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Wishing you another happy and hopeful (and ideally blue-colored) World Diabetes Day, Friends!

Of course, this celebration held annually on Nov. 14 was placed on this particular day thanks to its historical significance as the birthday of insulin co-discoverer Dr. Frederick G. Banting, born on this date in 1891. He would be celebrating his 128th birthday this year if he were still with us.

World Diabetes Day was initiated by the Brussels-based International Diabetes Federation in 1991. Looking back, some great related moments stand out: such as how in the early 2000's, the Blue Circle came to be the international symbol of diabetes; and how in 2016, for first time ever, Google created a diabetes-specific Google Doodle for all web searchers to see! That Doodle paid tribute to Dr. Banting and his amazing, life-saving discovery. We've also paid tribute to Dr. Banting and his legacy displayed at the historic Banting House in London, ON, that we've had the pleasure of visiting personally a couple times.

As mentioned at the start of the month, there's always quite a bit happening in November for National Diabetes Awareness Month and World Diabetes Day (WDD), and that remains true in 2019.

Yet there's also been quite some controversy over the past year related to the International Diabetes Federation (IDF) -- the global group that's largely led the way on WDD and international diabetes messaging for the past few decades. Some have wondered if the influential IDF is on the verge of imploding, and what these internal debates and public criticisms may mean for our Diabetes Community across the world.

Before we dig into that drama, we wanted to highlight some of the advocacy and awareness-raising activities happening for World Diabetes Day today.

 

World Diabetes Day 2019

Check out this list of the many different activities and initiatives happening throughout November as the big diabetes awareness month. A few specific things to know about for WDD:

Annual DSMA Chat: It's become an annual tradition for the D-Community to come for a day-long diabetes chat on Twitter. Hosted by well-known advocate Cherise Shockley who founded the DSMA (diabetes social media advocacy) group nearly a decade ago, this WDD-focused chat will run for 15 hours (from 8am-11pmET) using the hashtag #WDD19chat as well as the usual #DSMA one. There will be a variety of hosts from around the world leading the chat discussion each hour, with topics ranging from advocacy, tech advancements, daily life with diabetes and how we go about our routines.

City of Hope Facebook Live Panel: Beyond Type 1 fo-founder Chef Sam Talbot, who lives with type 1 himself, is moderating an hour-long panel from the City of Hope headquarters in Southern California on World Diabetes Day. The conversation will cover emerging therapies, promising treatments and the future of diabetes medicine. Those participating include researchers Drs. Bart Roep and Debbie Thurmond from City of Hope, along with our own editor-in-chief of DiabetesMine Amy Tenderich. You can follow that FB Live panel discussion here.

Hip Hop for the Blue Circle: If you don't know Kris Maynard, you should. He's the diabetes advocate and small business leader in Washington state who  -- based on his profession as an EMT -- developed and launched a fast-acting glucose gel necklace known as Glucose Revival. For WDD and November, he's helped created a hip hop diabetes awareness video of a called song, "Tell Me Why" -- written and performed by a Texas-based T1D named Broderick Perkins, who goes by BIP as his music alias.

Maynard tells us, "The song is about BIP's journey living with diabetes since being diagnosed at age 15, and everyone joining him in the video also lives with diabetes and comes from all four corners of the USA."

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Hip hop singer Bip, who lives with T1D, has made a diabetes awareness video with others in the community.

The aim is to push a broad message about embracing the Blue Circle and making it known as the universal symbol of diabetes. Maynard believes that not enough people, either in or outside of the advocacy community, are familiar with this symbol and its potential to unify us and raise awareness. It has been a struggle at times, since the biggest national diabetes orgs in America have been hesitant to adopt it.

"The purpose of the symbol is to give diabetes a common identity. When it is recognized, we can get the attention and help needed before it reaches more. It is the symbol of help and a symbol of hope!" Maynard says.

We agree wholeheartedly. And it's unfortunate that even as we work toward more global awareness and unity, the very organization behind the Blue Circle originally -- the International Diabetes Federation -- has been experiencing some serious internal controversy.

 

International Diabetes Federation (IDF) Meltdown?

First, it's important to understand that IDF is actually a governing body helping to coordinate a collection of 200+ organizations from ~170 countries and territories around the world that work together on diabetes care, policy and advocacy. Culling everyone's interests is clearly no simple task.

Still, the IDF has accomplished some great things over the years. Many may know that IDF led the fight back in 2006 to get an official United Nations Resolution passed to recognize World Diabetes Day and the Blue Circle as a universal symbol for diabetes that could unite the community.

To many, the IDF has long represented the leading international authority on anything diabetes -- not least because it has the word "international" right there in the name. Unfortunately, all is not well in this global mix of member orgs, who have begun raising questions publicly about how IDF is run and priorities of those in charge.

In March 2019, a damning BMJ article exposed what many had been discussing privately and in side conversations at diabetes conferences for some time now. The headline said it all: "Questions over future of global diabetes group as founding members resign." Yikes!

The article outlines how IDF has been plagued by internal conflicts and four founding member organizations -- including the British national org Diabetes UK -- have recently resigned. The shifts in IDF focus and leadership styles apparently began roughly five years ago, in 2014. Instead of coordinating with its member orgs worldwide, the IDF began holding its own conferences and events and was not ensuring that global members were represented in decision-making at the board level.

IDF President Professor Nam H. Cho responded to the accusations, by stating:

"We regret that some misunderstandings have led to some questions that are being voiced through journalists... The International Diabetes Federation remains, as always, committed to its role as a global advocate for diabetes and to its mission of improving the lives of people with diabetes by promoting diabetes care and prevention. Unity and cooperation throughout the global diabetes community are imperative to successful action on diabetes. We remain deeply devoted to achieving our objectives through continued collaboration with our members, partners and network of experts and volunteers, and we are very appreciative of their continued support and trust."

But that hasn't quashed concerns.

One global diabetes advocate who asked to remain anonymous, due to their role with another D-org trying to coexist with IDF, told us: "A lot about what happens next will become apparent at the World Diabetes Congress in Busan, Korea (in December 2019). Implosion is a possibility."

When asked who is taking the global leader role in diabetes is now, that same advocate said: "Really good question. There isn’t one anymore. IDF has been run into the ground under the current leadership and president, and is completely irrelevant. Think back to how strong it was when the UN Resolution was made in 2006. There’s no way that could happen now."

Several others we quiered from around the world noted similar concerns about IDF, and question its future going forward. One global advocate who's long worked closely with IDF shares this: "IDF was seen to be competing with the World Health Organization (WHO) and tried to set policies. But the IDF Board is no longer guaranteed to represent all of the regions, and now the inevitable has happened: (it has) a board top-heavy from one region. Suspicion, distrust began to set in. Its programs like Life for a Child and Young Leaders in Diabetes were losing their identity."

 

What Happened to Life For a Child (LFAC)

Notably, the popular Life For a Chld (LFAC) program with the mission to bring insulin to the needy so that "no child should die of diabetes" is no longer under the IDF's umbrella, after a split with the organization in September 2018.

LFAC had been an IDF program since its founding in 1999, and raised millions for providing insulin, test strips, and diabetes education to those in less-fortunate parts of the world. Even as part of IDF, it was housed in and run by Diabetes New South Wales in Australia since the beginning. Numerous LFAC fundraising campaigns included the US-initiated Spare a Rose, Save a Child initiative kicked off in 2013 that has raised roughly $180,000 to date.

In Fall of 2018, word is that IDF leadership tried to take over LFAC and change its focus. That led to a split, with the Australian-based org creating a new umbrella LFAC org that's supported by the original members as well as Life for a Child USA based in Florida. What makes this so confusing, though, is that IDF is still using the logo and branding, and that lifeforachild.org still exists -- even though it's no longer the official program, housed online at LFACinternational.org.

We asked LFAC leaders for input, but aside from confirming the split from IDF in late 2018, they declined to comment publicly on the IDF issues. We can't say this is surprising, given the upcoming World Diabetes Congress in December 2019 where leadership is expected to cast votes that could shape the IDF -- and international relationships and programs like LFAC -- going forward.

 

Rebuilding International Diabetes Cooperation?

The American Diabetes Association (ADA) was a founding member of IDF. When asked for comment, ADA leaders told us simply: "We value those relationships, and look forward to our continued involvement with our partners in activities focused on improving the lives of people with diabetes worldwide."

Meanwhile, a spokesperson for Diabetes UK told us, via email:  

“In 2018, Diabetes UK elected not to renew its membership of the IDF. Unfortunately, over the previous two years, working practices at IDF made it difficult for Diabetes UK to maintain its commitment to the organisation. A lack of consultation and communication with member associations about the IDF’s strategy and plan of action meant that, effectively, member associations had no say in its activities, despite funding the Federation."

"We tried repeatedly to engage IDF leadership on our concerns around systematic problems of good governance and transparency, and offered our support and involvement to help bring about improvements. Unfortunately, due to a lack of any progress on these matters, we took the decision in 2018 not to renew our membership as we felt that we could no longer defend this situation before our donors and supporters. We have also been very clear that Diabetes UK would be willing to re-join IDF once the issues around governance, transparency and member involvement are addressed.”

We certainly hope those repairs can be made.

In the meantime, it's good to see IDF at least continuing its traditional efforts for World Diabetes Day. The IDF did its annual unveiling of the latest statistics on diabetes worldwide, in the Diabetes Atlas 2019 edition.

From that document, no surprise: the type 2 diabetes numbers continue growing globally, and the IDF urges more prevention and general healthy living initiatives to curb that trend.

Per the IDF data: 9.3% of the world now lives with diabetes, with 50.1% of those being undiagnosed adults. Of course, type 2 accounts for 90% of all PWDs (people with diabetes) and the IDF notes that it's driven by a "complex interplay of socio-economic, demographic, environmental and genetic factors. Key contributors include urbanisation, an ageing population, decreasing levels of physical activity and increasing levels of overweight and obesity."

 

Diabetes on the Global Stage

Beyond IDF, the World Health Organization announced leading up to Nov. 14 that it would be taking some specific actions to access and affordability of insulin.

As part of a new pilot program, the WHO is allowing "prequalification" of human insulin, as a way to "boost access by increasing the flow of quality-assured products on the international market," and help provide lower and middle-income countries with greater choice at affordable prices. The program does this by evaluating certain human insulin products developed to ensure their quality, safety and efficacy. It then guides international procurement agencies -- such as the Global Fund, Gavi, the Vaccine Alliance, and UNICEF, and even various governments -- to make bulk purchases of the vetted medicines/vaccines/diagnostics/and other critical products at lower prices.

“Diabetes is on the rise globally, and rising faster in low-income countries,” said WHO Director-General Dr Tedros Adhanom Ghebreyesus. “Too many people who need insulin encounter financial hardship in accessing it, or go without it and risk their lives. WHO’s prequalification initiative for insulin is a vital step towards ensuring everyone who needs this life-saving product can access it.”

The program is one of several steps WHO says it plans to take in the coming year, to address the global diabetes burden. It's also planning to update diabetes treatment guidelines, devise price reduction strategies for analogue insulins in remote countries, and improve delivery systems and access to diagnostics. That worldwide org also says it'll be working with countries to promote healthier diets and physicial activity in order to lower people's risk of developing T2 diabetes.

We also have to recognize the work that UK-based T1International does advocating for access and affordability on a global stage. We commend T1I for its continued #insulin4all advocacy and workshops worldwide, especially in places like Syria and Fiji -- where respectively, 77% and 80% of people's average income is spent on diabetes costs. We can't help but think back to the early days of #insulin4all, when T1I had the slogan, "Put the world back into World Diabetes Day."

Indeed. We also recall nearly a decade ago, when at a social media forum the IDF leader at the time came to speak to us about insulin access and affordability in developing countries. It was then, as it is now, an OUTRAGE to see people dying as a result of lack of access to insulin.

We hope the spirit of international collaboration can be repaired and we can unite as a D-Community to address these big challenges. In the spirit of the Blue Circle and human camaradie, if nothing else.