Washington, D.C., 2012.

companies actually do with the data, and whether 2. Lenhart A. Teens, Smartphones and Texting. Pew Internet and American Life they notify users of how they use the data. Project. Washington, D.C., 2012.

3. Nielsen. Young adults and teens lead growth among smartphone owners. www.nielsen.com/us/en/insights/news/2012/young-adults-and-teens-lead- 6. There are difficulties with finding relevant apps. growth-among-smartphone-owners.html Again, given the different results we found with 4. Estrin D, Sim I. Open mHealth architecture: an engine for health care the iPhone and Android searches, an individuals’ innovation. Science 2010; 330: 759. access to diabetes apps was wholly dependent 5. Milošević M, Shrove MT, Jovanov E. Applications of smartphones for ubiquitous on whether they had an Android phone or an health monitoring and wellbeing management. JITA 2011; 1: 7-15. iPhone. The search capabilities for both app 6. Dolan B. An Analysis of Consumer Health Apps for Apple’s iPhone 2012. stores were relatively rudimentary, without the Mobihealthnews. 2012. ability to perform more advanced searches. Apps 7. AppBrain. Most Popular Android Market Categories. did carry user reviews, which were few in volume www.appbrain.com/stats/android-market-app-categories and with uncertain reliability. Finally, app search 8. Eng DS, Lee JM. The promise and peril of mobile health applications for diabetes algorithms are not transparent and it has been and endocrinology. Pediatric Diabetes 2013; 14: 231-8. doi: 10.1111/pedi.12034 speculated that the iPhone app store is continu- 9. iHealthBeat. 44M Mobile Health Apps Will Be Downloaded in 2012, ally changing the search algorithms which could Report Predicts. www.ihealthbeat.org/articles/2011/12/1/44m-mobile- affect patient access and choice depending on health-apps-will-be-downloaded-in-2012-report-predicts

when they access the app store. 10. Dolan B. FDA Clears WellDoc for Diabetes Management. Mobihealthnews. http://mobihealthnews.com/8539/fda-clears-welldoc-for-diabetes-management

Regardless of these challenges, mHealth has great 11. Mobile Medical Applications. http://www.fda.gov/MedicalDevices/ potential for improving outcomes in diabetes, com- ProductsandMedicalProcedures/ConnectedHealth/MobileMedicalApplications/ default.htm?utm_source=twitterfeed&utm_medium=twitter) munication between patients and providers, and increasing the efficiency of care delivery in health 12. Dolan B. Analysis: 75 FDA-Cleared Mobile Medical Apps. http:// mobihealthnews.com/19638/analysis-75-fda-cleared-mobile-medical-apps/ systems. However, further work is needed to: (1) prove the effectiveness of these apps; (2) integrate 13. U.S. Food and Drug Administration. 510(k) Premarket Notification Database. www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpmn/pmn.cfm the use of apps with healthcare providers into the healthcare delivery system; and (3) provide con- 14. Federal Trade Commission. FTC Staff Report Recommends Ways to Improve Mobile Privacy Disclosures. USA, 2013. sumers with systematic and reliable information

46 DiabetesVoice September 2014 • Volume 59 • Issue 3 clinical care Debate: Self-monitoring of blood glucose by people with type 2 diabetes

To what extent, if at all, should blood glucose self-monitoring be recommended for people with type 2 diabetes not treated with insulin? We have asked two experts to comment.

The argument against

Jeffrey W Stephens

“If you cannot measure it, you cannot improve it” “If you’ve measured it, you must do something about it” Lord Kelvin 1824-1907

The self-monitoring of blood glucose (SMBG) lifestyle. However, evidence on the effectiveness is generally accepted as integral to the manage- of SMBG for non-insulin treated type 2 diabetes ment of diabetes, particularly for people who is unclear. A series of systematic reviews and require insulin. This allows the patient to detect meta-analyses provides inconclusive results in hyperglycaemia or hypoglycaemia; helps inform relation to glycaemic control and furthermore decisions about adjustment of insulin dosage; it is also unclear whether particular groups may and may suggest a change in some aspect of benefit from a period of self-monitoring.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 47 clinical care

In UK practice, the National Institute of Clinical with diabetes and GBP 38 million for patients Excellent (NICE) recommends that SMBG be of- with type 2 diabetes. The costs of unsubsidised fered to a person newly diagnosed with type 2 dia- test strips vary from $0.35 in Australia to $3.11 betes only as an integral part of self-management in India. In the DiGEM (Diabetes Glycaemic education (NICE Clinical Guideline 87; May 2009, Education and Monitoring) trial, there was a accessed 3rd June 2014). NICE also recommends that full economic evaluation of SMBG. Costs for the SMBG be made available to those on insulin; on oral intervention were GBP 89 for standardized usual medication to provide information on hypoglycae- care, GBP 181 for less intensive SMBG (2 days, mia; to assess changes associated with medication 3 tests daily) and GBP 173 for more intensive or lifestyle or illness; and to ensure safety during SMBG. Of interest, there were higher losses to activities, including driving. This should be assessed follow-up in the more intensive SMBG group at least annually in a structured manner including which could incur additional long-term costs. the use of self-monitoring skills, quality and ap- propriate frequency of testing, and the continued Evidence for and against SMBG benefit should be assessed. The American Diabetes The evidence supporting SMBG in type 2 diabe- Association recommends SMBG ≥6 per day for tes is unclear. Table 1 summarises the results of people on multiple-dose insulin (MDI) or insulin randomised clinical trials. As shown, the evidence pump therapy but is unclear about type 2 diabetes supporting improved overall glucose control is and with no specific frequency recommended.1 unclear. More recently a meta-analysis by Farmer and colleagues2 concluded that the clinical man- The pros and cons of SMBG agement of non-insulin treated diabetes using The advantages and disadvantages of SMBG SMBG compared with no SMBG results in a

are shown in Figure 1. It should be noted that HbA1c reduction of 0.25% with a mean pooled

the financial cost of SMBG is considerable. In HbA1c levels across the groups of 0.88% in the the UK during 2008, the costs of SMBG were SMBG v 0.69% in the no SMBG. Of interest, no

estimated to be GBP 120 million for all patients change in HbA1c level was observed for older and

Figure 1. Pros and cons of SMBG in type 2 diabetes

Well motivated Understanding Ability Education Staff

Real time blood glucose values Stressful & intrusive Understand effects of exercice, food & meds Discomfort Empower and motivate May be inaccurate/not understood Provide reassurance on glucose levels Cost

PROS CONS

48 DiabetesVoice September 2014 • Volume 59 • Issue 3 clinical care

Table 1: Randomised controlled trials examining HBA1c reduction with SMBG (details of the references for these are given in reference 3) Study For Against ↓ SMBG Study Group (Schwedes et al, 2002) HbA1c (1.0% v 0.54%) X ↓ depression (6 months) ↓ King-Drew MC trial (Davidson et al, 2005) X HbA1c NS ↓ ESMON study (O’Kane et al, 2008) X HbA1c NS 6% ↑ depression (6 months) ↓ DiGEM (Farmer et al, 2007) X (But HbA1c: 8.6 to 6.9% in controls) HbA1c NS (12 months) ↓ ↓ DINAMIC-1 study (Barnett et al, 2008) HbA1c, Hypos (27 weeks) X

(HbA1c: 8.1 to 7.2% in controls/ 7.0% intervention) NS : non-significant

younger people and those with a level >10%. In a Table 2: International Diabetes Federation Cochrane literature review by Melanda and col- consensus on SMBG in Non-Insulin 3 Treated Type 2 Diabetes (IDF 2009) leagues, the reduction in HbA1c associated with SMBG was 0.26%. Furthermore, studies have SMBG should only be used: shown no difference in treatment satisfaction, a With knowledge/skills/willingness to incorporate into decrease in well being associated with SMBG and behavioural and therapy change demonstrated by per- son with diabetes, carer/ HCP to attain agreed targets a 6% increase in depression score. At diagnosis as part of education to facilitate timely treatment initiation and optimisation There is evidence supporting the use of struc- Part of on-going education and self-management tured SMBG. A US study in 483 poorly con- Protocols should be individualised

trolled insulin-naïve type 2 patients (mean HbA1c Purpose agreed between individual and carer/health 8.9%) compared a comprehensive, structured care professional SMBG intervention to usual care. The result was Monitor performance and accuracy of their glucose meter

a greater reductions in mean HbA1c at 12 months with structured SMBG v usual care (1.2% vs. education programme. Evidence suggests that 4 0.9%, P=0.04). However, it is unclear whether SMBG fails to reach a reduction of 0.5% HbA1c

0.3% difference in HbA1c is clinically significant (which is accepted to be of clinical relevance) and and enough to justify the additional resources the costs of self-monitoring remain high. Therefore, needed to provide the intervention. This sup- current evidence does not support the routine use ports the International Diabetes Federation’s view of SMBG for people with non-insulin treated type (Table 2) that SMBG should be part of an ongo- 2 diabetes except in educated and motivated pa- ing supported structured education programme. tients at risk of hypoglycaemia during inter-current illness, fasting or when using sulphonylureas. As Conclusion observed by Blonde et al in a recent Diabetes Care In conclusion, for patients with established well publication: “…it is not the collection of blood controlled type 2 diabetes receiving oral medica- glucose data but rather the effective use of blood tion who monitor blood glucose infrequently, little glucose information for making clinical decisions is to be gained in promoting SMBG, even with an that leads to improvement in diabetes control.”

September 2014 • Volume 59 • Issue 3 DiabetesVoice 49 clinical care

Self-monitoring of blood glucose needs to be an integral part of the care package for people with type 2 diabetes

Kerstin Kempf, Lutz Heinemann and Stephan Martin

The ongoing discussion about the benefit of effects on blood glucose concentration of diet, self-monitoring of blood glucose (SMBG) in the physical activity or medication. Therefore, SMBG therapy of patients with type 2 diabetes not treated should be an integral opportunity for all patients with insulin is in a sense a part of the discussion with diabetes, especially for newly diagnosed and about lifestyle intervention or early pharmaceuti- overweight patients, who are willing to change cal therapy in type 2 diabetes. There are no official their lifestyle and to lose weight. SMBG is only claims against therapy intensification for type 2 useful if the results lead to therapeutic or be- diabetes patients with poor metabolic control havioural changes. It should only be used when although it might be questionable if high doses patients and their healthcare providers have the of insulin or combinations of oral anti-diabetic knowledge, skills, and cooperativeness to inte- drugs really might be useful if patients still on a grate SMBG and SMBG-based adjustments into “diet and exercise regime” remain overweight and therapy. Thus, early investigations did not find badly controlled. By going the “pharmaceutical beneficial effects because at that time SMBG had way” patients may hand over responsibility to just been added to standard care without struc- their healthcare professionals and stay passive and tured SMBG protocols or SMBG-based therapy undedicated. Such behaviour seldom results in a adjustment algorithms.5 When education mod- more active lifestyle, weight loss, and improved ules for patients and care providers concerning glucometabolic control. Rather, it forces a vicious the interpretation of SMBG data and decision cycle of weight gain and the intensification of making ere included, these skills helped not only pharmaceutical treatment. patients to understand the relationship between their diet and physical activity and blood glucose In contrast, lifestyle modification offers the pos- values (Figure 2) but also the physician to adapt sibility to patients to become an active partner treatment.6 Meta-analyses of subsequent studies in their diabetes therapy and SMBG is the only suggested that structured SMBG was associated 7 credible possibility for monitoring immediate with significant HbA1c reductions of 0.2-0.4%.

50 DiabetesVoice September 2014 • Volume 59 • Issue 3 clinical care

Figure 2. Self-monitoring of blood glucose international diabetes guidelines. Also patients during 12 weeks of lifestyle intervention as well as care providers should be educated as to how to perform, interpret and react on meas- 300 Baseline ured values. Then, for interested and dedicated Week 4 250 Week 8 patients, SMBG could be a very helpful diagnostic Week 12 tool for self-monitoring of diabetes control and 200 lifestyle management.

150

lood glucose (mg/dl) glucose B lood 100 Jeffrey Stephens, Kerstin Kempf, Lutz Heinemann 50 and Stephan Martin Jeffrey Stephens is Clinical Professor of Diabetes at Swansea University, UK and Consultant in Diabetes and Endocrinology fasting at Morriston Hospital, Abertawe Bro Morgannwg Health Board, South Wales, UK. before lunch before dinner before bedtime Kerstin Kempf is Scientific Project Manager and Leader of the 1.5-2h after lunch1.5-2h after dinner study centre of the West-German Centre of Diabetes and Health, 1.5-2h after breakfast Düsseldorf Catholic Hospital Group, Düsseldorf, Germany. Lutz Heinemann is Partner and Scientific Consultant of the Profil Shown are four 7-point diurnal blood glucose profiles of a 51 year Institut für Stoffwechselforschung GmbH, Neuss, Germany and old white male, who lost 8 kg of weight during a SMBG-structured Profil Institute for Clinical Research Ltd, San Diego, USA. 12-week lifestyle intervention.6 Stephan Martin is Director of the study centre of the West-German Centre of Diabetes and Health, Düsseldorf Catholic Hospital Group, Düsseldorf, Germany.

References Economic discussion considers the costs for saved 1. American Diabetes Association. Standards of medical care in Diabetes - 2014. medication versus the costs for SMBG. Much of Diabetes Care 2014; 37: S14-S80 2. Farmer AJ, Perera R, Ward A, et al. Meta-analysis of individual patient the published evidence does not take into account data in randomised trials of self monitoring of blood glucose in people the longer term risks of diabetic complications. with non-insulin treated type 2 diabetes. BMJ 2012; 344: e486. 3. Malanda UL, Welschen LM, Riphagen II, et al. Self-monitoring of However, when these factors were taken into blood glucose in patients with type 2 diabetes mellitus who are not account, real-time SMBG was associated with a using insulin. Cochrane Database Syst Rev 2012; 1: CD005060. 4. Polonsky WH, Fisher L, Schikman CH, et al. Structured self-monitoring reduced incidence of cardiovascular events and of blood glucose significantly reduces A1c levels in poorly controlled, mortality as shown by the retrospective observa- noninsulin-treated type 2 diabetes: results from the Structured Testing Program study. Diabetes Care 2011; 34: 262-7. tional ROSSO study.8 Economic analyses suggest- 5. Kolb H, Kempf K, Martin S, et al. On what evidence-base do we recommend ed that the additional costs for SMBG are worth- self-monitoring of blood glucose? Diabetes Res Clin Pract 2010; 87: 150-6. while because of reduced costs of complications 6. Kempf K, Tankova T, Martin S. ROSSO-in-praxi-international: long-term effects of self-monitoring of blood glucose on glucometabolic control in 9 together with increased quality of life. Further patients with type 2 diabetes mellitus not treated with insulin. gains with regard to diabetes self-management Diabetes Technol Ther 2013; 15: 89-96. 7. Farmer AJ, Perera R, Ward A, et al. Meta-analysis of individual patient and patient empowerment have yet to be assessed. data in randomised trials of self monitoring of blood glucose in people with non-insulin treated type 2 diabetes. BMJ 2012; 344: e486. 8. Martin S, Schneider B, Heinemann L, et al. Self-monitoring of blood glucose In summary, SMBG should not be performed in type 2 diabetes and long-term outcome: an epidemiological cohort study. according to the principle of “the more, the mer- Diabetologia 2006; 49: 271-8. 9. Tunis SL, Minshall ME. Self-monitoring of blood glucose (SMBG) for type 2 rier” but the optimum structure of SMBG (viz. diabetes patients treated with oral anti-diabetes drugs and with a recent frequency, timing and intensity in special situ- history of monitoring: cost-effectiveness in the US. Curr Med Res Opin 2010; 26: 151-62. ations) should be integrated into national and

September 2014 • Volume 59 • Issue 3 DiabetesVoice 51 clinical care Surviving diabetes in Northern India

The first time Dr Santosh Gupta visited a In an effort to help, she and her husband Dr rural hospital in Northern India she was J.K. Gupta founded the Manav Seva Foun- shocked to learn that none of the children dation (MSF) in 2005. MSF has helped saved with type 1 diabetes survived the disease the lives of children with type 1 diabetes to adulthood and that people with type 2 in Northern India giving them a chance for diabetes endured inadequate care result- normal growth and development. Today, ing in life-altering complications. the non-profit also provides training and

52 DiabetesVoice September 2014 • Volume 59 • Issue 3 clinical care Surviving diabetes in Northern India

education for healthcare teams helping to how success is measured in this part of ensure people living with diabetes have a the developing world. As a reflection of better future. survival in the region, we have included an essay written by a recent MSF healthcare In her own words, Dr Gupta discusses graduate entitled, “Jitendra’s Story.” MSF’s commitment to people living with diabetes and helps us better understand

September 2014 • Volume 59 • Issue 3 DiabetesVoice 53 clinical care Without diabetes education, lives are lost

Santosh Gupta

The growing worldwide epidemic of diabetes has health and well-being. MSF teamed up with local the potential for devastating impact upon develop- non-profit hospitals in Haridwar and Vrindaban, ing countries. Four out of five people with diabetes India to provide care for under-served diabetes live in low- and middle-income countries and and heart disease patients. These hospitals provide diabetes disproportionally affects the socially dis- multi-disciplinary low cost or free medical care to advantaged. Due to the unavailability of affordable large impoverished populations and are financed treatment, low-income populations suffer most. by donations.

On one of my earliest visits to the Ramakrishna When we began our work, significant challenges Mission (RKM) Hospital in Haridwar, India I was existed as many essential resources were lacking and shocked that not one child with type l diabetes was there were multiple challenges, including cultural able to survive to adulthood. People with type 2 barriers. The hospital staff had difficulty believing diabetes did not fare much better; they were poorly that children and their families could understand controlled and suffered devastating complications and accept insulin therapy and many locals believe that diminished both the quality and length of their that insulin is an “addictive” drug. Without education life. Later I learned that this situation is prevalent and support, many families who had been willing to nationwide in India with very few exceptions. try insulin therapy lost their sons and daughters to severe hypoglycaemia. People began to think that It was for this very reason that my husband, Dr J.K. all insulin was good for was early death. Gupta, a Cardiologist at Washington University in St. Louis, Missouri and I founded the Manav MSF overcame many cultural barriers by providing Seva Foundation (MSF) in 2005. We created the linguistically and culturally appropriate diabetes non-profit organisation as a means to help mar- education. Our teams were successful at helping ginalised populations of Northern India suffering people understand the rigors associated with in- from diabetes and cardiovascular complications. sulin therapy. Instead of being fearful of insulin MSF’s mission is to empower local populations shots, local people living with diabetes realised that to take control of the decisions that affect their insulin gave them a chance to lead a normal life.

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From left to right: Jitendra’s mother, Professor Gupta, Jitendra and Jitendra’s Diabetes Educator Stuti in Vrindavan, Uttar Pradesh, India.

We also developed carbohydrate measurements for diabetes educators graduated in 2014. Jitendra’s Indian food and wrote a handbook on living with story is written by one of our newly graduated diabetes, which was translated into local dialects. certified diabetes educators. Currently we have over 100 patients on multiple

daily injections (MDI) and HbA1c results are be- Drs Jitendra K. Gupta and Santosh Gupta have tween 7.5% and 8.5% without significant hypogly- been associated with Washington University School caemia. Children with diabetes have a chance for of Medicine in St. Louis, Missouri (USA) since normal growth, development and a future. 1969. They retired from their private practice at the end of 2007. In 2013, MSF initiated a certified diabetes edu- cator programme at the Nursing School of RKM For more information about the Manav Seva Hospital in Vrindaban, enrolling interested gradu- Foundation: www.manavseva.org ate nurses. The curriculum is based on princi- pals of the American Association of Diabetes Educators (AADE) and International Diabetes Federation’s (IDF) guidelines. Our first batch of

September 2014 • Volume 59 • Issue 3 DiabetesVoice 55 clinical care Learning to stand strong with type 1 diabetes

Stuti Srivastava

Jitendra is a 15-year-old boy who comes from awful time. I could not even stand up on my own rural Uttar Pradesh, India. At the age of 12, he feet. My entire family thought I was surely going was admitted to a nearby medical school hospital. to die. We finally got a little hope, however, when He had difficulty breathing and was lapsing into we heard about Ramakrishna Mission Sevashrama a comatose state. At the hospital, he was diag- Hospital in Vrindaban.” nosed with diabetic ketoacidosis (DKA) for which he received treatment. Jitendra had developed The doctors communicated type 1 diabetes. to the family that Jitendra would never again be able Jitendra and his family did not to stand on his right leg. understand how to administer insulin so they did not use it. One month later, Jitendra was admitted again to the same hospital with DKA. During this time, he had After four days in hospital he was sent home with an infection in his right index finger which later a regimen of twice-daily premixed insulin to be spread to his right hip joint. This caused necrosis administered by a local doctor. He was also told that and Jitendra could not walk. The family suffered he should not eat anything that had sugar, includ- terribly for more than two years before they finally ing fruit and milk. Neither he nor his parents were reached Ramakrishna Mission (RKM) Hospital in given any education about diabetes, the importance Vrindaban. On September 13, 2013, Jitendra was of insulin, or how to manage his diet. Jitendra and evaluated by both a physician in charge and an his family did not understand how to administer orthopedic surgeon. For the first time an informed insulin so they did not use it. Jitendra says, “I will doctor explained to Jitendra and his parents how never forget the day I was admitted to Aligarh a minor finger infection could spread to his hip Medical College and Hospital. My father had to sell joint. The family was told that Jitendra’s poorly every single thing we owned in order to pay for my controlled diabetes was the reason behind the treatment. I feel so afraid just remembering that necrosis. The doctors also communicated to the

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family that Jitendra would never again be able to stand on his right leg because the head of his femur bone was totally destroyed.

Jitendra received support and diabetes education at RKM Hospital, which he remembers to this day, “A diabetes nurse educator worked with me and my family everyday and spent a lot of time teaching us how to give injections and use a home glucometer to test my blood glucose. She also told me that if I am the one who does my own injections and blood glucose testing it might hurt less. It's true! I never thought I could do my own injections, but I can and it is amazing. Probably the most wonderful thing was when I learned that I could eat almost anything considered healthy, and sweets on special Professor Gupta with Jitendra (on right) and occasions as long as I take a proper dose of insulin. another boy with type 1 diabetes. I was ecstatic! At first it was really hard to imagine giving myself four injections each day, but I felt okay about it when the nurse educator explained that the pancreas of a 'normal' person automatically releases Today Jitendra can walk with the help of a stick. He insulin into the system every time a person eats does not leave home without his hypoglycaemia food. I realised that I just needed insulin from the pack in his pocket (full of sugar to treat a low blood outside. This made me feel good and more normal, glucose) and he always carries his diabetes identity and actually free for the first time in my life.” card with him. Jitendra is no longer ashamed and embarrassed about his diabetes, but instead talks I realised that I just needed about his condition freely and with strong personal insulin from the outside. This confidence. He has returned to school after many made me feel good and more missed years and is now in the fifth grade. normal, and actually free for the first time in my life. Because Jitendra’s family are illiterate, the staff at RKM faced some daunting obstacles as they began Santosh Gupta and Stuti Srivastava Santosh Gupta is Pediatric Endocrinologist, Washington University the education process. First, they decided to start at St Louis, USA. educating Jitendra. He then taught his own family Stuti Srivastava is Diabetes Health Educator at the RKM Hospital in Vrindaban, India. under supervision. This reinforced Jitendra's learn- ing and increased his confidence; he was so proud Acknowledgements The diabetes programme at Ramakrishna Mission Hospital is led of himself. He is fully able to count carbohydrates by Dr Santosh Gupta M.D, Pediatric Endocrinologist, Washington and use all the tools necessary to manage his own University at St Louis, USA. Support, including insulin, came from IDF’s Life for a Child diabetes. As a result his HbA1c has come down to Programme and Insulin for Life, USA. 6.1% after three months of treatment.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 57 clinical care Can we get it right for youth with type 2 diabetes?

William V. Tamborlane, Katrina Ruedy, Michelle Van Name and Georgeanna J. Klingensmith

The prevalence and magnitude of childhood obe- metformin remains the only other antidiabetic sity are increasing dramatically. Until two decades medication that is approved by the U.S. Food and ago, symptomatic children and adolescents were Drug Administration (FDA) and the European automatically diagnosed with type 1 diabetes. In Medicines Agency (EMA) for use in youth with the 1990s, type 2 diabetes in children and adoles- type 2 diabetes.2 cents emerged in association with the epidemic of childhood obesity, disproportionally affecting Metformin has long been recognised as the pre- disadvantaged minority children. Between 1995 ferred first line treatment for paediatric type 2 and 2007, the annual incidence of type 2 diabetes in diabetes, and it is the only drug for which efficacy children younger than 15 years increased five-fold.1 and safety have been established in a completed Tragically, type 2 diabetes in children is associated randomised clinical trial in children and adoles- with comorbidities that increase the risk of future cents with type 2 diabetes.3 However, the results cardiovascular disease. of the TODAY study suggest that type 2 diabe- tes in youth may have a more aggressive course After more than 20 years, the optimal approach than in adults, since adequate glycaemic control to the treatment of childhood type 2 diabe- could be maintained on metformin monotherapy tes remains largely unknown. Besides insulin, in only ~50% of subjects during the trial.4 Insulin

58 DiabetesVoice September 2014 • Volume 59 • Issue 3 clinical care

September 2014 • Volume 59 • Issue 3 DiabetesVoice 59 clinical care

is the other class of drugs that is approved for use few patients. According to www.clinicaltrials.gov, in youth with type 2 diabetes but this approval there are approximately eighteen paediatric trials was based on extrapolation of efficacy and safety with ten different agents for type 2 diabetes and from studies in youth with type 1 and adults with recruitment for these studies has been ongoing type 2 diabetes. Even more importantly, baseline for as long as seven years. While these studies data from the Pediatric Diabetes Consortium would require at least 3800 subjects to complete, (PDC) T2D Clinic Registry indicate glycaemic it is estimated that there are only 25-35,000 youth control remains poor in patients with metformin with type 2 diabetes in the US and far fewer in treatment failure, despite the addition of insulin.5 Europe. As illustrated by recent data from the 500 The limited treatment options available to clini- youth with type 2 diabetes enrolled in the PDC cians treating adolescents with type 2 diabetes are T2D Registry5 the large majority of youth with in stark contrast to the plethora of new treatment type 2 diabetes are obese, minority girls from low- modalities that are available for adults with the income families. Difficulties in recruiting these same disease. youngsters are compounded by the frequency of depression and other psychiatric problems in The main reasons why virtually all of the cur- this population. rent randomised clinical trials of new drugs for the treatment of youth with type 2 diabetes are Additionally, eligibility criteria mandated by regu- failing are that there are too many trials for too latory authorities have made recruitment of an adequate number of subjects for these randomised trials virtually impossible. As will be illustrated by the two examples below, inclusion and exclusion criteria required by the FDA and EMA simply Figure. An example of a multi-agent study have not reflected the clinical characteristics of the similar to design in the TODAY study. relatively small pool of patients who are available for participation in these studies.

Early Combination Therapy Trial in Well Controlled Youth with Type 2 Diabetes on Metformin alone Trials of experimental drugs versus metformin as initial monotherapy of type 2 diabetes In these early paediatric type 2 diabetes trials, Metformin run-in Titrate metformin to 1000 (min) - 2000 (goal) mg/day subjects were eligible only if they were drug naïve

and had an HbA1c >7.0%. In the PDC cohort, only 4.8% were both drug naïve and had an elevated

HbA1c < 7.5% at final run-in visit 5 HbA1c level.

Randomization to: Trials of experimental drugs as add-on therapy in metformin failures

To be eligible for these studies, HbA1c had to be Metformin Met+ Met+GLP-1 Met+ >7.0% on treatment with metformin alone. While alone DPP-4 i agonist SGLT2 i 35% of the PDC cohort was treated with metformin alone at enrolment, only 8% of the total cohort

had an elevated HbA1c level while on metformin

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monotherapy; 50% of the cohort was excluded William V. Tamborlane Katrina Ruedy, Michelle Van Name 5 because of use of insulin. and Georgeanna J. Klingensmith William V. Tamborlane is Professor and Chief of Pediatric Endocrinology at Department of Pediatrics, Yale University School of Other obstacles to enrolment include the exclusion Medicine, New Haven, Connecticut, USA. [email protected] of subjects 18 to 25 years of age even though few Katrina Ruedy is Assistant Director of JAEB Center for Health Research, Tampa, Florida, USA. of these emerging young adults have been enrolled Michelle Van Name is Doctor at Department of Pediatrics, Division of in adult type 2 diabetes trials. Each individual trial Pediatric Endocrinology, Yale University School of Medicine, New Haven, Connecticut, USA. requires a separate control group, and the EMA Georgeanna J. Klingensmith is Professor of Pediatrics, University of requires 30% of subjects be European despite the Colorado, the Barbara Davis Center and the Children's Hospital Colorado, Aurora, Colorado, USA. very small number of youth with type 2 diabetes in Europe. Any and all restrictions on inclusion/ Duality of interest William V. Tamborlane: Bristol Myers Squibb, Boehringer Ingelheim, exclusion criteria unless absolutely needed for Janssen, Novo Nordisk, Sanofi, Takeda, VeroScience specific safety purposes only serve to encumber Georgeanna J. Klingensmith: Novo Nordisk already difficult recruitment, and potentially can have a negative impact on clinical trial retention of this typically difficult to engage population.

An obvious conclusion from the above is that met- formin and insulin are likely to remain the only drugs approved for youth with type 2 diabetes in the foreseeable future in the absence of broader eligibil- ity criteria and new study designs. New inclusion criteria would increase the pool of subjects by: ■ Increasing the age of eligibility to 25 years. ■ Making insulin-treated subjects eligible. ■ Implementing early combination therapy trials (like the TODAY study) in patients who are well- controlled on metformin alone.

In addition, the number of subjects required for References these trials could be substantially decreased by use 1. Dabelea D, Bell RA, D'Agostino RB, et al. Incidence of diabetes in youth of a multi-agent design where each experimental in the United States. JAMA 2007; 297: 2716-24. arm would be compared to a single control group. 2. Tamborlane WV, Klingensmith G. Crisis in care: limited treatment options for One example of a possible study that includes type 2 diabetes in adolescents and youth. Diabetes Care 2013; 36: 1777-8. many of these components is shown in the Figure. 3. Jones KL, Arslanian S, Peterokova VA, et al. Effect of metformin in pediatric Ideally, these multi-agent studies would feature patients with type 2 diabetes: a randomized controlled trial. Diabetes Care 2002; collaboration between academic medical centre 25: 89-94.

investigators, industry sponsors and regulatory 4. TODAY Study Group. A clinical trial to maintain glycemic control in youth agencies. National and international consortia of with type 2 diabetes. N Engl J Med 2012; 366: 2247-56.

paediatric diabetes centres are also needed to pro- 5. Tamborlane W, Willi S, Bacha F, et al. Why trials of drugs in pediatric type 2 vide the infrastructure to carry out future clinical diabetes are failing. Presented at the American Diabetes Association meeting. San Francisco, 2014. trials in paediatric type 2 diabetes.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 61 Diabetes in society Diabetes voices: What I wish my doctor had told me when I was diagnosed…

Do you remember the day you were diagnosed Diabetes Voice reached out to five people and what you felt when the doctor told you living with type 1 diabetes, type 2 diabetes why you were unwell? and latent autoimmune diabetes in adults (LADA) and asked them to consider the day “You have developed a condition called of their diabetes diagnosis and if relevant diabetes.” discuss, “What I wish my doctor had told me when I was diagnosed...” Many people feel a great loss at that moment perceiving that diabetes is incurable and The result is often shocking, revealing how requires intense therapy and management. the battle with diabetes often begins that Many, if not most people may not know much day in the consultation room. A person’s first about diabetes and will require a great deal exchange and subsequent early consultations of Diabetes Self-Management Education often impact what occurs in the following (DSME) and Diabetes Self-Management days, months and even years. Support (DSMS) in order to move ahead with confidence.

September 2014 • Volume 59 • Issue 3 Diabetes in society

A person with type 2 diabetes

“Sometime in the early 1980s my blood work had indicated ‘diabetes mellitus’, but my physician never said a word. Then, in 1984, a lab test indicated that my blood glucose was in excess of 200 mg/dl [11.1 mmol/l]. My new physician announced that I had diabetes and would need insulin for the rest of my life! He demonstrated how I was to inject myself in my thighs, arms, or stomach with an orange. I left his office with insulin, syringes, and an orange, but no knowledge of diabetes.

Blood glucose testing occurred three times a week at my hospital-based physician’s office. Diabetes was never discussed beyond the amount of insulin I needed to inject. I never mentioned my diabetes to anyone and my life of twelve-hour workdays went back into gear. I frequently skipped insulin as well as breakfast and lunch. Various medical professionals’ interest in my health status was limited to the question, ‘How’s your diabetes?’ I responded by saying that I didn’t ‘need’ insulin and even ‘I don’t have diabetes.’

The real beginning of my education about diabetes care came when I had quadruple by-pass surgery in 2000. I learned the importance of diet, exercise, daily multiple testing of blood glucose, and daily adjustment of insulin.

With all the public information about the negative impact that diabetes has on the body’s system, how I could have ignored most of managing diabetes until my heart attack? For me, the answer dates back to 1984. A doctor I liked and trusted told me very little about diabetes.

Today, I live with multiple complications. My current experience with six different physicians has taught me that the management of my diabetes rests with me. Currently, I inject a bolus insulin five times a day to cover my meals and a basal insulin once daily. In addition, I take fifteen oral prescription medica- tions. Ironically, my primary educators about my disease have been other people with diabetes and the media, not my physicians.”

John Morrison, age 73 years, Connecticut, USA

September 2014 • Volume 59 • Issue 3 DiabetesVoice 63 Diabetes in society

A person with type 1 diabetes

“When I was diagnosed with type 1 diabetes in an emergency hospital room in 1976 at age 12, the diagnostic test showed my blood glucose at around 1500 mg/dl. For no ap- parent reason, I had collapsed at school. I was 5’5” tall, but I weighed about 60 lbs. I was weak, and on the brink of DKA coma but still alert. After my parents and I were told I had developed type 1 diabetes, the attending doctor took over from the nurse to wheel me to ICU. As he was pushing me through the halls, he told me I would die early if I didn’t take my insulin shots but regardless I would likely suffer blindness and probably amputation. He wheeled me right up to a window of the hospital outpatient diabetic clinic so I could see the victims of diabetes first-hand. I was so unwell I could hardly keep my head up but he forced me to look into the eyes of the man sitting in a wheelchair without one leg and then directed me to gaze at a young woman with bandages on her eyes. On the way to the nurses’ station he informed me I would not be able to have any children and would be lucky if I lived past 35. He also shared a polite version of his insights with my parents the next day.

Kids can be intuitive. Even in my weak state, I knew that my experience was odd. Something told me that this thing called diabetes made people crazy.

Determined to overcome this dark future with diabetes, I made a personal vow (as I lay alone in the hospital room on that very night) to beat this disease I knew so little about. While many people living with diabetes today are tough and have learned how to man- age the ups and downs, the emotional toll can be immense. I admit that coming to terms with the doctor’s words, the horror of complications and similar scare tactics from other medical professionals imprinted scars that took a few years to heal. Once I recovered, I finally became confident enough to find a medical team with compassion. Today, I live without any major complications and I have a beautiful 14-year-old daughter.”

Elizabeth Snouffer is Editor of Diabetes Voice and Founder of www.diabetes247.org

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A person with latent autoimmune diabetes in adults (LADA)

“The first time I was diagnosed with diabetes in 2000, I was pregnant with my first son. My doctor told me I had a borderline case of which she noted was odd because I was young and thin and therefore not at high-risk for diabetes. She said all I needed to do was avoid eating sweets like cookies and cake. There was no mention of carbohydrates in general or blood sugar monitoring. Nor did she tell me that high blood sugar could have negative consequences for my baby.

Everything I read about gestational diabetes said to follow your doctor's instructions. So I did just that. I avoided cookies and cake and to satisfy my cravings for sweets I ate fruit and drank fruit juice. I thought those were healthy alternatives. I had no idea I was flooding my body with sugar. And I had no idea my baby would be born unexpectedly large and that his size would cause a complicated and frightening delivery.

Two years later I was pregnant with my second son. I was diagnosed with real gestational diabetes, not borderline. I received hasty instructions to check my blood sugar and inject insulin each night before I went to sleep. I had more knowledge about diabetes at that time because in a freaky coincidence, my husband was diagnosed with type 1 diabetes in 2002 and together sometimes injecting side by side, we learned a lot about what it meant to rely on insulin for survival. But now, more than a decade later, hindsight tells me the injections we took in those days were really shots in the dark.

A diabetes diagnosis cannot be merely a list of dos and don'ts. To give a diabetes patient a prescription for insulin and a set of instructions is like giving a key to someone who has never driven a car and telling them to fill up with gas, remember to use blinkers, check the oil from time to time and go. Diabetes is ultimately a self-managed disease and every diabetes patient should be empowered with the knowledge and confidence that living well with diabetes requires.

In 2008 when I was pregnant with my third son, I was as ready as one can be for another real diabetes diagnosis. For a number of years I'd had slightly elevated blood glucose levels, and doctors continuously told me type 2 diabetes was in my future. I suspected otherwise so when the doctor again diagnosed me with gestational diabetes I said, ‘I don't have gestational diabetes.’ I asked to be tested for the anti- bodies usually present in type 1 diabetes. Indeed, I had them. ‘So I have LADA?’ I asked the doctor. He shrugged and said, ‘It doesn't matter what you call it. What's important is that you treat it correctly.”

Jessica Apple is founder and editor of ASweetLife.org and DiabetesMediaFoundation.org

September 2014 • Volume 59 • Issue 3 DiabetesVoice 65 Diabetes in society

A person with type 2 diabetes in youth Words from a 14-year-old girl about her diagnosis and life with type 2 diabetes

“A trip to Germany. A delicious food festival: potato pizzas and indescribable bratwurst. ‘Shall we go do a health check-up?’ Harmless. A hospital. Blood tests. Glucose intake and a con- sultation in an hour. Tick tock. ‘I'm sorry to say this, but she has type 2 diabetes. Our first guess is,’ tears, ‘that it's due to her being overweight. Immediate action is required, before it escalates. She's young,’ sob, ‘she should do fine.’ Nothing more. Each doctor sent me to another, which continued up until the day I had to leave the country. No information. I wish I’d known. Type 2 diabetes runs in my family: my father, all of my grandparents. We knew the ropes. Still, it would've been nice to be officially told. ‘You'll just have to learn how to say no to all that junk you always eat,’ said my mother. Tears down my cheeks and years on my face. Three grey hairs found within the first month. The irony caught up: my mother preached, but didn't practice. The house stayed greased with all of the excess fats. What is diabetes? Nothing came to mind. I wish I’d known then. I wish I had been told. ‘Hush. All you need to know is that you will be cured if you just stop eating.’ Reckless youth. Breeding eating disorder. Nope. That doesn't exist. It's a disease for crazy people. You're not even slim. If you were slim, we would consider. If you were slim, you wouldn't have type 2 diabetes. Life went on, as food was decreased and soon, the hospital time came back. ‘Anaemia is a disease for vegetarians,’ oh how I wish I was able to break stereotypes. Although it was handled with just a couple of pills, I wish I could. ‘So is she clear? No more diabetes, right?’ ‘Sorry, ma’am’ ‘Sorry what? She didn't eat, she's got her diet, she barely eats. What else do you want’ ‘Deficiency.’ Mute. Tears, numbness. Who cares anymore? Learnt the hard way. Now, the tears have dried up. Equilibrium in a diet. A healthy lifestyle. I wish I’d known. If only I’d known.”

66 DiabetesVoice September 2014 • Volume 59 • Issue 3 Diabetes in society

A parent of a child with type 1 diabetes

“In 2010, my then eight-year-old­ was diagnosed with type 1 diabetes in the intensive care unit (ICU) of a public hospital in Hong Kong, where my family lived at the time. The attending physician calmly described that my son required insulin to reverse his near unconsciousness state, and that his dependence on insulin was both immediate and permanent. Once stabilised, he was transferred to the general paediatrics ward where a caring nurse taught us the now rote tasks of blood checks, carbohydrate counting, and injecting insulin, as well as the basics in handling emergencies. We were also warned to maintain a vigilant stance against long-term complications. The firm focus was on how not to die from diabetes. Guidance was scant, however, regarding how he might live well in its presence.

As the years have passed, we have had to figure this out on our own. We certainly did not realise how frustrating and often demoralizing it would be to relentlessly work to thread the eye of a moving needle. We had believed that success in ‘mastering’ diabetes care was simply a matter of practiced skill, discipline and knack for data. Our error was in assuming that mastery was the sole objective, and then life would be otherwise normal.

It took a while to appreciate that diabetes transcends medical compartmentalization, at least it has for us. It has impacted our relationships with one another, with family and friends, and at school. Diabetes emerges whenever we consider new experiences for our child, and when we make both important and minor decisions about our family’s wellbe- ing and future. It has deeply humbled us, and at the same time, diabetes has afforded us a new dimension through which to appreciate our child’s accomplishments, resilience and compas- sion toward himself and others. No one could have explained this to us when he was first diagnosed.”

Sarah Dyer Dana, New Jersey, USA

September 2014 • Volume 59 • Issue 3 DiabetesVoice 67 Diabetes in society The most difficult issues to tackle at diagnosis and in the first year of diabetes

Andrew J. Drexler

Every newly diagnosed individual with diabetes it may be possible to make it go away for a while, arrives with three questions: the most important thing is to deal with the anger. Why me? The Center for Disease Control in Atlanta has just What did I do? released data showing individuals whose diabetes How will it affect my lifestyle? is well controlled have a much lower incidence of complications than ever before. My own experience The answers to the first two questions are differ- confirms this but only in patients who understand ent for type 1 diabetes and type 2 diabetes but that my role is to provide the education for them to can usually be answered fairly quickly. For type 1 understand the tools to control the disease. Diabetes diabetes, the answers are quick – we don’t know (probably more than any other disease) forces the “why you” and we don’t know what causes type 1 patient to be their own doctor and the individual diabetes. For individuals with type 2 diabetes, the who understands that does well. The individual answer is often related to genetics and lifestyle. We whose anger prevents that cannot develop the part- cannot change the former but we can change the nership with the healthcare team that is critical for latter and that relates to the last question. a good outcome.

The most common reaction to the diabetes diagnosis Andrew J. Drexler is anger. The anger leads either to an attitude that I Andrew J. Drexler is Professor of Medicine, Co-Chief, Division of will fight the diabetes and make it go away or denial. Clinical Endocrinology and Diabetes and Hypertension Director, Gonda (Goldschmied) Diabetes Center in Los Angeles, California, USA. While for some individuals with type 2 diabetes

68 DiabetesVoice September 2014 • Volume 59 • Issue 3 Diabetes in society

The anger leads either to an attitude that I will fight the diabetes and make it go away or denial.

September 2014 • Volume 59 • Issue 3 DiabetesVoice 69 VOIceBOX The diabetes voicebox

People with visual impairment have been asked to comment on the recent format changes made to Diabetes Voice from this year's Issue 1 (March 2014) to Issue 2 (June 2014). Their response follows:

There are some changes in the latest Diabetes Voice magazine that improve accessibility:

The colours used have good contrast with the white paper; the point size of the text for the articles is better (our recommendation is 12pt minimum); the colour block behind the picture captions is more solid and therefore a better background to text. However, the contrast could be improved between the text colour and the background colour.

RNIB (the UK-based Royal National Institute for Blind People)

Being recently diagnosed with a diabetes-related eye complication is not fun, especially when you’re not prepared for it. My diagnoses have changed from diabetic macular edema (DME) to simply central serous retinopathy (a short, non-diabetes related issue) then to one very similar to that of diabetic maculopathy, which can occur with non-proliferative diabetic retinopathy (NPDR) which I have as well. I also am near-sighted and have astigmatism.

I am very glad to see the format changes in Diabetes Voice. The new format and font size enable me to read without straining my eyes as I usually do, which is a welcome relief.

Sarah Kaye, lives with type 1 diabetes, blog owner/Editor of www.sugabetic.me (USA)

70 DiabetesVoice September 2014 • Volume 59 • Issue 3 ONLINE OPENING DATES

JANUARY 2015 Registration

2 FEBRUARY 2015 Abstract submission

30 November – 4 December

Learn. Discover. Connect.

SCIENTIFIC PROGRAMME Chaired by Bernard Zinman Basic & Clinical Science Steven Kahn Diabetes in Indigenous Peoples Malcolm King Education & Integrated Care Unn-Britt Johansson Global Challenges in Health James Gavin III Living with Diabetes Gordon Bunyan Public Health & Epidemiology Edward Boyko

www.wdc2015.org #WDC2015

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worlddiabetesday.org

WDD app DV advert Sept 2014 FR.indd 1 25/08/2014 09:50:37