Diabetes Voice

Global perspectives on diabetes

Volume 57 – April 2012

Young people find their voice New therapies for type 2 diabetes

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Contents

Diabetes Views

4

News in Brief

6

T H E G LOB A L C A M PA I G N 11

Setting the advocacy agenda in a new dawn for diabetes and NCDs

14

Ann Keeling

Katie Dain

Shout to the top! YOUNG LEADERS in diabetes find their VOICE

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Sana Ajmal and Alex Silverstein, on behalf of the Young Leaders in Diabetes

h e a lt h d e l i v e r y New treatments for type 2 diabetes – what is on the horizon?

John PH Wilding

Supporting research really works – my life after islet transplant therapy

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Jason Turner

CLINIC A L C A RE Needlestick injury prevention – puncturing the myths

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Kenneth Strauss

DI A BETES IN SOCIET Y Care, education, protection – the Associação Protectora dos Diabéticos de Portugal goes from strength to strength

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The World Diabetes Congress in Dubai: a personal view

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Insulin for Life – building capacity, saving lives

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Ninety years of insulin – Canada celebrates

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João Manuel Valente Nabais

Ron Raab

Marc Aras

Diabetes Voice is published quarterly and is freely available online at www.diabetesvoice.org.

This publication is also available in French and Spanish.

The Global Diabetes Forum: driving multi-sectoral partnerships for diabetes

Sir Michael Hirst

International Diabetes Federation Promoting diabetes care, prevention and a cure worldwide

Editor-in-Chief: Stephanie A Amiel, UK Managing Editor: Olivier Jacqmain, olivier@idf.org Editor: Tim Nolan, tim@idf.org Advisory group: Pablo Aschner (Colombia), Ruth Colagiuri (Australia), Patricia Fokumlah (Cameroon), Attila József (Hungary), Viswanathan Mohan (India).

Layout and printing: Luc Vandensteene, Ex Nihilo, Belgium, www.exnihilo.be All correspondence and advertising enquiries should be addressed to the Managing Editor: International Diabetes Federation, Chaussée de La Hulpe 166, 1170 Brussels, Belgium Phone: +32-2-5431626 – Fax: +32-2-5385114 – olivier@idf.org

© International Diabetes Federation, 2012 – 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 : Opening ceremony of the World Diabetes Congress in Dubai © International Diabetes Federation

April 2012 • Volume 57 • Issue 1

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Diabetes views

A world of hope and dreams

our efforts against health disparities and in favour of health equality in all communities.

We rounded off 2011 with the most successful World Diabetes Congress to date, when 15,000 people from all sectors of the diabetes community gathered in Dubai.

In the aftermath of that exciting and inspiring year, IDF is looking to the next stage of our journey for diabetes.

Our Federation is an umbrella organization of over 200 national diabetes associations. They are our Member Associations and represent our global constituency. They are the backbone of the worldwide diabetes community. They work hard and they work well. It is thanks to the evidence on diabetes provided by our Member Associations that the IDF Diabetes Atlas is a respected source of diabetes statistics.

Thanks to our Member Associations, World Diabetes Day, driven by the spirit and enthusiasm and superlative efforts of thousands of volunteers in over 160 countries, is celebrated throughout the world – and the voice of diabetes is heard by millions.

The commitment and industriousness of our Member Associations are an inspiration to me. An article in this issue of Diabetes Voice tells the story of the grandfather of them all, the Portuguese Diabetes Association. Originally named the Association for the Protection of Poor People with Diabetes, it remains focused on its mission of nearly 90 years – to improve the quality of life of people with diabetes in Portugal. The Associaçao has journeyed a long way from its origins as a home-grown charity organization that was set up to provide life-saving insulin to people who could not afford it. It has become the principal provider of diabetes education in Portugal and an important contributor to diabetes healthcare and health policy. Now a powerful nationwide advocate for diabetes, it is a model for us all.

As a global confederacy of diabetes associations, IDF advocates for all people living with diabetes, as we advocate for all those at risk. And we advocate alongside other groups who are fighting to achieve justice for health and wellbeing. The engines that power our Federation are fuelled by the social injustice that places huge numbers of people of all ages in danger from lifelong ill health. We are determined to tackle the injustices that keep essential insulin out of the reach of millions of people living in poor communities worldwide.

While we celebrate the great advances made in diabetes over the past century (see the story of insulin by Marc Aras in this issue) we have a mandate from our constituents to redouble

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September’s High-Level UN Meeting was just the beginning; there are no magic bullets for this epidemic. But IDF has a plan of action to transform commitments into action. Please go to the IDF website and follow the links to the Global Diabetes Plan 2011–2021. A link there will take you to a video presentation of the Plan made by IDF Vice-President, Ruth Colagiuri, at the Global Diabetes Symposium.

IDF is committed to building the capacity of our Member Associations in order to ensure that people with diabetes are involved at all levels of the response. We will continue to promote the human rights of people with diabetes, through active promotion of IDF’s Charter of Rights and Responsibilities and further reframing the debate to one predicated on rights and social injustice. Mobilizing a strong and united movement must become a priority for the global diabetes community.

Jean Claude Mbanya is IDF President for the period 2009 to 2012. He is Professor of endocrinology at the University of Yaounde, Cameroon, and Chief of the Endocrinology and Metabolic Diseases Unit at the Hospital Central in Yaounde.

April 2012 • Volume 57 • Issue 1

Diabetes views

We shall overcome!

Welcome to the first Diabetes Voice of 2012 – our first edition following the very successful IDF World Diabetes Congress in Dubai. Your editorial team were at the Congress, and President Elect Sir Michael Hirst reflects on it in these pages. As he points out, there is a lot of diabetes in the Middle East and North Africa and it is right to take the IDF World Diabetes Congress to such hot spots. I do, of course, refer to the high prevalence of diabetes with this term – although the weather was pretty good too! Raising the profile of diabetes in that region is important. The interest of the Emirates’ government was very visible throughout the event – and appreciated.

People came to Dubai from all over the globe, and the need for expertise from all nations was recognized, as Dubai’s remarkable conference facilities were made open to everyone who attended under the IDF umbrella. The Dubai authorities considered that no-one should be excluded from the meeting and appropriate arrangements were made through IDF. Truly, it can be said that the international community united against diabetes in Dubai last year.

Were the solutions to diabetes found in Dubai? Sadly no, not completely, but we did, I think, take another step or two towards our goal: uniting to present a solid front against the common enemy of diabetes. And we need to continue to develop and improve. This issue offers an update on some of the many battles that are under way in a plethora of fields around the world to face down diabetes and improve the life of those affected or at risk.

Much work needs to be done to capitalize on the political ground gained in the lead up to the successful UN High-Level Meeting in New York last year. Katie Dain provides insight into IDF’s ongoing global advocacy campaign. And we take an unusual look at the risks of injection devices and blood testing lancets – from the perspective of keeping the health professional safe and well.

Elsewhere in this edition, John Wilding looks at some potential new treatments for type 2 diabetes. Despite the noteworthy scientific progress made over recent decades, many people with the condition struggle to control their weight as well as their blood glucose – hypoglycaemia being a particular concern. New therapies, perhaps also including those described by Professor Wilding, are being developed that may go some way to closing the gaps in our provision of an effective pharmacological response to type 2 diabetes.

On page 37, Ron Raab, one of a number of tireless and consummate campaigner-fundraisers involved in Insulin for Life (see also News in Brief), reports on ongoing efforts

April 2012 • Volume 57 • Issue 1

to improve essential supplies to people with diabetes requiring insulin when such access is not always routine. Since it was set up in the 1980s, Insulin for Life has developed a worldwide network of affiliate groups and it continues to seek opportunities to expand operations. Please read Ron’s article and get in touch with him if you think you can help – his organization’s work saves lives.

Research has continued since the Congress, of course, and in News in Brief, we report more on the potential impact surgery could have on type 2 diabetes outcomes. This news is hot off the (electronic) press (the trials will be on paper in the New England Journal later this year) and adds to the evidence we considered after the publication of IDF’s statement on bariatric (sometimes called metabolic) surgery. There, we began to discuss the practicalities and cost-effectiveness of including surgery as an option for the global population of people with both obesity and type 2 diabetes. Other research has suggested that very low calorie diets also can reverse some type 2 diabetes – this area of research is moving fast and in addition to the comments made in this issue, Diabetes Voice will bring you more of this debate soon.

One of the features of the Dubai programme was the highprofile presence of young people concerned about diabetes from around the world. Sana Ajmal and Alex Silverstein report on the evolution of the Young Leaders in Diabetes programme, which was launched at last year’s Congress.

They are right to point out how important the young are to our survival as a species; we must not ignore their call to become engaged and integrated into the fight against diabetes.

Stephanie A Amiel is the RD Lawrence Professor of Diabetic Medicine at King's College London and Consultant physician to diabetes services at King's College Hospital, UK.

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News in brief

IDF BRIDGES project finds

young Sri Lankans at higher risk than previously thought Scientists at King's College London (UK)

The study, published in the journal PLoS

was found in nearly 20% of children aged

and the National Diabetes Centre (Sri

One, is part of a research programme aiming

between 10 and 14, and 15% of children aged

Lanka) have found evidence of a high num-

to develop methods to prevent diabetes in

between 15 and 19. Most worryingly, the

ber of risk factors for type 2 diabetes among

young people in Sri Lanka, where the dis-

prevalence of physical inactivity and central

the young urban population in Sri Lanka.

ease is having a major public health impact.

obesity was nearly 40% in girls aged under 16

The study is the first large-scale investiga-

The scientists suggest that urgent action is

years. The results also showed that physical

tion into diabetes risk among children and

required to raise awareness of diabetes and

inactivity was a lot higher among females in

young people in South Asia, and provides

obesity in developing countries and encour-

all age groups, with overall inactivity rising

further evidence that the region has become

age young people to make lifestyle changes

in both sexes with age.

another hotspot in the growing international

to reduce their risk.

diabetes epidemic.

The investigators had been expecting the levRecent research has shown that urban pop-

els of risk factors to be high but were surprised

ulations in South Asia are increasingly at

at how high they were. Such an increased

risk from developing type 2 diabetes. In Sri

prevalence in children had not been shown

Lanka, one in five adults has either diabetes

previously in Sri Lanka – or anywhere else

or pre-diabetes. However, no research had

in South Asia. The researchers emphasized

been carried out into risk-factors among

the importance of public health education

young people.

and awareness and stressed that these results have already contributed to the develop-

The DIABRISK-SL project is an international

ment of a National NCD Strategy to combat

collaboration between scientists in Sri Lanka

type 2 diabetes.

and the UK at the School of Medicine at King's College London. The team surveyed

The study was funded by a BRIDGES grant

22,507 people aged between 10 and 40 years

from IDF and the Diabetes Association of

from cities in Sri Lanka to check for various

Sri Lanka. BRIDGES is an IDF programme

early risk factors for type 2 diabetes – such

supported by an educational grant from

as high body mass index (BMI), raised

Lilly Diabetes.

waist circumference and high levels of physical inactivity. They also checked

Professor Jean Claude Mbanya, President of

for family history of type 2 diabetes.

the International Diabetes Federation spoke of his hope that “the DIABRISK-SL project

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The survey revealed that 23%

in Sri Lanka will lead to effective and cost-

(5,163 people) had two or more

effective interventions that work in the real

risk factors for diabetes, with two

world. This is a golden opportunity to make

or more risk factors found in

a very deep and very positive long-term

24% of children aged between

impact on individuals, families and entire

10 and 14 years. Raised BMI

communities in Sri Lanka.”

April 2012 • Volume 57 • Issue 1

News in brief

Heidi Schmidt-Schmiedebach at work in the Insulin zum Leben office.

Insulin for Life acknowledged in major award The manager of Insulin zum Leben (Insulin for Life, Germany), Heidi Schmidt-Schmiedebach, recently received the first Thomas Fuchsberger Award in Berlin, handed over by Joachim Fuchsberger. Joachim ‘Blacky’ Fuchsberger is a famous German actor and entertainer and is well known in Germany for his role in the crime thrillers of Edgar Wallace.

His son Thomas Fuchsberger (1957–2010) was diagnosed with type 1 diabetes in 1977 and was a high profile and much travelled diabetes advocate for many years. In October 2010, Thomas tragically drowned after suffering hypoglycaemia.

In his memory, the German Diabetes Association created the Thomas Fuchsberger Award to recognize the work of a volunteer engaged in education and assistance for people

April 2012 • Volume 57 • Issue 1

with diabetes. Heidi Schmidt-Schmiedebach is the first winner of the award.

Diagnosed with type 1 diabetes in 1979, Heidi was the founder of the first self-help group for diabetes in her hometown and currently is the chair of six such groups.

Since 2000, she has been the manager of Insulin zum Leben, which collects and donates life-saving insulin, test strips and other diabetes supplies to countries in need. In 2011, Heidi Schmidt-Schmiedebach sent an estimated EUR 450,000 of donated supplies.

The article by Ron Raab on page 37 of this issue looks at the work of Insulin for Life and its affiliates around the world.

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News in brief

n e ll a h c e id w d rl o w a – y t besi ia D

ge

.

met addressed the plenary session

IDF Honorary President Paul Zim

e Four major research projects wer launched recently at the European , Hea lth Com mis sion mee ting DIABESITY – a Worldwide Challenge, in which was held in February this year Brussels (Belgium). A total of EUR 16 , million is being invested in the projects EPI-MIGRANT, MEDIGENE, RODAM and GIFTS, which bring together 50 l leading European and internationa research organizations.

Each project investigates how genetic, of environmental and lifestyle factors different segments of the world population jointly influence the emergence and gravity of diabetes. One of the requirements for EU support was that the four e projects work in collaboration and shar w allo will their data and results. This the researchers to go faster and further in the discover y of new ways to curb the epidemics of diabetes and obesity.

lth/e Visit http://ec.europa.eu/research/hea

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The two-day event brought together some 200 leading scientists, funding er agencies, policy-makers and oth key players from around the world. , It presented the four cluster projects of and aimed to determine the state arch rese play of diabetes and obesity in specific populations worldwide, and explored opportunities for greater international cooperation and new research partnerships.

.

vents-12_en.html for more information

April 2012 • Volume 57 • Issue 1

News in brief

Obesity surgery – protection for the heart

Add sugar to taste – and for obesity and diabetes A group of international scientists recently published a study that provides new insights into the role of fructose in the processes leading to diabetes (Proc Natl Acad Sci 2012 Feb 27 [Epub ahead of print]). In this animal study, scientists found that fructose can be metabolized by an enzyme that exists in two forms: one appears to be responsible for the action of fructose in producing fatty liver, obesity and insensitivity to insulin; the other may have protective qualities in response to sugar.

Previous research has suggested that fructose intake in added sugars, such as sucrose and high-fructose corn syrup, is strongly linked to the dramatic increases in obesity and non-alcoholic fatty liver disease. According to the researchers, the identification of the contrasting roles for the two enzymes that are involved in fructose metabolism was surprising and could be important in understanding why some people may be more sensitive to the metabolic effects of fructose than others.

April 2012 • Volume 57 • Issue 1

An article in the 2011 special issue of Diabetes Voice, Emerging Therapies, reported on the work of IDF’s Taskforce on Epidemiology and Prevention of Diabetes to develop a framework in which bariatric surgery can be assessed in the context of type 2 diabetes (Diabetes Voice 2011; SI1: 32-5). In the same year, IDF released a position paper on the intervention.

Recent findings from Scandinavia add to the bank of evidence that demonstrates the protective effects of this kind of surgery (JAMA 2012; 1: 56-65).

Swedish researchers found that obese people who undergo bariatric surgery have a 30% lower risk of suffering a heart attack or stroke.

Swedish Obese Subjects (SOS) is one of the world’s largest studies of obesity and its health effects. The results produced as part of the study have led to an increase in bariatric surgery in Sweden from a few hundred operations per year in 1987 to around 10,000 in 2011. The study authors

believe that their findings could lead to changes in the selection criteria for surgery. Currently, the degree of obesity is the key factor when deciding whether a person is offered surgery.

The health benefits seen in Sweden were independent of the degree of a person’s obesity. The researchers noted that if the aim is to select people who will benefit most from surgery, priority should instead be given to those with various metabolic disorders, such as high insulin or high blood glucose. With two very recently published trials showing greater remission of type 2 diabetes in obese people after bariatric surgery than with apparently optimized medical care (N Engl J Med 2012 Mar 26 Epub 10.1056/NEJMoa1200225 and N Engl J Med 2012 Mar 26 Epub 10.1056/ NEJMoa1200111), and a mechanistic study showing the benefits of very low calorie diet (Diabetologia 2011; 54: 2506-14), the place for such opportunities for intervening in the diabesity epidemic needs defining.

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News in brief

Diabetes and NCDs killing older people in Latin America, India and China

New hope for new type 2 diabetes meds

According to recently published research, diabetes, stroke and heart disease are the leading causes of death in people over 65 in low- and middle-income countries (PLOS Med 2012; 9: e1001170). Although deaths of people over 65 represent more than a third of all mortality in developing countries, little research has focused on older people. Researchers in London (UK) also found that education and social protection are as important in prolonging people's lives as economic development.

In his article in this issue of

to improve the secretion of in-

Diabetes Voice, John Wilding de-

sulin in a glucose-dependant

scribes efforts to develop treat-

manner – which means it has

ments for type 2 diabetes that

no impact on insulin secretion

might help overcome some of the

when glucose levels are normal

key problems with these therapies,

and, therefore, has the potential

developing countries.

particularly weight gain and hy-

to improve the control of blood

poglycaemia. Recently published

glucose levels without the risk

In 2005, deaths of people aged 60 years and over accounted

results of a phase II randomized

of hypoglycaemia.

According to the 10/66 Dementia Research Group at the Institute of Psychiatry at King's College London, the concept of 'premature mortality' applied in the current chronic disease agenda focus on reducing mortality among working-age adults is essentially ageist. Their findings highlight the lack of information about the end of life among older people in

for 61% of all deaths in middle-income countries and 33% in

875, a new treatment for type 2

A team of US researchers ran-

the causes and determinants of these deaths.

diabetes, can improve blood gluc

domly assigned 426 people

ose control while lowering the risk

with type 2 diabetes to one of

Between 2003 and 2005, researchers surveyed 12,373 people

of hypoglycaemia (Lancet 2012

five doses of either TAK-875, a

Feb 24 [Epub ahead of print]).

placebo, or a standard diabetes

low-income countries. Yet there has been little research into

aged 65 and over in 10 urban and rural sites in Cuba, the Dominican Republic, Venezuela, Peru, Mexico, China and

treatment (glimepiride). All of As Professor Wilding explains

the participants had failed to

five-year follow-up period.

in his article in this issue of

achieve adequate glucose con-

Diabetes Voice, there are "sen-

trol through diet, exercise or met-

Chronic diseases, particularly diabetes, stroke and heart disease,

sor" molecules that recognize the

formin treatment. The primary

presence of food in the intestines

outcome was defined as a change

and control the release of hor-

in HbA1c from the start of the

mones that tell the pancreas and

study. At 12 weeks, in comparison

the brain that food is on its way.

with placebo, all doses of TAK-

One of these is known as GPR

875 achieved a substantial drop

in reducing mortality risk.

(G-Protein-coupled Receptor)

in HbA1c levels that was compa-

40. TAK-875 is the first GPR40

rable to the reduction achieved

Most deaths occurred at home, with a particularly high pro-

agonist to reach the late stages

in study participants who had

of clinical development.

received glimepiride. (See John

India, documenting more than 2,000 deaths over a three- to

were the leading causes of death in all sites other than rural Peru. Overall, stroke was the most common cause of death (21.4%), ranking first in all sites other than rural Peru and rural Mexico. The authors found that education, more than occupational status and wealth in later life, had a strong effect

portion in rural China (91%), India (86%), and rural Mexico (65%). Other than in India, most people received medical care but this was usually at home rather than in a hospital or clinic.

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trial demonstrate that TAK-

DiabetesVoice

Wilding’s report on page 19 for TAK-875 is an oral medica-

more on the potential new thera-

tion that has been developed

pies for type 2 diabetes.)

April 2012 • Volume 57 • Issue 1

News in brief

The Global Diabetes Forum: driving multisectoral partnerships for diabetes Ann Keeling

Just three months after the UN High-Level Meeting on NonCommunicable Diseases (NCDs) in New York and the adoption of the first ever UN Political Declaration on NCDs, IDF convened over 15,000 of the diabetes and global health community at the World Diabetes Congress in Dubai. In order to maximize this sequence of events, IDF held a unique event immediately prior to the official opening of the Congress. The Global Diabetes Forum brought together a highprofile audience to build on the political momentum from New York, explore the implications of multi-sectoral and whole-of-society approaches that lie at the heart of the Political Declaration, and begin to define the partnerships required to drive change for the 366 million people with diabetes worldwide.

April 2012 • Volume 57 • Issue 1

IDF’s advocacy in the lead up to the UN Summit was founded on the message that diabetes is everyone’s business.1 The causes of this disease are diverse and complex, driven by global patterns of urbanization, globalization and economic development, and its impact is felt by all of society. For this reason, no single actor or sector can solve the diabetes epidemic alone; the response must include all sectors of society and be coordinated to have impact.

These messages are strongly stated in the Political Declaration, with an entire section dedicated to whole-of-government and a whole-of-society efforts, and commitments to develop multi-sectoral national NCD plans and collaborative partnerships that go beyond the health sector.2 This has provided renewed impetus to define better what these somewhat nebulous phrases mean (‘multisectoral’ and ‘whole-of-society’) and how these partnerships need to work

in practice in order to ensure that they add value and harness the strengths of their different constituents.

The Global Diabetes Forum explored the role and expertise of the private sector in providing long-term solutions for the global diabetes epidemic.

IDF’s Global Diabetes Forum brought together representatives from the UN, governments, the private sector and civil society to take the Political Declaration a step further in the practical application of effective partnerships for diabetes. The main focus of the Forum was to discuss the shared priorities of the three pillars of what IDF has coined ‘Triple P’ Partnerships – public, private and the people – and explore in depth

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The global campaign

the role and expertise of one particular constituent of these partnerships – the private sector.

IDF has always maintained that engaging with the private sector in an open, transparent and positive way is central to providing long-term solutions for the global diabetes epidemic. This sentiment is endorsed in the UN Summit Declaration with a set of commitments directly aimed at the private sector. At the most basic level, as employers, the private sector has a clear incentive to invest in health; and as producers, marketers and innovators, the private sector has unique capacity and expertise that can improve health outcomes for people with diabetes and prevent the development of future cases.

Discussions during the Global Diabetes Forum were centred around four themes: working towards better health; the business of better health; investing

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in better health; and harnessing privatesector expertise. Four eminent thought leaders, each from a different sector, led each theme. Below is a summary of messages that emerged during the Forum, all of which are outlined in more detail in the forthcoming Dubai Blueprint (to be published soon).

Not ‘if ’ but ‘how’ Forum participants were in consensus that we should no longer be discussing whether or not the private sector has a role to play in tackling diabetes and related NCDs, but how it should be involved. Within certain parameters and safeguards in place, the role of the private sector in delivering healthcare and insurance plans, producing essential medicines and technologies, promoting healthy working environments for employees, and reformulating food and beverage products to reduce salt, fat and eliminate trans-fats are integral to reducing the burden of diabetes

worldwide. Discussions focused on how to maximize the expertise and skills of the private sector.

The World Economic Forum rated NCDs as one of the greatest threats to the global economy, second only to asset price collapse.

The business case for private-sector action Discussion on the business case for private-sector action was centre stage at the Global Diabetes Forum. Participants shared views on the most compelling case to prompt action in all sectors, as well as applying pressure on the more ‘health-polluting’ businesses to come into line. It was clear that all sectors have an incentive and a responsibility to invest in health, for both humanitarian and economic reasons. The cost of

April 2012 • Volume 57 • Issue 1

the global campaign

inaction on NCDs is staggering, estimated to lead to a cumulative output loss of USD 47 trillion in over the next 20 years.3 For this reason, the World Economic Forum recently rated diabetes and NCDs as one of the greatest threats to the global economy, second only to asset price collapse.4 As employers, the private sector has a particular stake in health. Diabetes and NCDs are increasingly hitting people in their most productive years, causing absenteeism, lost productivity and high healthcare costs across the life course.

generate a competitive advantage to private sectors that are able to get ahead of the game in order to deliver healthier food and the means to a healthier lifestyle. At the same time, while societal needs in low- and middle-income countries are greater, these represent underserved yet viable and profitable markets.

Delivering diabetes care to the poorest populations offers a new frontier for innovation, particularly in redesigning products and distribution channels, and an opportunity for substantial productivity for private and public interests.

Shifting the discourse to shared values The UN Summit process catalyzed a healthy dialogue on private-sector engagement in global health, with concerns around conflicts of interest coming to the fore. Similar concerns surfaced recently with respect to a Global Fund grant and WHO reforms.5 The Global Diabetes Forum tackled these issues head-on in a neutral space, with participants voicing the need to shift the dialogue from negative and antagonistic conflicts of interest to more constructive commonality of interests or shared values. Many participants voiced the need for the private sector to go beyond corporate social responsibility, and instead embed values and practices that enhance the competitiveness of a company while simultaneously promoting health in the communities in which they operate.

Thinking outside the box Along with the conventional role of the private sector in health, and diabetes specifically, Forum participants explored the less obvious private-sector skills and expertise that need to be harnessed to have a greater impact on health. Marshalling the financial resources of the private sector for diabetes remains a major priority for IDF, particularly in the absence of a shift in funding priorities of multilateral or bilateral agencies since the Summit.

Opportunities for the next wave of innovation and productivity A key theme of the Global Diabetes Forum was innovation. Arguably the greatest unmet needs in the global economy are better health, improved nutrition, help for the ageing population and less environmental damage. In high-income countries, demand for products and services that meet these societal needs is growing rapidly, and innovation can

But beyond the immediate priorities of money and medical products, the private sector’s comparative advantage relative to the public sector in management, planning, information infrastructure, logistics and distribution channels represents relatively untapped expertise in the global response to diabetes. Forum participants shared many of the lessons that can be learnt from other health issues, such as HIV/AIDS,

April 2012 • Volume 57 • Issue 1

Lessons from other health issues, such as HIV/AIDS, are testament to the transformative potential of thinking outside the box.

where public-private partnerships are more advanced and are testament to the transformative potential of thinking outside the box.

The Global Diabetes Forum was a significant step forward in defining practical next steps for the global diabetes community after the UN Summit, as well as advancing the dialogue on multisectoral partnerships that must be the cornerstone of the global response.

Only by working together in partnerships that span every level of government and the public and private sectors will we see sustainable change that will benefit current and future generations.

Significantly, Forum participants and the Dubai Blueprint began to establish the rules and shape of these multi-sectoral partnerships that will drive change in an effective, transparent, equitable and accountable way. This is an exciting time for the global diabetes and NCD community. Together we can make a world of difference for people with diabetes.

Ann Keeling Ann Keeling is the CEO of IDF.

References 1 I nternational Diabetes Federation. A Call to Action on Diabetes. IDF. Brussels, 2010.

2 A /66/L.1 Political Declaration of the High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases (2011).

3 W orld Economic Forum. The Global Economic Burden of Non-communicable Diseases. WDF. Geneva, 2011.

4 W orld Economic Forum. Global Risks 2010 – A Global Risk Network Report. Geneva, 2010.

5 M atzopoulos R, Parry CDH, Corrigall J, et al. Global Fund Collusion with Liquor Giant is a Clear Conflict of Interest. Bull World Health Organ 2012; 90: 67-69.

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The global campaign

Setting the advocacy agenda in a new dawn for diabetes and NCDs Katie Dain

2011 was undoubtedly a landmark year for diabetes and global health more broadly. The UN High-Level Meeting on Non-communicable Diseases (NCDs) in September changed the global health and development landscape forever.

Diabetes and NCDs finally reached prominence when 193 UN Member States adopted the Political Declaration on NCDs and agreed to a set of commitments that has the potential to accelerate coordinated global progress that has been lacking for so long. As one of the earliest voices to call for the Summit and an instrumental player during preparations, the International Diabetes Federation is proud to have been at the heart of this sea change.

Now it is time to look forward, and prepare to take action.

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DiabetesVoice

In the aftermath of an exciting and inspiring year, IDF is looking to the next stage of our journey for diabetes.

We have always acknowledged that the High-Level Meeting was just the beginning. We conceived the Summit to inaugurate change for diabetes, but we know that there are no magic bullets for this epidemic. We need to have a long-term vision, and remain determined to create change for the hundreds of millions of people with diabetes. Looking to 2012 and beyond, IDF has a clear roadmap of action to keep diabetes on the global agenda and translate commitments into action on the ground.

IDF is determined to keep the pressure on at the global level. Our advocacy will ensure that major actors are held accountable and the Political Declaration is not merely rhetoric. 2012 holds immediate priorities for IDF; we must ensure diabetes perspectives are included in the WHO-led process of developing global targets and a monitoring framework for NCDs, and ensure that the UN Secretary General proposes a global NCD partnership that will coordinate follow-up action and include the meaningful involvement of NGOs like IDF and our sister

federations in the NCD Alliance. These post-Summit processes are crucial, as they will lay the foundations for future action and drive leadership.

In our sights – Millennium Development Goals 2015 In 2015 in our sights. We have always given our support to the UN's Millennium Development Goals (MDGs), , but the absence of diabetes and NCDs has been a major obstacle to mobilizing leadership and resources. IDF and the NCD Alliance are launching a campaign in 2012 to ensure this next big political opportunity after the UN Summit firmly integrates diabetes into the post-2015 development framework, keeping in mind major milestones like the UN Conference on Sustainable Development (Rio+20) in 2012 and the MDG High-Level Review in 2013.

Our message to policy makers is very simple: you cannot talk about economic and human development without talking about diabetes and NCDs. 80% of diabetes cases now occur in low- and middle-income countries, and the interconnectedness of this disease with other development issues, including infectious diseases, maternal health and

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the global campaign

climate change, means it is undermining development gains made to date. For the post-2015 development framework to safeguard progress made on the MDGs and drive sustainable and equitable development, health must continue be at the heart of the framework. But the definition of health and approach to health must be redefined in order to reflect the current health landscape and priorities of lowand middle-income countries in 2015.

Unresolved issues There remains unfinished business for civil society. Although it recognized that resources are not "commensurate with the magnitude of the problem", the UN Political Declaration did not solve the economic challenges facing the diabetes and NCD epidemic. The agencies that determine development funding, including major bilateral donors, the World Bank and the IMF, remain reluctant to allocate resources for diabetes and NCDs. The degree of incoherence in global health funding is evident by the fact that NCDs, diseases which represent 60% of the global burden, receive less than 3% of the USD 22 billion Official Development Assistance spent on health. Looking forward to 2012, IDF and the NCD Alliance will combat resourcing failures by exploring innovative funding mechanisms for NCDs and targeting bilateral and multilateral donors with a concerted campaign to readjust funding priorities.

A further unfinished agenda is the issue of access to essential diabetes medicines and technologies. We must ensure that the right to treatment and care is realized.

In New York last September, governments from around the world committed to increase accessibility, affordability and availability of life saving medicines to people with diabetes and NCDs. But we have a long way to go before we see in our countries, in our own communities,

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universal access to essential diabetes care.

This is our goal. And we have the means to achieve it.

Effective and affordable supplies for diabetes exist. Insulin is off patent and relatively cheap but remains widely out of reach in the developing world; 100 million people lack access to the diabetes care and supplies they need to survive. With a collective voice we must clamour against these human rights violations and force political leaders to strengthen supply systems, develop innovative trade policies and commit to ambitious targets to scale up access to diabetes treatment and care.

Right now, millions of people with diabetes still lack access to proper care and supplies.

Where do our responsibilities lie now?

Critically, the Summit marked a transition in ownership for diabetes and NCDs. The Political Declaration means we have now passed the baton to governments for the diabetes epidemic; they have committed to implementing multi-sectoral national NCD plans, promoting a wholeof-government approach across sectors and strengthening national health systems. The emphasis on national action in the Declaration means that accountability has become crucial. It is now up to governments to deliver change and up to us, the global diabetes community, to ensure commitments are fulfilled.

The global watchdog Civil society has an important role to play in measuring country compliance with the UN Summit. This could take two forms: contributing to national progress reviews, which will feed into the

Secretary General’s High Level Review in 2014; or independently measuring government progress by shadow reporting.

These are significant tasks – shadow reporting, the use of scorecards and evaluation can be labour-intensive. However, IDF will lead its Member Associations as a global watchdog to ensure that Political Declaration commitments are translated into improved prevention and care for people with diabetes on the ground.

IDF is dedicated to growing a people’s mass movement for diabetes and NCDs. The HIV/AIDS community has demonstrated, from the extensive involvement of people living with HIV/AIDS in the global response, that it is people who drive change. In order to combat diabetes effectively, it is critical that people with diabetes are involved in the development of NCD programmes and policies, act as a ‘citizen’s protection force’ to monitor their governments and confront their politicians with vocal frustration at the slow pace of change.

IDF is committed to building the capacity of our Member Associations and regional offices in order to ensure that people with diabetes are involved at all levels of the response. We will continue to promote the human rights of people with diabetes through active promotion of IDF’s Charter of Rights and Responsibilities and further reframing the debate to one predicated on rights and social injustice.

Mobilizing a strong and united movement must become a priority for the global diabetes community.

Katie Dain Katie Dain is the Advocacy and Programme Development Co-ordinator of IDF.

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The global campaign

Shout to the top! in diabetes find Sana Ajmal and Alex Silverstein, on behalf of the Young Leaders in Diabetes

Over 50% of the world’s population is under 30. This group contribute around 5% to the global diabetes population – and their numbers are growing fast. Yet the needs of young people with diabetes often go unnoticed. Older generations overlook youth at our peril. In the words of Kofi Annan, “a society that cuts itself off from its youth severs its lifeline." Given the corrosive effects of inadequately managed diabetes on societies and economies worldwide, the need for diabetes advocacy involving an engaged and informed youth section has never been more important. The International Diabetes Federation has recognized that young people generally and youth activists in particular have a crucial role to play within the Federation and its Member Associations.

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The vision and determination of IDF volunteers, including IDF VicePresident Debbie Jones, were the driving force behind the launch of the IDF Young Leaders initiative. With the support of a number of sponsors and Federation staff, IDF brought together a group of passionate young people from around the world at the recent World Diabetes Congress in Dubai.

A supporting faculty from Brazil, Bermuda, Belgium, Canada, Mexico, Switzerland, the UK and the USA included organizers of diabetes camps and youth leadership groups. They developed and facilitated a programme in Dubai that served as a springboard to launch the Young Leaders into the complex and turbulent world of international diabetes advocacy. Guest speakers brought decades of involvement in diabetes at the highest levels, as well as inspirational personal achievements, to a series of master classes in diabetes leadership.

IDF Member Associations from all seven IDF Regions had nominated the Young Leaders, the majority of whom are living with diabetes. A special feature of this initiative, perhaps unique among current diabetes youth advocacy programmes, is that any young person with a strong belief in and support for the cause is eligible to take up his or her place in the programme.

Sustainability is one of the overarching principles of the Young Leaders initiative.

In order to qualify to be able to attend the Congress, the Young Leaders had submitted a project application outlining ideas and strategies to improve youth engagement within their host country, and providing the name of a mentor to support the delivery that project in the months and years following the Dubai meeting. This is crucial to the programme’s sustainability, which

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YOUNG LEADERS their VOICE is an overarching principle of the Young Leaders initiative. Importantly also, each of the Young Leaders raised her or his own funds for travel and accommodation in Dubai.

Uniting nations – laying foundations The 69 Young Leaders from 48 countries met in Dubai for the first time. Already active in IDF Member Associations, they represent a broad range of professions (from lawyers, athletes and architects to musicians, teachers and students), and come from a constellation of cultures, faiths and political ideologies. Although 40-odd languages represented, there was only one that mattered: the language of diabetes. Indeed all that socio-cultural and linguistic diversity was no barrier to their collective commitment to improving the lives of young people affected by Diabetes worldwide and this became the vision statement of the IDF Young Leaders.

The nitty-gritty of governance also was addressed in Dubai. The Young Leaders

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Council was formed and its first officers elected: A lex Silverstein from the UK as President Keegan Hall from South Africa as President Elect Sana Ajmal from Pakistan as Vice President.

Diversity is no barrier to a collective commitment to improving the lives of young people affected

by Diabetes worldwide Additionally as a result of that electoral process, two members from each of the seven regions now serve on the Council. They represent the entire constituency of the Young Leaders – the real force behind the movement. Their stated mission: The Young Leaders will raise awareness of diabetes by being a powerful voice for

prevention, education, access to quality care, improved quality of life, and the end of discrimination worldwide.

Living and working as a group during the Dubai event brought into stark relief some burning global issues relating to the provision of care and access to essential medications: some of the young leaders brought with them ample supplies of medication that they had received free of charge; others brought a single syringe for the whole week. Some had enough test strips to check their blood glucose levels only once every couple of weeks – if at all.

The outrage was palpable among the international group of activists. In many places, it is ‘cheaper’ to leave a child with diabetes to die in order that her

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The global campaign

Dubai 2011 – the Young Leaders' introduction to the diabetes community

family might survive. And there are places where discrimination against people with diabetes is governmental policy.

It is the firm conviction of the Young Leaders that a united approach can overcome the sense of powerlessness that all too easily can overwhelm the lone individual striving to face down these injustices. Respect, admiration and understanding unite the Leaders. This initiative offers hope and already has empowered the group to support each of its members wherever the need might arise.

Some key objectives Deliver projects to improve the lives of young people affected by diabetes worldwide Each of the Young Leaders is working with their Member Association to implement the proposed projects. These include forming youth groups, raising awareness and even the development of a multi-lingual travel dictionary for people with diabetes – watch this space!

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Continue to increase the number and spread worldwide of future Young Leaders Many Young Leaders were unable to take part in the Dubai programme because they or their Member Association could not afford it. The Young Leaders will establish twinning projects between Member Associations in order to optimize fundraising for all potential attendees, while also reinforcing the relationships between Member Associations and Young Leaders whichever their socioeconomic context.

Encourage knowledge building by sharing of experiences and best practices The construction of a strong and active online forum is ongoing; social media and a bespoke website (www.idf.org/youngleaders-programme) are connecting young people with diabetes worldwide.

It is hoped that by harnessing the social media and online communications skills available among the Young Leaders they will be able to help IDF to enhance and

broaden its reach globally at low cost – potentially a massive return on a very small investment.

The future of diabetes today Today’s worldwide network of inspirational young leaders will form the fabric of the global diabetes community at the very highest levels tomorrow. The foundations that are currently under constructed will unite people with diabetes, IDF, its Member Associations, healthcare professionals and the public worldwide, creating a powerful and unified voice for diabetes that will ring out for generations to come.

Sana Ajmal and Alex Silverstein, on behalf of the Young Leaders in Diabetes Sana Ajmal is Vice President of the IDF Young Leaders in Diabetes.

Alex Silverstein is President of the IDF Young Leaders in Diabetes.

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health delivery

New treatments for type 2 diabetes – what is on the horizon?

John PH Wilding

Worldwide, more than half the people with type 2 diabetes have blood glucose concentrations that are too high, leading to a greater risk of complications. This is partly because many existing treatments have limitations. Metformin, for example, usually the first drug recommended if lifestyle changes are not sufficient to control blood glucose, may cause nausea and stomach upset, and cannot be given to people with kidney failure; sulphonylureas may cause weight gain and hypoglycaemia; and pioglitazone has been associated with weight gain, fluid retention, heart failure, bone fractures and bladder cancer.

New drugs have become available in the last few years include DPP-4 inhibitors, such as sitagliptin, saxagliptin and linagliptin. The injectable GLP-1 analogues, such as exenatide and liraglutide, are a significant advance as they have a lower risk of hypoglycaemia and weight gain. However, blood glucose concentrations tend to rise over time in type 2 diabetes, despite drug therapies, so people need additional treatments the longer they have had the condition – many eventually needing insulin.

Therefore, new treatments that might help to overcome some of these problems, particularly weight gain and hypoglycaemia, both of which also are a problem with insulin treatment and loss of insulin secretion over time, are desirable. Here, John Wilding reviews some of the latest research into new medicines for type 2 diabetes, focusing on drugs that might become available in the next few years.

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Activators of the gut and pancreas– G-protein coupled-receptors Normal control of insulin release and food intake When we eat, the intestines produce a cocktail of hormones that travel in the blood to the pancreas, giving advanced warning that food is on its way.

Normally, this stimulates the release of insulin to ensure that sugar, fats and proteins are correctly stored and used by the body. Some of the hormones (of which the most familiar is GLP-1, manipulation of which is already used to treat diabetes) also travel to the brain, where they help transmit the message that we are full and that it is time to stop eating. Recent research has found some of the ‘sensor’ molecules in the intestines that recognize when the intestines contain food and control the release of those hormones. Two of these sensor molecules are known as G-protein-coupled receptor (GPR) 40 and GPR 119.

Potential to lower glucose and reduce weight Interestingly, these receptors are also found in the pancreas, where they are

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New therapies might be particularly helpful for people struggling to control their weight.

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thought to be involved in the control of insulin release. So drugs that activate this system might assist the pancreas to produce more insulin in response to food (helping to keep blood glucose down after meals), while at the same time allowing people to feel fuller sooner after a meal – which might help to control body weight.

Drugs in development A number of companies have developed drugs that work by activating either GPR 40 or GPR 119, and some of these are now starting clinical trials in people with diabetes. It will be a few years before we know for sure whether this interesting new idea really is effective to help treat diabetes and perhaps a little longer before such treatments become available, assuming the preliminary studies show that this approach works in people with diabetes.

Sodium glucose transporter 2 inhibitors The normal role of the kidney in controlling blood glucose Glucose is often found in the urine in people with diabetes - especially if their blood glucose is high. Most people without diabetes do not have glucose in their urine. This is because the kidney has a very efficient mechanism to catch all the glucose very early in the process of urine formation and pump it back into the bloodstream so that none of this precious body fuel is wasted. If blood glucose is high (above approximately 11 mmol/l, as can often be the case in diabetes), the capacity of this pumping system is exceeded and some glucose remains in the urine. The main pump returning glucose to the circulation from the urine is called the sodium glucose co-transporter 2 (SGLT2). A similar pump, called SGLT1, transports any leftover glucose. Importantly, SGLT2 is only found in the kidney, whereas SGLT1 is also found in the intestines – where it is responsible for helping absorb sugars from the diet.

A prototype drug from the apple tree It has been known for more than 100 years that a chemical called phlorizin, originally purified from the bark of the apple tree, could cause glucose to appear in the urine (glucosuria).

In the 1970s, it was shown that phlorizin could lower blood glucose in rats and mice with diabetes. However, it is not practical to use phlorizin to treat people with diabetes for a number of reasons: it has a weak effect, blocks SGLT1 in the intestines (causing severe diarrhoea) and has to be given by injection. Although the structure of phlorizin is similar to that of glucose, phlorizin jams up the glucose pumping mechanism. Pharmaceutical companies have now developed

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drugs that, while they are similar to phlorizin in structure, are selective: they only block SGLT2 in the kidney and can be given as tablets once a day.

Clinical data on SGLT2 inhibitors in development Several SGLT2 inhibitors are being tested in people with diabetes. All of them provoke the loss in the urine of about 50 g of glucose each day (about the same amount as in a standard can of fizzy drink) and have been shown to lower blood glucose (and HbA1c, which indicates longer term glucose control). The SGLT2 inhibitors seem to work irrespective of whatever other therapy the person is taking, demonstrating their effectiveness when used as the only drug treatment in combination with metformin, sulfonylureas, pioglitazone or insulin.

Because some glucose is lost in the urine, the SGLT2 inhibitors also help a little with weight – people lose about 2.5 kg on average over 6 months. The drugs also appear slightly to lower blood pressure (probably because some sodium is lost with the glucose). The main side effects relate to an excess of glucose in the urine – people might expect to empty their bladder once more per day than usual. There is also a slightly higher risk of developing yeast infections (thrush) and water infections (cystitis) but these tend to be mild and respond to standard treatments. The risk of hypoglycaemia is low because SGLT2 inhibitors do not provoke insulin to be secreted from the pancreas.

Who might benefit?

These drugs are not yet available for healthcare professionals to prescribe. However, they might be particularly helpful for people who are struggling to control their weight and some people who are already on insulin, where they have been shown to improve blood glucose control without having to increase the insulin dose.

John PH Wilding John PH Wilding is Professor of Medicine and Honorary Consultant Physician at the University of Liverpool, UK. He is Head of the Department of Obesity and Endocrinology at the Clinical Sciences Centre, University Hospital Aintree, Liverpool, UK (J.P.H.Wilding@liverpool.ac.uk)

Further reading air S, Wilding JPH. Sodium glucose co-transporter 2 inhibitors as a new N treatment for diabetes mellitus. J Clin Endocrinol Metab 2010; 95: 34-42.

T elvekar VN, HS Kundaikar. GPR40 Carboxylic Acid Receptor Family and Diabetes: A New Drug Target. Curr Drug Targets 2008; 9: 899-910.

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Supporting research really works – my life after islet transplant therapy Jason Turner

In his own words, Jason Turner learned the hard way that he was not indestructible. Born in Edmonton, he lived a fairly typical Canadian middle-class life – a father working outside the home and a mother working inside, a brother and a sister. As happens in so many families, his diagnosis of type 1 diabetes at 11 years of age sent shockwaves through that carefree existence that would continue throughout his life. And as happens to so many people with diabetes, the complexities of managing his condition through adolescence and into adulthood for long periods got the better of him. Complications developed early and Jason fell into a very highrisk group. He then found himself in a position to undergo not one but two islet transplantations that have once more transformed his existence – this time with very different results. In this frank and brave account, he tells his fascinating story.

I was diagnosed with type 1 diabetes on 3 March 1983, when I was 11 years old. I adapted to my new reality in a way that perhaps only children can.

Of course, I now understand that my diagnosis and even my symptoms were much harder on my parents. Looking back, it seems that diabetes was not so common in those days.

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My diabetes and me – bad boys come together My diabetes was like a numbers game: if my blood glucose was high or if it was too low, I was ‘a bad boy’ – when all I really wanted was to be a good kid. So I applied my ‘creative math skills’. For example, if my glucose reading looked high to me, I would divide by two or three (or four!) in

order to achieve an ‘acceptable’ number.

Those creative calculations led to some poor behaviour that would continue into my twenties. I characterize it now as having had the misfortune to be young and male: like young men everywhere around the world, I thought I was invincible. As far as I was concerned, I could feel when my sugar was high or low and I made adjustments to my insulin based on that, without testing.

I was what many doctors still refer to as a very ‘non-compliant patient’, only seeing my diabetes care team when I was in hospital with uncontrollably high blood glucose. I continually fell back into established patterns of behaviour.

Unsurprisingly, I started developing complications when I was around 26 years old. The damage was being done to my body in many unseen ways.

I first noticed the erectile dysfunction.

That is a huge deal for any man, but especially a man as young as I was then.

Retinopathy, neuropathy, hypoglycaemia

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health delivery

On 12 July 2005, I received the call I was waiting for. I was excited, scared, nervous, happy and sad all at the same time. I rushed to the University of Alberta Hospital and received 343 620 new islets! It was an amazing moment. I was awake during the entire the procedure and watched the donor islets as they dripped from an IV bag into my liver.

I was awake and watched the donor islets as they dripped from an IV bag.

unawareness, gastro-intestinal issues were all diagnosed in short order. I felt I was being struck down over and over with bad news, and was not able to grasp what was happening to me. My future looked bleak – that much I knew. As I saw it, reaching my 50th birthday would require a miracle.

In 2003, with dramatically declining health, the spectre of dialysis, blindness and death looming over me, I found the inner strength to begin fighting to manage my diabetes. I was seeing my endocrinologist every week or two, and was battling hard – but with little improvement. I could barely work; I was too ill to maintain a relationship; day-today living was an uphill struggle.

At around this time, my endocrinologist mentioned to me that I might be a good candidate for the Edmonton Protocol – an islet transplant. I looked into it and was encouraged to submit an application – 20 pages of it. And waited.

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The process begins I was sent for a series of in-depth tests and examinations. Pretty much every system in my body was poked, prodded and peered into. I remember a doctor on the islet programme asking me what I wanted as a result if I were to have a transplant. I replied, “More stable sugars.” Not “liberation from lifelong insulin therapy” – I just wanted to stop the world and get off the rollercoaster of relentlessly spiralling, followed plummeting, blood glucose.

The damage was being done to my body in many unseen ways.

I first noticed the erectile dysfunction.

In September 2004, I was accepted onto the programme. I was told that a transplant could take up to two years to become available, and in the meantime that I should stay as healthy as I could.

I found it hard to believe that this was happening to me. The sheer coincidence of circumstances that had come together to land me on that operating gurney at that moment were at once amazing and humbling. I was all too aware that I am just a normal person – nothing exceptional about me. But I happened to be living in the right place at the right time; my doctor was aware of the islet programme; that programme happened to be running in Edmonton, Canada. I distinctly remember thinking: this could be the most important day of my life – right here and right now.

Life after transplant The islets began working immediately.

My insulin dose was reduced by around 90%; within months I was insulin free.

Two years later, I underwent a second transplant, which stabilized me even further. Since then, I have not had to worry about my blood glucose, ever.

This new life was a little disconcerting at first. I was used to monitoring the ways my body was behaving, thinking about what I ate, the amounts of insulin I would inject or had injected, whether I was ‘high’ or ‘low’. Those constant calculations, questions and considerations were so very much at the forefront of my every waking thought that they had come to form part of my personality.

All of a sudden, I would never have to think about them again.

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For all the joy and relief this brought me, I still faced a journey into the unknown. Having traded off insulin for immune suppressing drugs, I had to worry about new and different side effects. Then there was also the fear of cell rejection. But despite those uncertainties, life was sweet!

Raising money for research works.

I am living proof.

I am aware of my spectacular good fortune. How differently things would have turned out for me had I not been able to access islet transplantation.

An enormous debt of gratitude I owe everything to the team in Edmonton and to my two donor families. Those families made the most difficult of decisions at time of terrible grief. I will remain forever deeply, deeply grateful to them.

Raising money for research works. I am living proof of the vital importance of research. I often tell people who campaign to raise money for research that their efforts led to my transplant – as I thank them now for the gift of life that has been given to me.

Jason Turner Jason Turner is lives with his wife in Moncton, New Brunswick, Canada. He is an advocate for diabetes and diabetes research with a passion for helping to raise awareness of islet transplant therapy and supporting the search for the cure.

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es it have Jason’s is a success story. But do with diaberelevance to other people living own editortes? Diabetes Voice talked to its Amiel, who in-chief, Professor Stephanie A ssfully to worked with colleagues succe nsplantatransfer the Edmonton islet tra tion programme to the UK.

eriencing many compliDiabetes Voice: Jason describes exp What was it that made cations as a result of his diabetes. tion? his team consider islet transplanta that islet transplantation SAA: It is important to recognise d from the pancreas of a (in which whole islets are extracte unrelated person whose multi-organ donor and given to an e 1 diabetes) does not islets have been destroyed by typ and even when people do guarantee insulin independence, islet transplantation, the stop having to take insulin after n a partially successful islets don’t live forever. But what eve protection from severe islet transplant will do is provide he had “hypoglycaemia hypoglycaemia. Jason mentions that w for himself when his unawareness” – an inability to kno port normal brain funcblood glucose is too low to sup ation, as it increases the tion. This is a very dangerous situ mia – which may cause risk of having a severe hypoglycae behaviour – even coma, confusion, aggression, abnormal fold. Self-awareness of seizure or, very rarely, death – sixagainst severe episodes hypoglycaemia is one’s best defence s or restore awareness – if we can’t stop the severe episode ntation has the answer. any other way, then islet transpla have this effect?

DV: How does islet transplantation that having even just a SAA: We don’t know! We know tion is a great protection little of one’s own insulin produc how it does this remains against severe hypoglycaemia but that having the ability to a matter for speculation. It may be insulin during a hypo is suppress even a little of one’s own ly good diabetes control important, or that a period of real ts function at top capac(no highs OR lows) while the isle body’s normal defences ity after the transplant allows the It is even possible that against hypoglycaemia to recover. isn’t part of injected the bit of the insulin molecule that

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health delivery

wn, insulin, the c-peptide as it is kno inst aga has some function in defending after hypoglycaemia. We do know that ogly islet transplantation, severe hyp e islet caemia is avoided as long as som function remains.

has to immunosuppressive drugs Jason ts as a take to stop both rejecting the isle to his ign transplant of tissue that is fore tibody AND to stop the diabetes reac are ts isle vating and destroying his new y side not very focussed and have man risk his ng effects – including increasi cer! of anaemia, infection and even can two e hav to We should note that he had this is transplants to get off insulin – been e hav because half the islets will after damaged by his body immediately n bee e hav transplantation – and he will And warned the islets won’t last forever. ors don an there will never be enough org ion to be able to offer islet transplantat . efit to everyone who might ben

look DV: Jason admits that he did not ng after his diabetes when he was you blems and this contributed to his pro t prothat made him eligible for the isle care gramme. People who took better that fair not is of themselves may feel it they are not offered this therapy…

young SAA: Jason did exactly what many peopeople – and even not such young etes. ple! – do when confronted with diab pro– and SAA: Not at the moment – the Denial of diabetes is very common we and you gramme isn’t effective enough ver y understandable. Being told r peocepdon’t have enough islets to offe have diabetes robs you of your per ch roa app y and ple. People need a stepped tion of yourself as a healthy bod ucing and – we have had great success red one way of dealing with that is to try cstru g inst it. hypoglycaemia problems usin ignore it. Or deliberately rebel aga ible high tured education programmes in flex Such behaviours of course result in s bete Dia as in rs, insulin therapy, described sugars and if they persist for yea ogies out Jason describes, it does greatly increase Voice last year; and other technol Lots of research is being carried p pum lin trans- the risk of complications. Another area in insulin delivery such as insu to improve the efficiency of the ntaim- of active research is how health care therapy can help too. Islet transpla plants, reduce the toxicity of the n whe es ntri s that professionals might help people like the tion is an option in some cou munosuppression and grow cell From younger Jason come to terms with their these approaches fail. function like islets in a laboratory. im- diabetes earlier. Meanwhile, if Jason was it we are not only learning about plicawe are offered islet transplantation mostly beDV: Jason describes other com proving cell therapy for diabetes, nt spla tran etes cause of his hypoglycaemia, that isn’t a tions of his diabetes. Will the learning a lot that may help in diab arch direct effect of his lack of engagement help them too? prevention in future. And if the rese ld’s really succeeds, we may be in a position when he was young SAA: The evidence from the wor when to offer people with diabetes occasional diabetes register shows that even insu- infusions of cells to control their blood DV: So should we all be celebrating people have to continue to take good glucose without need for monitoring. It with Jason? lin after a transplant, they do get would may sound like science fiction but it is n diabetes control. Over time, we : Yes indeed! It’s great that Jaso e, Jason SAA ntim mea the In e. of sibl sion pos t in gres leas aga pro at k expect this to reduce the has been able to get his life bac him are really pioneers, e like enc ple evid in e peo som and is e ther and ns complicatio and in so doing he has participated e. anc adv nce e. scie rov the to imp ing s may help aim that some complications a programme of research that to do more to help everyone really be able tion nta spla tran t n isle bee es has Do : he t DV DV: Jason comments tha with diabetes. ? life l y ma ntr nor cou a ore in rest n bee e hav to very lucky . Does t, you that offered islet transplantation SAA: Not really. At the momen ple to his story have any relevance to peo swap being a person with diabetes ty icul diff e hav and living in countries that being a person with a transplant, ple peo r thei to ical s plie sup ic bas in getting we’ve already touched on the med e the with diabetes? implications of that. Also, becaus betes transplant does not restore a full set of SAA: Yes, I think so. Otherwise Dia As my functioning islets, the people who do Voice might not have published it! tion best are those who maintain a lifestyle remarks suggest, islet transplanta . The that does not stress the islets too much! is a far from perfect procedure

caeDV: Should everyone with hypogly nt? mia problems be offered a transpla

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Clinical CARE

Needlestick injury

puncturing the Kenneth Strauss

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April 2012 • Volume 57 • Issue 1

Clinical CARE

prevention –

myths

Issues relating to people with diabetes injecting themselves with insulin quite rightly are an important focus of diabetes care. Concerns include avoiding the complications of inaccurate dosing, and ensuring the proper care of injection sites and correct use of blood glucose selfmonitoring. The current implementation of the 2010 EU Directive on sharps injury prevention, places the spotlight of attention on the safety and protection of healthcare professionals when they are administering treatment to people with diabetes.

Questions arise over the risks to the diabetes specialist. Apparently, false assumptions abound regarding the risk of needlestick injuries and infection in diabetes treatment that need to be addressed. This short article reviews some commonly held misconceptions and provides evidence on which the authors refute them.

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Myth number one – people with diabetes have a lower prevalence of dangerous viruses potentially transferrable by needle-stick injuries than the the general population.

People with diabetes are not protected from the ills that affect humankind. The prevalence of viral infections among the diabetes population is at least equivalent to that in the general population.

According to one study, hepatitis B DNA was discovered in 11% of people with type 2 diabetes, compared to 3% of the control group – a difference that was statistically significant.1 We cannot rely on the fact that a high proportion of healthcare workers treating people with diabetes will have had hepatitis B vaccination. Vaccination coverage is far from 100%,2 and even people who have been vaccinated may not be completely protected because titers of protective antibodies decline over time.

Moreover, there are other dangerous viruses (such as HIV and hepatitis C) for which there are no vaccinations. There

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are more than 30 viral diseases that can be transmitted by a needlestick injury.

Perhaps reflecting a link between hepatitis C and increased risk for diabetes, the prevalence of hepatitis C infection is also higher in people with diabetes than in people without diabetes.3 The prevalence of HIV is no lower than in the general population.4 Given the ubiquity of sharps in diabetes self-management, healthcare professionals working with people with diabetes therefore are at the same, if not higher, risk from needlestick injuries and infection than those ministering to the general population.

There is no branch of medicine with little or no risk of needlestick injuries.

Myth number two – there are not as many needlestick injuries when treating people with diabetes because needles are smaller and do not carry a significant risk of infection; prophylaxis clears any possible infections; and anyway, diabetes needles and injection devices do not get contaminated.

Wherever there is risk of sharps injury, the user and all healthcare workers must be protected by adequate safety precautions.

In fact, the situation is exactly the opposite. Needlestick injuries with diabetes needles or lancing devices are one of the most common sharps injuries in the healthcare setting.3 There is no branch of medicine with little or no risk of needlestick injuries. Moreover, most people with diabetes are treated in a department of internal medicine, where the highest risks of needlestick injuries occur. To argue that people with diabetes inject with tiny needles that, by virtue of their size, represent little risk of injury misses the main point: the small needles used for diabetes medications have been shown to retain traces of blood. Pen injection devices aspirate human cells back into the cartridge.

These potentially infectious cells then can be deposited back into the needle

and transmitted accidentally should a needlestick injury occur. The small size of diabetes needles does not reduce risk significantly; it takes only minute quantities of blood to transmit hepatitis B or hepatitis C. Let us do some mathematics on the number of people who could be infected by the blood in one hollow-bore needle: the average volume of blood inoculated in a needlestick injury by a 22-gauge needle is somewhere between 1.0 µL and 2.0 µL.4 The viral load in a millilitre of infected blood can be anywhere up to a billion (109) virus particles for hepatitis B.5 If we assume a typical load of 10 million (107) per millilitre of infected blood, this would give a load of 10,000 virus particles per microlitre. This is enough to infect many people with hepatitis B. The load for hepatitis C is lower but, again, is enough to infect a number of people. If we move from theoretical risk to real conversions, studies show hepatitis C conversions running at between one and two in every 100 needlestick injuries that puncture the skin.6 What about the impact of prophylaxis on people unlucky enough to sustain a needlestick injury and subsequent infection? Certainly, the latest prophylactic medications can prevent conversion.

However, there is a ‘golden hour’ in

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which urgent action must take place for those to be effective. Moreover, when one does receive prophylaxis, there are a number of potential adverse side effects – not just physical, but also occupational and psychological. Those affected have to change their work routines and duties for periods following injury and may experience an extremely stressful prolonged period of not knowing whether they have contracted a life-threatening infection.7 Changes in sexual habits also have to be enforced, putting a strain on family life and relationships.

even exist, although they are available in many countries across the world.

There is evidence that needlestick injuries drop dramatically where such safety devices are adopted.10 Safety devices are more expensive than their conventional counterparts, which initially may seem off-putting to healthcare organizations, yet a brief look at studies on the subject reveals that the prevention of injury usually leads to a clear return on investment, especially in mitigating legal, regulatory, financial and reputational risk.8,9,10

Myth number three: people with diabetes recap and safely dispose of their needles; there are no diabetes safety needles; and the EU Directive on sharps injury prevention specifically excludes diabetes treatment.

It has been reported that only 33% of needles used diabetes in the home setting go into containers made specifically for the disposal of sharps; 12% go into an empty bottle or milk carton, 46% go straight into the rubbish after recapping, and 3.5% go in the bin without even being recapped.10 (See side note.)

Finally, the 2010 European Directive, which is now in force, specifically stipulates that wherever there is risk of sharps injury, the user and all healthcare workers must be protected by adequate safety precautions, including the use of ‘medical devices incorporating safetyengineered protection mechanisms’.11

There are a number of safety-engineered medical devices on the market, comprising active devices (where the user has to activate a needle shield manually) or passive devices (which shield or retract the needle automatically after it has been deployed). Many people are unaware that these devices

Closing point In conclusion, the treatment of people with diabetes cannot be logically excluded from best safety practices. By May 2013, the EU Directive will make it compulsory to use safety devices in all situations where there is significant risk of sharps injury and infection. In the meantime, many healthcare organizations across the EU are introducing safety devices well in advance of that deadline in order to avoid financial, legal, regulatory, reputational and above all, human, damage.

Side note It is important to that note while capping your own sharps is advantageous because it robustly covers the sharp point, it is NOT advised that healthcare professionals or others re-cap someone else’s needles as the risk of missing the cap and self-administering a needlestick injury is very high.

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Kenneth Strauss Kenneth Strauss is European Medical Director at Becton Dickinson and Director of the European Medical Association.

Declaration of duality of interest The author’s employer, Becton Dickinson, develops, manufactures and sells medical supplies, devices and laboratory instruments.

References 1. D emir M, Serin E, Göktürk S, et al. The prevalence of occult hepatitis B virus infection in type 2 diabetes mellitus patients. Eur J Gastroenterol Hepatol 2008; 20: 668-73.

2. D e Schryver A, Claesen B, Meheus A, et al. European survey of hepatitis B vaccination policies for healthcare workers.

Eur J Public Health 2010; 21: 338-43.

3. K iss P, De Meester M, Braeckman L. Needlestick injuries in nursing homes: the prominent role of insulin pens. Infect Control Hosp Epidemiol 2008; 29: 1192-4.

4. M ondy K, Overton ET, Grubb J, et al.

Metabolic syndrome in HIV-infected patients from an urban, midwestern US outpatient population. Clin Infect Dis 2007; 44: 726-34.

5. P ublic Health Agency of Canada. Pathogen Safety Data Sheets and Risk Assessment.www. phac-aspc.gc.ca/msds-ftss/msds76e-eng.php 6. U K Health Protection Agency. Eye of the needle – UK Surveillance of Significant Exposures to Bloodborne Viruses in Healthcare Workers November 2008. www.hpa.org.uk/webc/ HPAwebFile/HPAweb_C/1227688128096 7. P aton N. Why we must stop needlestick injuries. Nurs Times 2006; 102: 16-8.

8. A rmadans Gil L, Fernandez Cano MI, Albero Andres I, et al. Safety-engineered devices to prevent percutaneous injuries: costeffectiveness analysis on prevention of high-risk exposure. Gac Sanit 2006; 20: 374-81.

9. G lenngård AH, Persson U. Costs associated with sharps injuries in the Swedish health care setting and potential cost savings from needle-stick prevention devices with needle and syringe. Scand J Infect Dis 2009; 41: 296-302.

10. N HS Scotland. Needlestick Injuries: Sharpen your Awareness. Annex 3 – Safer devices cost benefit assessment template. www.sehd. scot.nhs.uk/publications/nisa/nisa-13.htm 11. C ouncil Directive 2010/32/EU, Official Journal of the European Union, L134/71 http://eurlex.europa.eu/LexUriServ/LexUriServ. do?uri=OJ:L:2010:134:0066:0072:EN:PDF

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Care, education, protection – the Associação Protectora dos Diabéticos de Portugal goes from strength to strength João Manuel Valente Nabais

The Portuguese Diabetes Association is the world’s oldest diabetes association and a senior Member Association of the International Diabetes Federation.

From the moment it was founded, early in the 20th century, to the present day, the Associação has been driven by a single overarching objective: to improve the quality of life of people with diabetes. Involved nationally in diabetes advocacy and the provision of education, as well as the delivery of care, APDP has become a key player in the healthcare arena in Portugal and its activities reach many thousands of people with diabetes.

Diabetes in society

Founded in Lisbon in 1926 by Dr Ernesto Roma, the Portuguese Diabetes Association (APDP) initially was called the Portuguese Association for the Protection of Poor People with Diabetes. Dr Roma was an innovator in the true sense of the word: he developed from scratch a structure that made economic and social support available to needy people and provided education to manage diabetes.

Building for a brighter future Roma had travelled to Boston, USA, in 1922, where he visited the Joslin Clinic and witnessed the first ‘miracles’ of insulin therapy. On his return to Portugal, Roma was outraged by what he saw as the scandalous loss of life among poor people with diabetes, who received no state assistance and could not afford to buy life-saving insulin. He gathered a group of wealthy associates and people with diabetes and on 13 May 1926 founded an organization that would provide essential support to people with diabetes throughout that century and into the next.

People at the centre of care Roma understood from the outset that it is only the person with diabetes who, with adequate and appropriate instruction and access to medication, can ensure correct treatment and control of the condition. To achieve this, people needed to develop specific skills, often those only commonly available in healthcare professionals. APDP published its first ‘bulletin’ on diabetes in 1931, in which the complexities of diabetes care were explored and the value of therapeutic diabetes education highlighted. The multidisciplinary team-based approach, with an informed person with diabetes at the heart of care, remains the cornerstone of ADPD’s clinical philosophy.

The multidisciplinary team-based approach remains the cornerstone of ADPD’s clinical philosophy.

Over the decades, APDP evolved into a modern, countrywide institution and an

international reference as a specialized diabetes healthcare provider. Its members now include people with diabetes and their families; healthcare professionals of many disciplines and others interested in improving outcomes for people with diabetes. In 1985, the President of the Republic of Portugal decorated APDP as Honorary Member of the Order of Merit for distinguished charitable services to the community.

The Association was recognized in 2009 as the world’s first International Diabetes Federation Centre of Education.

Action on many fronts Today, APDP’s activities are rolled out in four key areas: advocacy, clinical care, research and training.

Tackling social issues In partnership with other diabetes organizations and national bodies, including the Portuguese Society of Diabetology and Endocrinology and the Union of Private Institutions for Social Solidarity, the Associação is a proactive advocate for the rights of people living with diabetes in Portugal. Represented on IDF’s Board (and currently providing the PresidentElect of IDF-Europe) and the Executive Committee of the Diabetes Education Study Group, APDP is a committed force for health justice on the international stage. The Association also maintains strong links with the leading European diabetes organizations.

The Associação is a proactive advocate for the rights of people living with diabetes in Portugal.

A prolific publisher of books, magazines and other printed and online material, APDP collaborates with the Ministry of

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edge of healthcare professionals and people with diabetes. The Department of Training at APDP’s School of Diabetes held training courses in 2011 for more than 600 healthcare professionals and some 1200 people affected by diabetes.

Health in the definition of national health policies. The Association had an important role in the drafting of the Portuguese National Diabetes Programme and is closely involved in its implementation.

APDP has been providing diabetes training for healthcare professionals and people affected by diabetes since 1974.

relevant scientific work in collaboration with external institutions of reference, such as the Gulbenkian Science Institute, and the University of Medical Science in Lisbon. APDP participated in international diabetology network studies like EURODIAB and DIRECT. It is active in the Euradia, SWEET and IMAGE projects and recently funded the Education and Research Centre (APDP-ERC).

Providing clinical care More than 40,000 people nationwide benefit from integrated and specialized healthcare services provided by APDP in a range of diabetes-related fields – diabetology, paediatrics, nutrition, ophthalmology, cardiology, podiatry, nephrology, urology, women’s health, mental health. Working under the auspices of a Ministry of Health protocol on healthcare for people with diabetes (and training for healthcare professionals), the Association’s clinical services are integrated into the hospitals and local healthcare centres.

Education for all APDP’s education and training activities cover the range of players involved in diabetes. Healthcare professional training (for physicians, nurses, dieticians, nutritionists, psychologists) is undertaken in the form of courses, meetings and seminars; therapeutic education in chronic diseases has been developed by APDP and is offered throughout the country. University students and professors, as well as people with diabetes and their family members, receive diabetes education at APDP’s centre in Lisbon.

In 2012, the Associação will initiate a Postgraduate Course in Diabetes for Healthcare Professionals.

Supporting science APDP promotes the development of scientific studies in epidemiology and diabetology. Moreover, it carries out

The official recognition of training dates back to 1974, when the Government requested input from the Associação to improve the diabetes skills and knowl-

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Holiday camps for people with diabetes have figured among APDP’s activities since the 1950s. Currently, the Association organizes several camps and other group activities targeted at particular age groups or focusing on specific subjects, such as ‘weekends away’ for people using an insulin pump and ‘active Saturdays’ for people with type 2 diabetes.

One small step…

It is said that when Ernesto Roma received the invitation to become a member of IDF back in the 1950s, he replied in writing, saying that the APDP would be very happy to be part of this important institution but that the subscription fee was too high for such a poor Association – and that this payment would jeopardize its work. In the envelope, he enclosed one pound sterling. The subscription was accepted.

João Manuel Valente Nabais João Manuel Valente Nabais is President-Elect of IDF Europe (joao@idf-europe.org) and board member of APDP.

Find out more Visit www.apdp.pt for more on the latest APDP initiatives and activities.

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The World Diabetes Congress in Dubai: a personal view Sir Michael Hirst

Dubai’s promotional tagline, ‘the meeting place of the world’, rang true last December, when more than 15,000 participants gathered there for the World Congress, making it the most successful Congress ever organized by IDF – and not only in terms of the number of people attending: net revenues from Dubai broke all records. But these impressive figures tell only a part of the story of an historic event that capped a stellar year for diabetes. In this report, Sir Michael Hirst offers his unique view, as both IDF President Elect and a person affected by diabetes, of the Dubai Congress.

It is difficult to begin a report from Dubai without straying immediately into hyperbole. For this was truly a world event, of the kind that should make a mark in history. Uniting diabetes communities from around the globe, last December’s World Diabetes Congress opened its doors to 15,100 people from 172 countries. There is a very interesting breakdown of just who registered for the Congress, where they came from and which sector or speciality they represent on the IDF website (www.idf.org/worlddiabetescongress/ past-congresses/dubai-2011).

The 2011 Word Diabetes Congress, undeniably our best ever, lifted diabetes

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above the myriad burning issues that vie for attention in these turbulent times, and placed us on the world’s stage: more than 1500 expert speakers and a barrage of related events caught the attention and the imagination of the world’s media – not just the scientific, but also the popular, press, and perhaps even more significantly for our future, the increasingly powerful voices booming out through electronic internet-based social media.

Crafted from the expertise and years of sheer hard graft by the Programme Committee, led by Stefano del Prato, the programme broke new ground with an avant-garde stream on Global Health Challenges – taking up the baton of advocacy for world health and health justice after the historic UN High-Level Meeting on NCDs a couple of months earlier.

IDF owes a debt of gratitude to Prof del Prato, his Programme Committee and all of the Speakers and Chairs for their deeply appreciated contribution to the quality of the work on display in Dubai. (The full programme is available for download at the IDF website.)

A matchless Programme Whatever one’s interest in diabetes, that interest was catered for in a remarkable and most ambitious Programme.

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Where future solutions were nurtured For a non-clinician like me, the poster exhibition was a veritable treasure trove, with row after row of new and brilliant ideas calling out to be heard and understood. The broad spectrum of topics explored there each day reflected the complexities of diabetes – from the web of factors behind its aetiology and development, through the gamut of environmental, socio-cultural, economic and developmental issues affecting its prevention, management and care; through to the rigorous research that steers the hope we all hold for a cure somewhere in the future. I was moved and inspired by the enthusiasm of the younger poster exhibitors and their drive to explain their research, its findings and the relevance of these to people with diabetes and diabetes professionals in their own country and beyond.

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Many have heard it said by the older hands that attracting younger clinicians to diabetes is ‘not easy these days’. A stroll through that huge covered nursery of insight and ideas at the Congress venue in Dubai would confound that – how encouraging it was to see so many younger doctors choosing to cultivate the power of their minds in endocrinology!

Our future leaders – initial steps If Dubai served as a seed garden for the future of diabetes solutions for prevention, treatment and a cure, it served also as a training ground for our future leaders in diabetes advocacy. Concretely, the World Diabetes Congress was the launch pad for the Young Leaders in Diabetes Programme.

Nutured by IDF Vice President Debbie Jones, the Young Leaders in Diabetes

Programme identified future potential leaders of national diabetes associations and brought them together in Dubai for a leadership-training course. My wife, Naomi, and I joined the Young Leaders for a night in the desert. I was somewhat overcome over by the strength of their commitment, the power of their enthusiasm and the steely realism and maturity of their vision of the work ahead.

The IDF Board has much to gain from the presence at its forthcoming meeting of the president of the Young Leaders, currently Alex Silverstein – thus we may ensure that the perspective of young people with diabetes is not overlooked.

Creating opportunities to innovate A fascinating event with spectacular potential actually to shift some of the major

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social and economic forces behind the current global epidemic of type 2 diabetes took place in Dubai the day before the Congress opened. The Global Diabetes Forum brought together many important stakeholders in health, including Sir George Alleyne, who currently serves as UN Secretary-General's Special Envoy for HIV/AIDS in the Caribbean region; Keith Vaz, a UK Member of Parliament and Chair of the Home Affairs Select Committee; and Guy Barnett, a former member of the Australian Senate.

These representatives of government and civil society joined leaders from the private and public sectors. Their in-depth discussions centred on future directions for action by the multiple players, with business very much to the fore, who will have to roll up their sleeves and work together to provide the all-of-society solutions we need to defeat diabetes. (See Ann Keeling’s analysis of the Global Diabetes Forum on page 11.)

Believe it or not, there is room for improvement!

In Dubai, IDF set itself exceptionally high standards. As we look towards 2013 and our next World Diabetes Congress in Melbourne, now is the time to reflect on one or two areas that can be tightened up in order to make future events deservingly flawless.

The Living with Diabetes stream held its meetings in the Global Village and provided a range of excellent speakers. However, some of them had rather sparse audiences. I appreciate that those who attend the Congress are most likely to focus on the stream that best relates to their work and interest, but it would be nice to see a bit more ‘cross-fertilization’ in attendances at the Living with Diabetes sessions. Those who were up early on the Thursday morn-

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ing would have heard the magnificent singing voice of Janelle Colquhoun, the Australian opera singer who has battled many health problems and, despite her total visual impairment, remains resolutely upbeat about her diabetes.

Innovation can carry risk! The Programme was suspended on the Wednesday afternoon to enable delegates to join the ‘Dubai Dialogue’. It attracted fewer delegates than expected. Planning for the future, we need to find a place on the programme agenda that will optimize the impact of such innovative events.

professionals. Our success in Dubai is a tribute to IDF’s Congress Unit, led by Luc Hendrickx, Celina Renner and their splendid team.

Where next? The Melbourne Congress will open its doors to the global diabetes family on 2 December 2013 – much more about this in future editions of Diabetes Voice. I look forward to seeing you there!

Some concluding thoughts The World Diabetes Congress unquestionably raised the profile of diabetes in a country afflicted with alarmingly high prevalence. Indeed, five out of the top ten countries for prevalence of diabetes are located in the Gulf Region, making Dubai an obvious place to have had our congress.

The interest in the Congress shown by leaders of the Emirates was refreshing and profoundly appreciated. We were honoured by the presence at the opening ceremony of the Ruler of Dubai, Mohammed bin Rashid Al Maktoum. On more than one occasion, the Crown Prince, Hamdan bin Mohammed bin Rashid Al Maktoum, visited, makingboth official and unofficial visits to the Congress exhibition.

Indeed, there has never been a Congress at which there were so many official visits by national leaders – with all the welcome attendant media interest and coverage that brings. Readers can get some idea of the deluge of media interest created in Dubai by following the links on the IDF website (www.idf.org/sites/default/files/attachments/WDC-press-review.pdf).

Terms such as ‘world class’ are often overused but the staging of such an even on so daunting a scale was managed by a team of ultra-efficient yet very human

Michael Hirst Michael Hirst is President Elect of IDF. He will take over the presidency of the Federation in January 2013.

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Insulin for Life – building capacity, saving lives Ron Raab

Insulin is a life-sustaining medication, designated an essential drug by the World Health Organization. Although it should be universally available to everyone who requires it for survival, in many countries access to insulin is not secure – resulting in life-threatening complications for large numbers of children and adults with diabetes worldwide. Indeed, most people in most countries of the world who need life-saving insulin cannot obtain it.

Insulin for Life is a practical model that works to help fill the gaps by providing life-saving medications such as insulin, test strips and other diabetes supplies. Established in Australia in 1986, Insulin for Life now comprises a global network of affiliate centres and is increasingly focusing on capacity building to ensure the sustainability of this innovative and life-saving initiative.

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The cost of insulin to a person with diabetes varies greatly between countries. This is a critical problem, particularly in those low- and middle-income countries where the full, unsubsidized price of insulin is high and must be paid by a person with diabetes and his or her family for many years.

In many such countries, the annual cost of insulin for a person with diabetes is higher than 50% of the average annual income. For people with diabetes in the poorest countries of the world, the inability to afford this essential medication is a major cause of death.1 Helping to fill the gap, meeting essential needs In many developing countries, children with diabetes die soon after diagnosis, or have poor control and develop early and devastating complications. In some countries, there are few if any long-term survivors of type 1 diabetes. It is mainly children and young adults who die as a consequence of high concentrations of glucose in their blood, often the result of an incorrect or late diagnosis or a lack of expert care. Insulin for Life, a non-profit organization founded in Australia in 1986, attempts to fill the gaps for at least some of the people in urgent need by providing life-saving medications such as insulin, meters, test strips and other diabetes supplies.

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Ron Raab addresses the World Diabetes Congress in Dubai.

IFL collects in-date, unopened and unneeded insulin, test strips and other diabetes supplies and distributes them to children and adults with diabetes in developing countries where access to these life saving supplies is limited. Each year, IFL distributes approximately enough insulin to keep 2000 people alive and also 400,000 glucose test strips and syringes, pen needles, insulin pens, meters and lancets. These supplies are used to support, on an ongoing basis, children and adults in 20 countries and more than 80 countries countries have received supplies.

Insulin for Life is saving lives every day.

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Australia. Sometimes, supplies cannot be used by the NDSS, including strips that approach their use-by date or are withdrawn from the market – replaced by an updated version.

An agreement exists between Insulin for Life and Diabetes Australia by which test strips and syringes are donated by NDSS centres throughout Australia.

Insulin for Life is promoting collaborative models in other regions to develop effective collection and distribution programmes.

The items that are collected and distributed by Insulin for Life otherwise would be wasted, including insulin collected from diabetes clinics. These are sent by Insulin for Life to recognized organizations via agreed systems. Many lives are being saved every day.

Insulin for Life is promoting this model in Europe, North America and other regions in order to develop similar collection and distribution programmes. If systems can be established to collect and donate supplies worldwide, potentially large numbers of people will benefit. These supplies otherwise may be destroyed.

Partnership with government The National Diabetes Services Scheme (NDSS) is an initiative of the Australian Government and is administered by Diabetes Australia. It provides test strips, syringes and other items at subsidized prices to people living with diabetes in

Collaboration with IDF Two agreements, dating back to 2005, exist between Insulin for Life and IDF and relate to short-term emergency supplies and the IDF Life for a Child Programme. Indeed, collaboration between Insulin for Life and the Life for a Child Programme

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ution Network

IFL Global Collection and Distrib

IFL Canada

IDD Trust UK

IFL Netherlands IZL Germany IZL Austria

IFL USA

Insulin for Life Melbourne Australia Diabetes Auckland

Countries currently being supplied by IFL Australia and USA (other IFL centers have their own destinations)

Insulin for Life Melbourne Australia

Bolivia • Cambodia • China • Congo (Dem Rep) • Congo (Rep) • Ecuador • Haiti • India • Maldives • Pacific Islands • Philipines • Rwanda • Tanzania • Uzbekistan • Zimbabwe

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began in 2000 and helps provide life-saving medication and clinical care for children in developing countries. Currently, 4000 children and adolescents in 28 countries including Bolivia, Azerbaijan, Nepal, Rwanda and Tanzania, receive support from Life for a Child.

Insulin for Life steps in when and wherever needed to assist the International Diabetes Federation’s response to emergencies, where there has been a disaster such as floods, tsunamis, hurricanes and earthquakes, where normal supplies have become unavailable. For example, supplies of insulin, test strips, lancets and syringes were sent within days to the Philippines following the recent typhoons, as well as to countries affected by the Asian tsunami, Hurricane Katrina and the earthquake in Haiti. Insulin for Life is more than a supplier. It plays a role in delivering much needed education about diabetes and also can provide technical support in an emergency. It facilitates medical student training in diabetes and encourages interest in diabetes as a profession in countries with a major shortage of health care professionals in this field.

IFL collaborates with the IDF Life for a Child program to meet particular needs and to identify new recipient clinics.

Insulin for Life’s collaboration with the International Diabetes Federation Life for a Child Programme began in 2000 and helps provide life-saving medication and clinical care for children in developing countries. Currently, 4000 children and adolescents in 28 countries including Bolivia, Azerbaijan, Nepal, Rwanda and Tanzania, receive support from Life for a Child.

Insulin for Life – a global network Insulin for Life Global comprises a network of independent not-for-profit affiliated centres around the world, which collect and distribute essential diabetes supplies. Insulin for Life Australia, pioneer of this innovative model, is also the co-ordinating centre for IFL Global.

Insulin for Life around the world I nsulin for Life Australia I nsulin Zum Leben Austria I nsulin for Life Canada I nsulin Zum Leben Germany I nsulin for Life Netherlands I nsulin Dependent Diabetes Trust-UK I nsulin for Life USA The affiliates have websites that can be accessed freely via the Insulin for Life site (www.insulinforlife.org). They do wonderful work as volunteers and are saving lives.

Build with us for the future We encourage individuals and organizations to consider setting up new centres for collection and distribution. It is not difficult. Visit our website; contact us – do it now and save lives.

Ron Raab Ron Raab OAM is President of Insulin for Life (info@insulinforlife.org) and is a Past Vice-President of the International Diabetes Federation.

Visit www.insulinforlife.org

References 1 International Diabetes Federation. Diabetes Atlas 4th edition. IDF. Brussels, 2011.

2 O gle G, Raab R. Addressing inequalities in access through longterm collaboration. Diabetes Voice 2006; Special Issue.

3 Raab R. Insulin for Life. Diabetes Conquest; Summer 2010.

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Ninety years of insulin – Canada celebrates Marc Aras

The discovery of insulin in 1921 is undoubtedly one of the most significant medical discoveries of the 20th century. Frederick Banting is considered as the main discoverer since he was the one who had the idea of tying a ligature round the pancreatic canals in order to provoke diabetes. When he was still a young surgeon in London, Ontario (Canada), he met JJR Macleod of the University of Toronto and suggested experimenting with this procedure in dogs. Not entirely convinced, Professor Macleod provided him with the necessary research laboratory and offered the services of a young science student, Charles Best. They started their experiments during the summer of 1921. The dogs indeed developed diabetes. The pair then tested various pancreas extracts in order to – or so they hoped – cure the diabetes. After numerous trials, they managed to stabilize the glycaemia of one of their guinea pigs. Marc Aras takes up the story of a truly great Canadian achievement.

Banting and Best showed their results to Macleod and excitement began to grow around their work. A young chemist, James Collip, was appointed to help them prepare pancreas extracts. The first articles from that research were published at the end of 1921.

On the 11 January 1922, the first injection of an extract was given to 14-yearold insulin pioneer Leonard Thomson.

According to the doctor who gave him that injection, the thick liquid was a brownish colour, which clearly indicates the presence of other substances.

Analyses were carried the following day: Leonard’s glycaemia dropped from 24.5 mmol/L to 17.8 mmol/L. A relatively large amount of glucose was still passing through his urine and this first trial was considered a ‘semi-failure’.

Macleod and Collip were not aware of the intentions of Banting and Best; they were surprised and upset at having been kept unaware of these developments.

Collip believed he could produce purer insulin and told Banting and Best that they should have waited before experimenting on people.

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The extract was then called ‘isletin’; only in April 1922 did it receive the familiar name insulin.

Only on 23 January, 12 days after the first injection, Collip resumed the experimental treatment with Thomson.

This time, the success was complete; his glycaemia dropped from 28.9 to 6.7mmol/L. Nearly no sugar is passed through into the urine. Over the next couple of days, when Leonard did not receive any of the insulin extract, his glycaemia rose again. During the following weeks, he received the daily injections that helped him gain weight and recover some strength.

In February 1922, six young people with diabetes received insulin extract with the same positive results. At that time, the extract was then called ‘isletin’; only in April 1922 did it receive its final, now familiar, name – from the English physiologist Sir Edward Albert SharpeySchafer. The breakthrough in February had made the headlines. Macleod’s laboratory began preparing larger amounts of insulin in response to overwhelming demands. The US-based Eli Lilly Company was approached to produce insulin in industrial quantities. In 1923, insulin made from ox pancreas – and later from pigs – was made available to large numbers of people with diabetes.

At the end of 1923, Banting and Macleod received the Nobel Prize for their discovery. They shared this Prize with their two fellow researchers.

If Banting were working today, at least 10 years would be needed for insulin to be approved.

Perhaps the most astonishing part of this discovery is the speed with which they moved from animal testing to commercialization. In comparison, if Banting were working today, at least 10 years would be needed for insulin to be approved! The protocols for research and the consent of people, like Leonard Thomson, undergoing an experiment are much stricter nowadays, and must be passed by an ethics committee. The speedy processes of yesteryear saved many lives.

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DiabetesVoice

Different types of insulin have since been developed – the fast- and sloweracting insulins. In the 1970s, the first human insulins were developed, not from human pancreas but by chemical manipulation of animal insulins and by genetic engineering of yeast and bacteria.

Gene modification produced the rapidacting analogue insulin in the 1990s and flatter long acting insulins a little later.

Research is still underway to develop other types of insulins that might help people achieve better control.

Today, more than 30 million people worldwide live thanks to insulin.

Last year, the first person to have lived on insulin for 85 years was celebrated in the USA. Bob Krause, a 90-year-old retired engineer was born in the year insulin was discovered!

The Bank of Canada announced on World Diabetes Day, 14 November, 2011 the release of a new CAD100 bill made of a special resistant material, commemorating the discovery of insulin.

The world-famous Canadian medical achievement is portrayed on the reverse of the bank note, where an insulin vial illustrates that historic breakthrough.

Marc Aras Marc Aras is the communication director of Diabète Québec.

April 2012 • Volume 57 • Issue 1

Dear Diabetes Voice readers, e time now.

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