Diabetes Voice - March 2015 by International Diabetes Federation

Global perspectives on diabetes

Volume 60 â&#x20AC;&#x201C; March 2015

Embracing the digital future

19 International Diabetes Federation Promoting diabetes care, prevention and a cure worldwide Diabetes Voice is published quarterly and is freely available online at www.diabetesvoice.org. This publication is also available in French and Spanish. Editor-in-Chief: Rhys Williams Editor: Elizabeth Snouffer Editorial Assistant: Agnese Abolina Advisory group: Pablo Aschner (Colombia), Ruth Colagiuri (Australia), Maha Taysir Barakat (United Arab Emirates), Viswanathan Mohan (India), João Valente Nabais (Portugal), Kaushik Ramaiya (Tanzania), Carolyn Robertson (USA). Layout and printing: Ex Nihilo, Belgium, www.exnihilo.be

All correspondence and advertising enquiries should be addressed to: International Diabetes Federation, Chaussée de La Hulpe 166, 1170 Brussels, Belgium Phone: +32-2-538 55 11 – Fax: +32-2-538 51 14 diabetesvoice@idf.org © International Diabetes Federation, 2015 – All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means without the written prior permission of the International Diabetes Federation (IDF). Requests to reproduce or translate IDF publications should be addressed to the IDF Communications Unit, Chaussée de La Hulpe 166, B-1170 Brussels, by fax +32-2-5385114, or by e-mail at communications@idf.org. The information in this magazine is for information purposes only. IDF makes no representations or warranties about the accuracy and reliability of any content in the magazine. Any opinions expressed are those of their authors, and do not necessarily represent the views of IDF. IDF shall not be liable for any loss or damage in connection with your use

of this magazine. Through this magazine, you may link to third-party websites, which are not under IDF’s control. The inclusion of such links does not imply a recommendation or an endorsement by IDF of any material, information, products and services advertised on third-party websites, and IDF disclaims any liability with regard to your access of such linked websites and use of any products or services advertised there. While some information in Diabetes Voice is about medical issues, it is not medical advice and should not be construed as such.

ISSN: 1437-4064 Cover photo : © Riccardo Lennart Niels Mayer, Istockphoto.com

Contents

25 Diabetes Views

News in Brief Life expectancy studies in type 1 diabetes

New Appointment for former IDF Vice-President, Linda Siminerio

Passing of IDF volunteer who stood with courage for diabetes

On the Bookshelf

Currently in DRCP

g l o b a l c a m pa i g n World Diabetes Congress 2015: Global Challenges in Health Stream Gojka Roglic

World Diabetes Congress 2015: Living With Diabetes Stream Gordon Bunyan

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clinical care Continuous Glucose Monitoring (CGM) in resource limited settings

The double burden of diabetes and TB – experience in India

Kaushik Ramaiya

Vijay Viswanathan, Sathyavani Kumpatla, Anita Ravindran

Diabetes in society Supporting the highs and lows of college life – Interview with Christina Roth

Diabetes voices: Who is your greatest supporter?

Diabetes Voice t h r o u gh t h e d e c a d e s

Ashley Ng

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Diabetes views

A technological leap for improved diabetes awareness and education In our world today, there are people who are more likely to have access to a mobile phone and digital technology than clean water, a bank account, or even a source of electricity. In the year 2000, it was estimated that 394 million Internet users were scattered across the world. Today that number has grown to almost 3 billion people or 40% of the world population. Nearly half of all Internet users can be found in Asia, a region with the highest number of people with diabetes in the world. Meanwhile, it’s projected that Africa will top 300 million smartphone connections by 2017. The 21st century’s advancement in information technology and the emergence of online communities has influenced communication and education not only for people with diabetes and healthcare service providers, but the wider public, too. Diabetes online communities have become popular arenas for health information, and the benefits are becoming more apparent. The use of the Internet for creating awareness and understanding of diabetes as well as education and information in supporting diabetes self-management

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appears to have benefits for all people connected to diabetes, including those in low- and middle-income countries. M-health, the use of mobile phones and communication devices to educate consumers about healthcare in diabetes has become a major force in facilitating the dissemination of knowledge for new methods on treatments, cures, prevention and for the promotion of effective policy in diabetes healthcare and medical information. More people access information from mobile devices than any other form of technology, and therefore, it is where we need to be. As people with diabetes turn to the Internet for more information, developing an effective digital strategy is essential for IDFs long-term survival. In keeping up with the trend, Diabetes Voice will become the online, primary news channel for IDF, with the launch of a brand-new website in November 2015. Diabetes Voice will be converted into a responsive digital-only format, ceasing all print publication with this issue. Three more digital-only editions will be published until the November launch of the new IDF website. We will now have the opportunity to bring more flexibility with communication, collaboration and

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information sharing to the estimated number of 387 million people with diabetes and those at risk. In low- and middle-income countries, it is generally accepted that communication technologies are necessary for improving access and information by providing educational support. We need to develop a broader reach in those communities. This new change for Diabetes Voice will provide a modern global platform to learn more about care, education, prevention, research, health policy and economics, as well as themes related to life with diabetes. It is an opportunity whose time has come in order to retain our position as the authority on global perspectives in diabetes, and the voice for people living with diabetes. The “liberated” Diabetes Voice will serve as the parent online vehicle for all IDF news and information. In this way, breaking news and activity related to IDF’s activities – Policy and Practice, Education, Health Economics, World Diabetes Day and more – will be available with the advantage of easy access and sharing for thought provoking discussion. As we move Diabetes Voice to a digital format, it’s important that we honour IDF’s 60-year history for providing both global and local information to the diabetes community. The first IDF news “Bulletin”, issued in 1954, connected diabetes experts and practitioners in countries around the world. As our influence grew, we fulfilled our need to expand the English version into French and Spanish. In 1999, the IDF Bulletin was renamed Diabetes Voice, with the idea that the publication collectively represented the interests of all people living with or caring for diabetes. The next era for Diabetes Voice will utilise technology as a means to achieve improved diabetes awareness and education to the millions of people in need. This new direction for Diabetes Voice also marks the departure of Professor Rhys Williams, as he

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steps down from his role as Editor-in-Chief. IDF will miss Rhys’ direct leadership, wisdom and his steady presence, but those who work with him are comforted to know that he will be available to lean on as we make the transition to a new era. Rhys’ preparation to pass the red pen, so to speak, gives me an opportunity to reflect on his remarkable career and dedication to further the mission of IDF. Hailing from Swansea, Wales, in the UK, Emeritus Professor Rhys Williams early-on dedicated his entire career to diabetes research, and the development of health services and health policy on local, national and international levels. Since 1997, Rhys has been an exemplary professional volunteer for IDF. The time and effort he has given IDF and the range of leadership expertise is too numerous to list. From 2000 to 2006, Rhys was a Vice-president of IDF and chair of its Task Force on Diabetes Awareness, as well as Chair of IDF’s Task Force on Diabetes Health Economics, a member of the IDF’s Task Force on Prevention and Screening and member of the IDF/WHO Working Group. Rhys was a member of the International Organizing Committee for the 19th World Diabetes Congress in Cape Town, South Africa, in December, 2006. Rhys’ dedication as Editor-in-Chief for Diabetes Voice is unparalleled. His long-standing and continuing interest in diabetes has enabled him to share valuable and in-depth knowledge about best practice and research. Rhys’ commitment and passion for all people with diabetes and his broad influence has made a great difference in helping IDF achieve goals to improve the health of people with diabetes throughout the world.

Michael Hirst President, International Diabetes Federation

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Out with the old, in with the new

Following my retirement a few years ago, one of the great novelties that came my way was to be able, for once in my life, to submit a commissioned text-book chapter pretty well on time. No more good excuses for procrastination; no work-based crises to intercede in the writing process, just uninterrupted free time to get on with it and finish it. So, I submitted my chapter for the 5th Edition of the International Textbook of Diabetes Mellitus, as requested, in September 2012. I’m sorry to say that, at the time of writing, January 2015, the complete work still hasn’t appeared, either on paper or on-line. When we do have access to it, it will have 77 chapters written by a panoply of famous people and will weigh between 5 and 10 kilograms. It is also likely to be significantly out of date. To whom will this repository of yesterday’s knowledge be available? Will it have any influence on practice? Surely the days have gone of the multi-author, magnum opus, blockbuster textbook, printed on paper with no built-in programme for periodic updating save waiting for the next edition and its elephantine gestation?

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The days of Diabetes Voice printed on paper have gone. This is the last such issue. There may be some regrets. It was good to have hard copies available for people to browse through in the diabetes centre waiting room or in the staff common room. I, for one, will miss the satisfaction of receiving my personal copy through the post and holding it in my hands just as I miss the old-style Diabetologia. However, these regrets will surely be short lived. Diabetes Voice content will now be available as part of a new, web-based, fully co-ordinated IDF communications strategy. It’s a strategy fit for the 21st century, retaining the content quality of the past but with wider access for readers and a more co-ordinated corporate approach. Our President, in his editorial, comments on web access world-wide. Access is good and getting better, but what of quality? The overall quality of web-based information on diabetes or on any other topic for that matter is, to put it mildly, variable. A recently published academic study systematically examined 46 websites (written in English or German) purporting to provide information for decision making in the management of an individual’s

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type 2 diabetes. Overall, the information found was described as “basic” with most websites failing to “provide sufficient information to support patients in medical decision making”. The presence of an HON (Health on the Net Foundation) logo was associated with a better standard of information. We all need to be selective in what we read. That has always been the case, of course, but with the deluge of information and mis-information that is now the case on-line, the need to safeguard being led astray by convincing rubbish is greater than ever. So if the old-fashioned textbook is now dead, what has replaced it? In our December issue we featured an article on the on-line “living textbook” that is Diapedia. This source now has 450 articles on various aspects of diabetes and its management. It currently gets around 40,000 visits a month and last year had just under a quarter of a million new visitors. Its content is peer reviewed and accessible for authors to update as and when necessary.

Another valuable repository of information is the Cochrane Library, part of the world-wide Cochrane Collaboration. Its current version has just under 300 entries with ‘diabetes’ in its title or abstract or both. The range of topics of these “systematic reviews” is impressive and increasing. There is a cogent argument to be made that the systematic review is among the most important medical advances of the last 50 years. Of course, basic research is vital and must continue but the systematic, objective assessment of the quality and value of existing research and its applicability to modifying practice is of equal importance. My medical textbooks look good on the shelves but I’m busy throwing them out. (I’m not donating them to my local College of Medicine library since I don’t wish the next generation of doctors to be misled by out of date information.) My personal preference would be to read everything I need to read on the printed page but I guess even I must move with the times.

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

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News in brief

Life expectancy studies in type 1 diabetes For decades, researchers have been studying associations between type 1 diabetes and a significant reduction in life expectancy. One study released in November 2014 and two in January 2015 may shed new light on type 1 diabetes and long-term mortality. The analysis of 1998–2011 data from 33,915 adult patients with type 1 diabetes from the Swedish National Diabetes Registry and 169,249 matched controls was published in the November 20 issue of the New England Journal of Medicine (NEJM).

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This study, Glycemic Control and Excess Mortality in Type 1 Diabetes, assessed how varying degrees of glycaemic control impacted excess risk of death from any cause and cardiovascular disease when compared to the general population. It concluded that, compared to the general population, people with type 1 diabetes are still at risk of premature death. They found that the most common cause of death is cardiovascular disease in patients over thirty years of age. Even for those with wellcontrolled glycaemic levels, the risk was twice as high as the general population.

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News in brief

According to recent study findings published in Volume 313 of the Journal of the American Medical Association (JAMA), mortality rates for type 1 diabetes patients are still too high. Researchers from a study entitled, Estimated Life Expectancy in a Scottish Cohort With Type 1 Diabetes, 2008-2010, concluded “estimated life expectancy for patients with type 1 diabetes in Scotland based on data from 2008 through 2010 indicated an estimated loss of life expectancy at age 20 years of approximately 11 years for men and 13 years for women compared with the general population without type 1 diabetes.” The third study, Association Between 7 Years of Intensive Treatment of Type 1 Diabetes and Longterm Mortality, appearing in the same edition of JAMA, reported how intensive treatment of type 1 diabetes early in the disease is associated with lower mortality when compared with conventional therapy. Published by the Writing Group for the DCCT/EDIC Research Group, this study involved long-term follow-up of 1,441 patients ages 13 to 39 years in the Diabetes Control and Complications Trial, which ran from 1983 to 1993.

Urgent Action needed against NCDs Rising rates of heart disease, cancer, diabetes and other non-communicable diseases (NCDs) in developing countries will cost them $21.3 trillion over the next two decades, says The Council on Foreign Relations (CFR), an independent, nonpartisan membership organisation, think tank, and publisher. Researchers found that rates of NCDs in poorer countries are increasing faster, with younger people suffering from the conditions and with worse outcomes than in wealthier countries. Last year, NCDs killed 8 million people under the age of 60 in developing countries, according to researchers the Council on Foreign Relations. (see Figure)

For more information please see www.cfr.org, www.cfr.org/diseases-noncommunicable/ncds-interactive/p33802#!/

Figure. Deaths Caused by NCDs in Low- and Middle-Income Countries

Millions of deaths

28 26 24 22 20 18

1990

1995

2000

2005

2010

Year Data source: Institute for Health Metrics and Evaluation, Global Burden of Disease Study 2013.

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News in brief

New Appointment for former IDF Vice-president, Linda Siminerio

Linda Siminerio, R.N., Ph.D., has been named the new chair of the US National Diabetes Education Program (NDEP). Currently, Linda is a Professor of Medicine at the University of Pittsburgh. Established in 1997, the NDEP is a federally funded programme sponsored by the US Department of Health and Human Services’ National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). NDEP includes over 200 partners at the federal, state and local levels, working together to improve the treatment and outcomes for people with diabetes, promote early diagnosis, and prevent or delay the onset of type 2 diabetes. With more than 40 years of nursing and diabetesrelated experience, Linda is a prominent advocate for diabetes care and education. Her academic work on diabetes focuses on translational research and quality improvement, self-management, community interventions and overcoming barriers to care in underserved populations.

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In addition to her work at the University of Pittsburgh, Linda was a former Senior Vice-president of IDF (2003-2006), Chair of the Organising Committee for the IDF World Diabetes Congress Montreal 2009, and Chair of the IDF BRIDGES Executive Committee (2009-2014). She is also the former President of Health and Education at the American Diabetes Association and a recipient of the group’s Outstanding Educator in Diabetes Award. “Diabetes is a lifelong disease that demands selfcare every day, forever. The provision of quality services, self-management education, and support are the bedrocks of good diabetes care. People at risk and with diabetes along with their families and health care providers need and rely on evidence-based information. Organisations like the International Diabetes Federation, American Diabetes Association, and the National Diabetes Education Program work hard to assure that materials, programs and tools are available. Diabetes is the world’s epidemic and we have got to work with all of our partners to assure and disseminate the best prevention and treatment messages.”

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News in brief

Passing of IDF volunteer

who stood with courage for diabetes

It is with deep sadness and regret that the International Diabetes Federation (IDF) recently learnt of the passing of Susana Feria Etcheverry De Campanella, a former Vice-president of IDF and a past Chair of the IDF South and Central American Region (SACA). Susana served the Asociación de Diabéticos del Uruguay as a volunteer since 1970, and was elected President of the Association on three occasions. During this time, she was actively involved with association development, advocacy, education, recruitment and training of volunteers, working tirelessly on behalf of people with diabetes. In the social and political sphere, Susana developed plans to involve governments in diabetes issues. She was invited by the National Parliament of Uruguay to discuss the diabetes situation in the country, with particular focus on the role of diabetes associations in society. She was also a member of the Executive Committee of the MERCOSUR Diabetes Law Project. Susana was elected IDF Country Representative for Uruguay in 2000 and subsequently served as Chair of the SACA Region from 2003 to 2009. She

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then continued as a Vice-president of IDF for the period 2006-2009. “She was and is an inspiration,” said Anne-Marie Felton, a Vice-President of the International Diabetes Federation (IDF), and the co-Founder and current Chair of the Federation of European Nurses in Diabetes (FEND). “I had the great honour and pleasure of working with Susana as a Vice President of IDF and her membership of the Governance committee. Her commitment to people with diabetes and the evidence of her work in SACA and IDF is a beacon to all of us. She had great courage and at the right time always spoke ‘Truth unto Power’. As a person who lived with diabetes for over 50 years, Susana shared her experience with recently diagnosed people of all ages, focusing on the behaviour of parents of recently diagnosed children. She always emphasised her gratitude to her parents, husband, friends and interdisciplinary healthcare team who made it possible for her to live a full and healthy life. IDF expresses its deepest sympathy and condolences to her family for their loss. DiabetesVoice 11

News in brief

on the Bookshelf The Patient Will See You Now

By Eric Topol (Author) 384 pages, English, Basic Books (22 Jan 2015)

Eric Topol, practicing cardiologist, professor of genomics and director of the Scripps Translational Science Institute in La Jolla, California, examines what he calls medicine’s “Gutenberg moment”. Much as the printing press liberated knowledge from the control of an elite class, new technology (smartphone to machine learning) is poised to democratize medicine. In this new era, patients will control their data and be emancipated from a paternalistic medical regime in which “the doctor knows best”. Mobile phones, apps, and attachments will literally put the lab and the ICU in our pockets. In spite of these benefits, the path forward will be complicated: some in the medical establishment will resist these changes, and digitised medicine will raise serious issues surrounding privacy.

Approaches to Behavior: Changing the Dynamic Between Patients and Professionals in Diabetes Education

By Janis Roszler R.D. (Author), Wendy S. Rapaport (Author)

200 pages, English, American Diabetes Association (December 9, 2014) Approaches to Behavior provides information and simple tools that healthcare professionals can use to help patients move beyond feelings

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that prevent them from benefiting fully from any learning opportunity. Each chapter opens with an introduction to experts’ newest psychological understanding about a common emotion. This is followed by a list of easy techniques healthcare professionals can employ with their patients. Developed to help patients start to move past strong emotions and become more receptive to vital information that will improve their lives and help them take control of their diabetes.

The Childhood Obesity Epidemic: Why Are Our Children Obese And What Can We Do About It?

By Peter D. Vash (Editor)

320 pages, English, Apple Academic Press (20 April 2015) Child obesity is a serious condition that affects children around the world in growing numbers. With obesity comes an increased risk of other chronic diseases as well, making it even more important to understand and treat this condition from a variety of angles. This current volume seeks to understand the phenomenon of child obesity and presents a range of viewpoints on its prevalence, causes, and treatments. This reference volume offers a comprehensive and thorough guide to a field that is rapidly expanding and points to new directions in research and public policy, edited by Peter D. Vash, assistant clinical professor of medicine at UCLA Medical Center.

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News in brief

Volume 1 Issue 1 September 2013 ISSN 0379-0738

DIABETES

RESEARCH AND CLINICAL PRACTICE Official Journal of the International Diabetes Federation

Currently in Diabetes Research 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 the journal. Access information can be found in the QR code.

IMPACT OF DIABETES ON THE NATURAL HISTORY OF TUBERCULOSIS Restrepo BI, Schlesinger LS. Diabetes Res Clin Pract 2014; 106: 191-99 ‘There is an urgent need to implement strategies for TB prevention among the millions of DM patients exposed to Mycobacterium tuberculosis (MtB) worldwide, but knowledge is limited on how and when DM2 alters the natural history of this infection. In this review we summarise the current epidemiological, clinical and immunological studies on TB and DM and discuss the clinical and public health implications of these findings.’

ONLINE SOCIAL NETWORKING SERVICES IN THE MANAGEMENT OF PATIENTS WITH DIABETES MELLITUS: SYSTEMATIC REVIEW AND META-ANALYSIS OF RANDOMISED CONTROLLED TRIALS Toma T, Athanasiou T, Harling L et al. Diabetes Res Clin Pract 2014; 106: 200-11 ‘Social networking services (SNS) can facilitate realtime communication and feed-back of blood glucose and other physiological data between patients and healthcare professionals. This systematic review and meta-analysis aims to summarise the current evi-

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dence surrounding the role of online SNS in diabetes care … SNS interventions beneficially reduced HbA1c when compared to controls … SNS interventions also significantly improved systolic and diastolic blood pressure, triglycerides and total cholesterol. Subgroup analysis according to diabetes type demonstrated that Type 2 diabetes patients had a significantly greater reduction in HbA1c that those with Type 1 diabetes.’

REAL-TIME CONTINUOUS GLUCOSE MONITORING VERSUS INTERNETBASED BLOOD GLUCOSE MONITORING IN ADULTS WITH TYPE 2 DIABETES: A STUDY OF TREATMENT SATISFACTION Tang TS, Digby EM, Wright AM et al. Diabetes Res Clin Pract 2014; 106: 481-86 ‘This study recruited 40 patients who completed a parallel randomized controlled trial comparing a RT-CGM [see title for explanation] to an IBGM … Both groups used a secure website to submit bloodglucose readings and to receive feedback from their endocrinologist … At the end of 6 months, treatment satisfaction was measured using the 8-item Diabetes Treatment Satisfaction Questionnaire …Compared to the RT-CGM group, the IBGM group reported a significantly higher level of overall treatment satisfaction.’ DiabetesVoice 13

GLOBAL CAMPAIGN

World Diabetes Congress 2015: the Global Health Challenges Stream

Assessing global progress and results Gojka Roglic

The Global Health Challenges Stream at the upcoming IDF World Diabetes Congress in Vancouver addresses many issues of global importance, linking diabetes risk and outcomes with demographics, politics, nutrition, reproduction, co-morbidities, technology and trade. Many of the topics will touch on the solutions for translating scientifically proven concepts into population benefits. At least one-half of the world population now lives in cities and the urbanisation trend is expected to continue. Urbanisation has been recognised as increasing the risk of major noncommunicable diseases in developed countries. Speakers from several countries will review the current evidence on the varying effect that living in cities has on diabetes in developing countries and what can be or is being done to mitigate negative effects. IDF 14

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will present the results of an assessment of urban environments, and how they score in their potential towards the prevention of diabetes. While primary prevention of type 2 diabetes has not quite lived up to the expectations generated by many robust studies, there are some encouraging and instructive examples from very different settings, both from developed and developing countries. The importance of diet to influence the risk of diabetes and its complications is widely accepted. However, we will hear about more recent research that shows how some foods affect diabetes risk through pathways other than increasing obesity. Experiences and results of some policy changes which have been introduced to reduce the consumption of unhealthy food will be discussed.

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GLOBAL CAMPAIGN

The world is still far from achieving the treatment targets committed to at the World Health Assembly in 2013. This Stream will also address the persistent problem of poor access to essential medicines to manage diabetes. In 2015, IDF will conduct a worldwide survey of access to medicines that are essential for the management of diabetes. The results of this analysis will be presented, along with examples of some successful national efforts and WHO tools to help policy makers in assessing the situation and choosing appropriate policy options. Loss of limb and loss of vision remain major problems of diabetes, particularly in low-resource settings. Innovative solutions are being explored globally and we shall see that it is possible to reduce the risk of amputation even in the poorest settings. The Global Health Challenges Stream will also provide the opportunity to hear the findings of the first multi-country assessment of retinopathy screening and treatment, and about a new partnership to reduce the risk of vision loss in low-resource settings. Psychological aspects of diabetes, particularly associated depression and distress related to coping with treatment demands have been receiving increasing attention in recent years. The nature of the relationship and the differences between populations are continuously being investigated and new data will be presented in this Stream. New methods to assess the burden of depression in diabetes are evolving and practical approaches for addressing diabetesrelated distress will be useful to healthcare workers who daily manage people with diabetes. The threat of unmanageable numbers of children with type 2 diabetes is continuously present, despite a few reports of decreasing numbers of overweight children in developed countries. There are no such reports from developing countries and this Stream will cover some important aspects of prevention, management and treatment of type 2 diabetes in

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children. We will also hear how lives are saved by providing insulin to poor children with type 1 diabetes through the IDF Life for a Child Programme. On the maternal side, the International Federation of Gynaecology and Obstetrics will inform us of their latest recommendations for diagnosing and managing gestational diabetes. Speakers from developing countries will present the challenges of managing gestational diabetes (GDM) and the development of a model of care for GDM in low-resource settings. Mobile phone technology is emerging as a potentially valuable tool in diabetes prevention and management thanks to its widespread use. The mDiabetes project is a new collaboration between WHO and the International Telecommunications Union and there have been some encouraging preliminary results. We look forward to hearing about these new possibilities to manage and possibly prevent diabetes. Gojka Roglic Gojka Roglic is a medical doctor who trained in clinical diabetology and epidemiology. She is currently Medical Officer with the Diabetes Unit at World Health Organization.

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GLOBAL CAMPAIGN

World Diabetes Congress 2015: Living With Diabetes Stream

Triumphing over complexity and flourishing with diabetes Gordon Bunyan

Interest in the Living With Diabetes Stream (LWD) grows stronger with every IDF World Diabetes Congress as the enthusiasm of its audience increases. It also reflects an unmet need and indicates the power of the information, and shared experiences our delegates exchange when given this unique opportunity to meet and network. At the next World Diabetes Congress in Vancouver, Canada (30 November-4 December, 2015), the LWD Stream will feature as much variety, colour and enlightenment as the culture and community of Vancouver’s energetic cityscape. Diabetes is a complex condition and managing it well demands hundreds of decisions every day, not just by the person with diabetes. Those living with diabetes often do not have the objectivity to recognise their success or the value of that experience. The LWD Stream will endeavour to exploit 16

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Diabetes is a complex condition and managing it well demands hundreds of decisions every day.

that experience and cover a range of topics aimed at ensuring people with diabetes, their healthcare professionals (HCPs) and organisations which support them, learn to flourish with diabetes and celebrate daily triumphs. Living with diabetes is more than a medical condition. With speakers from all IDF Regions, we will explore how member associations have and can further improve the delivery of systems and support to improve outcomes for people with diabetes, including lessons for developed countries from developing countries.

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GLOBAL CAMPAIGN

Important themes for the 2015 LWD Stream include: Advocacy Benchmarking will be made to see what can be learned from other NGOs that tackle HIV/AIDS and heart disease. The LWD Stream will also examine how much can be gained from engaging people with diabetes in member organisations to improve outcomes and reduce the burden for healthcare professionals who run organisations as well as medical practices in many countries, and how advocacy and lobbying can be improved. Stigma The stigma of diabetes and its impact is increasingly recognised as a problem, and discrimination remains serious around the world. We want to celebrate the diabetes ‘wins’ and take lessons from those successes for those that still confront it in their daily lives. Research We will examine whether research is giving us what we want, whether the insulin pump is the answer for everyone in every community, or whether alternatives are just as effective and more viable economically. Other topics include how we can live better while we wait for a type 1 diabetes cure; how we might have lived had we known we would develop type 2 diabetes, and whether the messages around type 2 diabetes prevention are culturally appropriate in a global context. The LWD Stream will be made up of a series of symposia, meet the expert sessions, open forums and debates. Topics will range from an exploration of the relationships between carers (partners, spouses and children as well as parents) and people with diabetes. Examples include: ■ a debate between those who are devotees of the insulin pump and those who are not;

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GLOBAL CAMPAIGN

■ an open forum on research and whether it is delivering solutions for everyday life while we wait for a cure; ■ a look at effective advocacy and lobbying and lessons from the winners in the fight against discrimination; ■ an examination of diabetes online and peer support, including benefits and shortfalls; ■ a review of strategies for better HCP communication for both the person with diabetes and professional; ■ a clinical and psychological look at diabetes distress, complications, and how age of diagnosis impacts outcomes; ■ a clinical and psychological look at the seriousness of hypoglycaemia, and its after-effects. Each session will be designed to increase the amount of time for discussion and the exchange of ideas and all speakers will provide specific “take aways” - ideas that can be utilised after the World Diabetes Congress is over.

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We want to ensure there are lessons here for everyone. The LWD Stream programme aims to acknowledge the complexity of diabetes that is too often taken for granted. It will explore the difficulties and unpredictability associated with managing all types of diabetes and how these complexities can affect those who live with and love people with diabetes. We will explore how to improve outcomes for both in a symposium dedicated to this subject. The LWD Stream is designed to engage a broad audience with a focus on discussion rather than lectures. It will be a great learning opportunity for people affected by diabetes and healthcare professionals alike, and we look forward to your being part of it in Vancouver.

Gordon Bunyan Gordon Bunyan is Vice President & Chair, Board Standing Committee on Governance and Membership for IDF and Lead for the Living with Diabetes Stream for the World Diabetes Congress, Vancouver 2015. He has lived with type 1 diabetes for nearly 40 years.

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clinical care

Continuous Glucose Monitoring (CGM) in resource limited settings Kaushik Ramaiya

Continuous Glucose Monitoring (CGM) is a relatively new technology which has the potential to assist people living with type 1 or type 2 diabetes and treated with insulin to achieve the goal of optimum control of blood glucose. Here, Kaushik Ramaiya considers the advantages and some of the disadvantages of this technology and comments on it from the point of view of a health professional working in a resource limited setting. In the final analysis, judgements as to its usefulness will be based not only on its effectiveness but also its cost effectiveness. However, as with many other similar developments, the only economic evidence we have to date relates to more affluent settings.

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CGM sensor attached to abdomen and hand-held monitor. © Elizabeth Snouffer

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clinical care

Continuous glucose monitoring (CGM) provides a continuous measure of interstitial glucose levels, a complete pattern of glucose excursions, real time alarms for thresholds and prediction of hypo and hyperglycaemia as well as rate of change alarms for rapid glycaemic excursions. For CGM users, there is a significant improvement in blood glucose control without increasing the risk of hypoglycaemia. For people with type 1 diabetes using either multiple daily injections (MDI) or insulin pumps, CGM is very useful in improving glycaemic control without increasing the risks of severe hypoglycemia.1, 2 In the STAR 3 study, wherein 485 subjects switched from MDI and routine blood glucose testing to CGM, there was a significant improvement in HbA1c without an increase in frequency of severe hypoglycaemia or diabetes ketoacidosis (DKA) in both adults and children.3 CGM use has also been effective in other settings such as ICU (to maintain acceptable blood glucose

DiabetesVoice

targets for critically ill patients);4,5 infants (having cardiorespiratory bypass surgery);6 newborn infants at risk for neonatal hypoglycemia;7 patients with cystic fibrosis who are at risk of developing cystic fibrosis related diabetes (CFRD);8 and monitoring patients with glycogen storage disorders specifically when combined with urine ketone and/or blood lactate measurements.9

For CGM users, there is a significant improvement in blood glucose control without increasing the risk of hypoglycaemia

In resource limited settings, where access to diagnosis, monitoring and treatment is a challenge,10 the use of CGM has its own limitations where the practical issues may result in these devices being more of a burden than a benefit.

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From the perspective of the person with type 1 or type 2 diabetes, major barriers are awareness, cost, supply of usable equipment and technology. There is evidence that many people with diabetes reduce their frequency of self-monitoring of blood glucose (SMBG) after starting on CGM.11 This is contrary to what is required i.e. SMBG should be used as the primary data measure for all insulin dosing decisions whilst CGM is used to monitor the glycaemic trends based on which dosing adjustments can be made. In addition, towards the end of sensor life, the accuracy of the device is questionable and thus SMBG is still a necessary measure at regular intervals to make treatment decisions, calibrate the device and confirm any unusual CGM values.12 On occasion, SMBG results may be inaccurate as compared to CGM results.13 This “double” testing further increases the costs and confuses people with diabetes who have limited awareness, education and predisposed to the information technology gap. The other challenge for people with diabetes using CGM devices is the high and low glucose threshold alarms. Unless the interpretation of these alarms and their adjustments and settings are well known to the person, this can be one of the major reasons for discontinuation of use of CGM devices.12 From the physician and healthcare provider perspective, major barriers include training, indirect costs (related to time required to download the data, its interpretation and face to face time with the patients) and support services (education, communications). In an environment where the majority of people with diabetes have limited access to even basic commodities such as insulin, syringes, monitoring devices and education, the introduction of CGM devices is still a distant dream except for the privileged few. In many circumstances, insulin is used for sheer survival rather than adequate blood glucose control.

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Kaushik Ramaiya Kaushik Ramaiya is a Consultant Physician and Assistant Medical Administrator at Shree Hindu Mandal Hospital in Dar es Salaam, Tanzania, and a member of the Diabetes Voice Advisory Board.

References 1. Hirsch IB, Abelseth J, Bode BW, et al. Sensor-augmented insulin pump therapy: results of the first randomized treat-to-target study. Diabetes Technol Ther 2008; 10:377–83. 2. T amborlane WV, Beck RW, Bode BW, et al. Continuous glucose monitoring and intensive treatment of type 1 diabetes. N Engl J Med 2008; 359:1464–76. ergenstal RM, Tamborlane WV, Ahmann A, et al. Effectiveness of sensor3. B augmented insulin-pump therapy in type 1 diabetes. N Engl J Med 2010; 363:311–20. 4. F infer S, Chittock DR, Su S, et al. Intensive vs conventional glucose control in critically ill patients. N Engl J Med 2009; 360:1283–97. 5. H olzinger U, Warszawska J, Kitzberger R, et al. Real-time continuous glucose monitoring in critically ill patients: a prospective randomized trial. Diabetes Care 2010; 33:467–72. gus MS, Steil GM, Wypij D, et al. Tight glycemic control vs standard care 6. A after pediatric cardiac surgery. N Engl J Med 2012;367:1208–19. arris DL, Battin MR, Weston PJ, et al. Continuous glucose monitoring 7. H in newborn babies at risk of hypoglycemia. J Pediatr 2010;157:198–202. e1. 8. Schiaffini R, Brufani C, Russo B, et al. Abnormal glucose tolerance in children with cystic fibrosis: the predictive role of continuous glucose monitoring system. Eur J Endocrinol 2010; 162:705–10. 9. W hite FJ, Jones SA. The use of continuous glucose monitoring in the practical management of glycogen storage disorders. J Inherit Metab Dis 2011; 34:631–42. 10. B eran D, Yudkin JS & de Courten M. Access to care for patients with insulinrequiring diabetes in developing countries: case studies of Mozambique and Zambia. Diabetes Care 2005; 28: 2136–2140. 11. D iabetes Research in Children Network (DirecNet) Study Group. Continuous glucose monitoring in children with type 1 diabetes. J Pediatr 2007; 151:388-93. illiam LK, Hirsch IB: Practical Aspects of Real-Time Continuous Glucose 12. G Monitoring. Diabetes Technol Ther 2009; 11: 76-82. irsch IB, Bode BW, Childs BP, et al. Self-monitoring of blood glucose 13. H in insulin and non-insulin using adults with diabetes: consensus recommendations for improving SMBG accuracy, utilization, and research. Diabetes Technol Ther 2008; 419-39.

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clinical care

The double burden of diabetes and TB – experience in India Vijay Viswanathan, Sathyavani Kumpatla, Anita Ravindran

At present, India is facing a dual epidemic of diabetes and tuberculosis (TB). In 2013, there were an estimated 65.1 million people with diabetes and the number is projected to rise to 109 million in 2035.1 Today it is estimated that 80% of all diabetes cases occur in low- and middle-income countries. People with diabetes (type 1 or type 2 diabetes) are at higher risk of contracting TB. India holds the record for the highest number of people infected with Mycobacterium tuberculosis. In 2013, out of an estimated global incidence of 9.0 million TB cases, 2.3 million cases occurred in India.2 Therefore with the increasing incidence of TB and DM becoming alarming, India has the colossal burden of combating both diseases at once. Co-management of DM and TB Diabetes is known to impair the immune system making the individual susceptible to microbial infec22

DiabetesVoice

tions.3 Several epidemiological studies have further explored the relationship between diabetes and TB and found increased prevalence of active TB among people with diabetes.4-6 A systematic review of cohort studies reported that people with diabetes had a three fold higher risk of contracting TB when compared to those without diabetes.6 Two recent reports from South India showed a high prevalence of diabetes in people with TB registered under the Revised National Tuberculosis Control Programme (RNTCP).7,8 Additionally, there is evidence that insulin dependence, as a marker for severity of disease, and poor glycaemic control predicts increased TB risk. In one study, patients with HbA1c greater than 7% had a three times increased risk of active tuberculosis compared with those with HbA1c less than 7%.9 The association between diabetes and TB is bidirectional: diabetes exerts a negative effect on the clinical course of TB with increased risk of treatment

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clinical care

failure, relapse and death;10 while TB exacerbates poor glycaemic control in people with diabetes.11 Further concerning is the effect of anti-TB drugs on blood glucose values, especially rifampicin, a potent hepatic enzyme-inducer, which can cause several drug interactions with co-administered anti-diabetic drugs. Rifampicin accelerates the metabolism of oral anti-diabetic drugs and lowers their plasma levels causing hyperglycaemia.12 Therefore drug interactions when diabetes and TB are both present may require an adjustment in treatment to improve the management of dually affected patients. One of the consequences of the double burden of diabetes and TB is that it takes approximately 3 months more to cure a person with diabetes of their TB, than it does in patients who don’t have diabetes. TB’s severe effect on glycaemic control has a negative impact on the complications of diabetes, such as ischemic heart disease and kidney failure. The risk of dying from TB in people with diabetes is about 4 to 5 times higher than in people with TB who do not have diabetes. Screening and diagnostic tools People with TB should be screened routinely for diabetes and people with diabetes who have symptoms should be investigated for TB since the clinical signs of TB are different in people with DM. In India, fasting plasma glucose (FPG) and glucose tolerance test (GTT) are the common methods used to diagnose diabetes. TB is associated with stress hyperglycaemia and diagnostic tools that measure only plasma glucose concentration cannot differentiate stress hyperglycaemia from diabetes.13 Currently, HbA1c is being recommended for screening and diagnosis of diabetes.14 A recent study compared the performance of HbA1c and FPG for screening for diabetes among people with TB in South India and reported HbA1c to be better diagnostic tool for the identification of diabetes.15

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Several epidemiological studies have further explored the relationship between diabetes and TB and found increased prevalence of active TB among people with diabetes. Addressing the dual burden in the Developing World In 2011, the World Health Organization and the International Union Against Tuberculosis and Lung Disease developed a collaborative framework for care and control of TB and diabetes. The objective of the framework was to guide healthcare providers, at organisational and clinical levels, about the prevention and control of diabetes and TB.16

People being screened for TB and diabetes in the state of Tamil Nadu.

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For the effective management of diabetes and TB, key strategies are required to ensure optimal treatment is provided to people with both diseases. Early detection of TB in people with diabetes and vice versa is very important.

Vijay Viswanathan Vijay Viswanathan is the Head and Chief Diabetologist at M.V. Hospital for Diabetes and Prof. M. Viswanathan Diabetes Research Centre (WHO Collaborating Centre for Research, Education and Training in Diabetes) at Chennai, India.

Dr Sathyavani Kumpatla Dr Sathyavani Kumpatla is Head of Laboratory Services at Diabetes Research Centre, Chennai, India.

Dr Anita Ravindran Dr Anita Ravindran is Medical Writer at Diabetes Research Centre, Chennai, India.

References 1. International Diabetes Federation. IDF Diabetes Atlas, 6th edn. IDF. Brussels, 2013. 2. W orld Health Organization. WHO Global Tuberculosis Report 2014. www.who.int/tb/publications/global_report/en/ artens GW, Arikan MC, Lee J, et al. Tuberculosis susceptibility 3. M of diabetes mice. American Journal Respiratory Cell and Molecular Biology 2007; 37: 518-24. 4. S tevenson CR, Critchley JA, Forouhi NG, et al. Diabetes and the risk of tuberculosis: a neglected threat to public health.Chronic Illness 2007; 3: 228-45.

The World Diabetes Foundation (WDF) was founded in 2002 to support developing countries in the prevention and treatment of diabetes. WDF in partnership with Prof. M. Viswanathan Diabetes Research Centre (DRC) has completed a project on DM and TB. Around 1,000 TB physicians, 300 paramedical staff, 350 healthcare workers, 2510 people with TB actively participated in the project where training was imparted in the prevention of diabetes and TB. The training programme was held at a primary healthcare setting in 22 TB units in three districts: Thiruvallur, Kanchipuram and Chennai in the state of Tamil Nadu, India. A pre-tested questionnaire was used to assess the impact of the session before and after the training programme. A significant increase in knowledge on the screening and management of diabetes was observed among the healthcare providers.

DiabetesVoice

5. S tevenson CR, Forouhi NG, Roglic G, et al. Diabetes and tuberculosis: the impact of the diabetes epidemic on tuberculosis incidence. BMC Public Health 2007; 7: 234. 6. J eon CY, Murray MB. Diabetes Mellitus increases the risk of active tuberculosis: a systematic review of 13 observational studies. PloS Medicine 2008; 5:e152. ijay V, Satyavani K, Vigneswari A, et al. Prevalance of diabetes and 7. V pre-diabetes and associated risk factors among tuberculosis patients in India. Plos ONE 2012; 7: e41367. alakrishnan S, Wilson N, Nair S, et al. High diabetes prevalence 8. B among tuberculosis cases in Kerala, India. Plos ONE 2012; 7: e46502. eung CC, Lam TH, Chan WM, et al. Diabetic control and risk of 9. L tuberculosis: a cohort study. Am J Epidemiol. 2008; 167:1486–94. ooley KE, Chaisson RE. Tuberculosis and diabetes mellitus: convergence 10. D of two epidemics. The Lancet Infectious Diseases 2009; 9: 737-46. 11. J eon CY, Harries AD, Baker MA, et al. Bi-directional screening for tuberculosis and diabetes: a systematic review. Tropical Medicine & International Health 2010; 15: 1300-14. eysell SK, Moore JL, Keller SJ, et al. Therapeutic drug monitoring 12. H for slow response to tuberculosis treatment in a state control program, Virginia, USA. Emerging Infectious Diseases 2010; 16: 1546-53. onora E, Tuomilehto J. Pros and cons of diagnosing 13. B diabetes with A1c. Diabetes Care 2009; 32: 1327-34. he International Expert Committee. International Expert committee 14. T report on the role of A1c assay in the diagnosis of diabetes. Diabetes Care 2009; 32: 1327-34 15. S atyavani K, Vigneswari A, Vijay V, et al. Evaluation of performance of A1c and FPG tests for screening newly diagnosed diabetes defined by an OGTT among tuberculosis patients – a study from India. Diabetes Research and Clinical Practice 2013; 102: 60-4. 16. International Union Against Tuberculosis and Lung Disease, World Health Organization. Collaborative Framework for Care and Control of Tuberculosis and Diabetes. http://whqlibdoc.who.int/publications/2011/9789241502252_eng.pdf

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Diabetes in society

Supporting the highs and lows of college life Interview with Christina Roth Ashley Ng

Balancing the rigours of college life and type 1 diabetes can be tough without adequate support. Making a successful transition from home life to new independence at college is exciting but also requires a commitment to prioritize health and well-being with type 1 diabetes. Challenges may include barriers to access for medicine or healthcare services and emotional isolation. Christina Roth, who was diagnosed at 14 years with type 1 diabetes, founded the College Diabetes Network (CDN) when she was in her junior year at the University of Massachusetts, Amherst (USA). Christina’s mission was to empower and improve the lives of students

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living with type 1 diabetes through peer support and access to information and resources. Today, Christina is the CEO for CDN which has grown from one college campus group in 2009 to a nationally recognized non-profit organization with 79 chapters throughout the USA. In the following interview, Christina Roth answers a few questions about how the network assists students with type 1 diabetes to better and adapt to college life. Although CDN has organically grown in response to the needs of college students in America, many of the issues discussed are common to college students around the world.

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Diabetes in society

College students with type 1 diabetes gather for a CDN Chapter meeting.

Ashley: What are some of the challenges that exist for a student with type 1 diabetes preparing to attend and adapting to college?

Ashley: The search and preparation for college starts in high school, how are students with type 1 diabetes able to access information about CDN?

Christina: One of the most common challenges that we see is the sudden change in support systems available to students. As they leave for college, they often leave a support system that they’re familiar with, such as their parents and friends, and they need to create new ones.

Christina: Our website was designed and built with young adults in mind. The site is a hub of information and resources for students in all stages of the college process, whether they are applying to colleges, already on campus, or getting ready to graduate.

This situation also provides a unique opportunity for students to reinvent themselves. They are re creating their identity, and sometimes they don’t want diabetes to be a part of that identity.

DiabetesVoice

Ashley: The cost of college alone can be a hard time for students lacking adequate financial support. Many students may be challenged by the cost of supporting their diabetes, including access to important supplies for insulin therapy and devices.

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Diabetes in society

How does CDN help students with diabetes who are looking for scholarships? Christina: CDN has compiled a pretty comprehensive list of scholarships currently available to students with diabetes on our website. We are always on the lookout for additional scholarships, and will add them as soon as we become aware of them. Ashley: Choosing a college depends on many important factors and is ultimately a huge decision for students. How does CDN provide guidance on college applications for students with diabetes? Christina: Our “Looking at Schools” resource includes questions students can ask or points to consider while researching various colleges in order to determine what school is right for the student. These considerations include the distance of the school from home, where they would be able to receive medical care, and what the living situation would be.

CDN provides students the ability to connect with their peers, which often empowers and motivates them in their diabetes management. Ashley: Most students will be transitioning from a paediatric clinic to adult services for their diabetes management when they enter their first year of college. How does CDN provide support in this area? Christina: We understand that there is a huge loss of follow up during this transition period where students aren’t accessing a diabetes healthcare team, which could potentially impact on their diabetes self-care. The “Doctor’s Appointments” page on the CDN website provides information to students on how to find a new provider, and how to determine if the new provider is right for you.

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That being said, many clinical providers underestimate the impact of other factors that affect diabetes management, such as peer support. CDN provides students the ability to connect with their peers, which often empowers and motivates them in their diabetes management. Ashley: “Preparing to Leave” is a practical guide for the lead up to and during the process of moving into college. How did this resource guide come about? Christina: Like many things developed by the CDN, the “Preparing to Leave” guide was created organically and was sketched out over a few years. We compiled experiences from students, parents, and healthcare professionals and included topics such as developing a communication plan with family, friends, practitioners, pharmacies and how to troubleshoot problems into a practical guide for students to help ease their transition into college. Ashley: How do students who are diagnosed with type 1 diabetes at college find out about CDN? Christina: Many college students who are diagnosed during their college years receive the diagnosis through their campus health clinic. As many college campuses are now aware of CDN, they are quick to put them in touch with us, or refer them to our website. College students are also fairly independent by this time in their lives, and they will often do their own research online and find us there. Ashley: Could you walk us through what happens during a typical Chapter meeting? Christina: Each CDN Chapter is initiated and run by students, therefore each meeting is based on what members of that chapter want or need. Some chapters may hold a dinner every few weeks; some have speakers or bring in representatives

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Diabetes in society

from diabetes companies, while others may focus on holding awareness campaigns on campus. This flexibility allows for students to be empowered, maintain ownership of their college chapter, and commitment to CDN. We also work closely with student leaders from each chapter to ensure their values align with CDN’s by providing them a toolkit with resources and safeguards for support. Ashley: Are students with type 2 diabetes invited to participate in CDN programmes and events as well? Christina: For the moment, due to funding and capacity restrictions, we only focus on type 1

diabetes. That being said, most CDN chapters welcome people with type 2 diabetes to meetings, and a few chapters have regular members living with type 2 diabetes. Ashley: I heard that CDN also has alumni groups. What is the focus of CDN alumni? Christina: CDN alumni are often keen to keep mentoring and helping their college chapters. Currently we offer an alumni membership, which includes professional development, internship, and job opportunities with our partners and corporate members.

To find out more about the College Diabetes Network and how they can assist you, please visit their website at collegediabetesnetwork.org.

Ashley Ng Ashley Ng is a PhD candidate in the field of diabetes selfmanagement at Deakin University, Melbourne, Australia and a Young Leader in Diabetes for IDF.

Christina Roth

DiabetesVoice

Christina Roth is the Chief Executive Officer and founder of the College Diabetes Network (CDN).

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Diabetes in society

Diabetes voices: Who is your greatest supporter?

Managing type 1 diabetes and type 2 diabetes is time consuming, complex, and often difficult. Diabetes burnout is reported as a common symptom, with many people feeling both overwhelmed and defeated by diabetes and frustrated by the burden of diabetes self-management. In order for treatment and outcomes to be successful, the original DAWN™ study found that person-centred diabetes care and collaboration among people living with diabetes, their family members, healthcare professionals, and other stakeholders is key. Most people living with diabetes need help and encouragement to actively self-manage and successfully perform daily tasks. Important characteristics of empowerment include social support, motivation, emotional adjustment to diagnosis, self-management skills, self-efficacy, and recognition of challenges and success. In this instalment of Diabetes Voices, we asked three people living with diabetes to tell us who or what has been their greatest supporter in living more successfully with diabetes.

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Meet Scott King, a biotechnology entrepreneur who manages his type 1 diabetes under the care of a doctor he has seen since 1979. Emma Williams tells us about her six-year-old son Jac who was diagnosed with type 1 diabetes as a toddler. Learn how Jess, the family’s glucose sensing alert dog, has changed Jac’s and Emma’s confidence in living with and caring for diabetes. Finally, IDF friend and volunteer, François Gishoma explains how support and being supportive to others helps, but attitude about diabetes is what has been key for him to move forward in life.

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Diabetes in society

A boy’s best ‘life-saving’ friend Emma Williams

Our journey with type 1 diabetes started when our son Jac was two years old. He was diagnosed after nearly falling into a coma and being close to death. Like most parents thrown into the situation, we were utterly devastated and had to learn how to deal with the daily turmoil of checking blood glucose levels, injecting insulin into the body of a petrified toddler, and managing the constant highs and lows of fluctuating blood glucose. At the time of Jac’s diagnosis, we also happened to have a new litter of Springer Spaniel puppies that were two weeks old. Who knew that one day the puppy we kept from the litter would grow up to be Jac’s life-saver day in and day out? Jac was four years old when we started to seriously consider training our two-year-old puppy Jess. Jac’s blood glucose levels were constantly unstable with him suffering many episodes of hyperglycaemia and hypoglycaemia every day. This was adversely impacting Jac’s life. A wonderful dog trainer from America (KC Owen www.tattletailscentdogs.com) visited us and three other families for a week to explain how we could begin to train our dogs for glucose sensing. Jess picked up what we wanted her to do within the week and started alerting us to Jac’s low blood glucose levels almost immediately. She did this by bringing me his blood glucose testing kit. After weeks at home

DiabetesVoice

of ongoing training, Jess became more and more reliable and would alert us every time she detected Jac’s blood glucose dropping day and night. I decided to approach Medical Detection Dogs, a member of Assistance Dogs UK (ADUK), a coalition group of not-for-profit Assistance Dogs organisations, including guide dogs, who train accredited Medical Alert Assistance Dogs. It was important for us to understand what they thought about Jess and her progress. We were delighted when they decided to take her on for an ‘in training’ period.

Jess became more and more reliable and would alert us every time she detected Jac’s blood glucose dropping day and night. Currently, Jess has been going through intensive training to meet the requirements for ADUK and European standards and we hope that she will be fully qualified soon. Medical Detection Dogs have given us a tremendous amount of support, providing us with advice and guidance every step of the way. It has become easy to see how Jess improves our lives every day. She now alerts consistently to blood glucose over 11 mmol/L (200 mg/dL) and under 4.6 mmol/L (85 mg/dL). Jac, who is now six years

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Diabetes in society

Jac, who was diagnosed with type 1 diabetes at age 2 and his dog, Jess who was trained to detect blood glucose levels.

old, is much more confident about going out in public, as he now knows that Jess will alert him or us that he needs to check his blood glucose. Unfortunately Jac is hypoglycaemic and hyperglycaemic unaware, and therefore he would usually be near collapse before Jess was trained to alert us. As Jess can now accompany us everywhere in public, Jac rarely reaches a crisis point anymore and we deal with the highs and lows of blood glucose before they become dangerous. Jac tells everybody that Jess is his best friend. They have such a close

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bond and it is amazing to watch Jess alert Jac to changes in blood glucose. We can see the concern for Jac in her eyes. They are a fantastic team and we are very proud of them! Emma Williams Emma Williams, mother to Jac and his big brother, Meical, lives in north Wales, UK. Emma works as a support worker for adults with learning difficulties. After guiding Jess through the scent training process to become a Diabetes Alert Dog, and seeing what a difference it has made to their lives, Emma is keen to help other people in the same situation.

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Diabetes in society

Achieving paradise on earth Scott King

My greatest supporter is Dr. Andrew Drexler, Chair of Endocrinology at the UCLA Medical School. I met him first many years ago in 1979. I had developed type 1 diabetes in 1977. I was participating in a medical study at Cornell Medical Center and Dr. Drexler was just returned from his residency in endocrinology at Washington University in St. Louis, Missouri. As he walked by a room in which a medical student was attempting to cannulate the veins of my arm he turned to the doctor-in-training and said, “What are you doing to this man?” (Life lesson: do not let a medical student attempt to cannulate your veins when you have the collapsing sort.)

The remarkable thing in retrospect is that Dr. Drexler always knew which innovations to suggest at each step of my evolution into becoming a modern tech-savvy diabetes patient. Of course, early on, I was always into the latest ideas. More recently I’ve become more conservative, waiting until the medical evidence supported the innovation. A few years ago, when I switched to continuous glucose monitoring and the insulin pump, I felt we had achieved paradise on earth in diabetes control.

As we chatted, I realized this new “New Yorker” in my life seemed to know a lot of the latest on diabetes advances. We began to work together. Some years later he told me the time had come for me to adopt tight control. At the time, the major study (DCCT) on the use of tight control was still underway, but he had seen the pre-publication results and told me it was true: keeping your blood glucose results low will prevent vascular problems later in life. It sounded like a good bet, and so I began to learn the methods we then had for keeping blood glucose stable. The new miracles were home blood glucose testing (plugged into a wall outlet) and better long-acting insulin. 32

DiabetesVoice

Scott King Scott King is a medical entrepreneur and composer living in New Orleans, Louisiana, USA.

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Diabetes in society

Diabetes is my life partner François Gishoma

It is difficult to say what motivates me most to fight for a healthier life with type 1 diabetes because the motivation changed over the course of my illness. What has remained constant is the support of my family and my efforts to help other people living with diabetes. When I was diagnosed in 1995 after the terrible events that happened in Rwanda – the genocide against the Tutsi – it was very difficult to live with the conditions of diabetes. The entire country was mourning, with thousands of people killed and millions exiled. Infrastructures had been destroyed and the healthcare system was paralyzed without healthcare personnel and basic materials. While the survival of the Rwandan population was uncertain, living with diabetes during this period was almost impossible. During my struggle to live with the limited care available at that time, I realized how lucky I was to have access to some form of treatment while many others living with diabetes under the same conditions in Rwanda could not. I decided to fight back for better care not only for myself, but also for others living with diabetes. Two years after my diagnosis, I founded a diabetes association with the purpose of improving the lives of people living with diabetes and the lives of their families. During the last 17 years, I initiated and participated in various activities related to prevention, diabetes awareness, access to diabetes medication and advocacy for the rights of people with diabetes. In order to achieve improved care and access, I received a lot of support from many partners, whom I cannot thank enough. My greatest experience

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was the association with the International Diabetes Federation in 2003, which I believe was a major step in overcoming barriers in Rwanda related to national borders, and allowing Rwandans ways to contribute to the diabetes cause on a bigger scale with a louder voice. The reach of a Rwandan Diabetes Association had an expanded network. When diabetes is associated with other life difficulties, such as poverty, lack of knowledge on diabetes care, and malnutrition, the challenges for survival increase and a person living with diabetes becomes much more vulnerable. I believe, as a patient, that what makes the difference in diabetes self-management is a person’s attitude towards the disease. The attitude that saved me is the way I positively perceived my disease: I changed from seeing diabetes as my enemy to considering it my friend. Diabetes was like my life partner who stays with me no matter what, and this attitude helped me to thrive with diabetes. Even if in the past, I made a great effort to control diabetes, I unfortunately also made mistakes and developed different complications, which have led me into a very difficult situation. Today my motivation has grown even stronger. I strive to live better because my fight is not at its end. François Gishoma François Gishoma, founder of the Rwanda Diabetes Association, is 66 years, married and father to six adult children. Diagnosed with type 1 diabetes in 1996, he has lived in Paris since 2012 because of diabetes complications. Francois received a kidney transplant in October 2014.

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March 2015 • Volume 60 • Issue 1

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