In this year marking the 100th anniversary since the discovery of insulin, the World Health Organization (WHO) is all over diabetes. It’s leading a global initiative aimed at raising awareness, influencing policy, and listening to the life experiences of all people with diabetes (PWDs).
The org will kick off the launch with an online summit on April 14 that can be viewed on the WHO YouTube channel. The launch also includes a 2-day insulin-focused scientific symposium on April 15 to 16 at the University of Toronto, where scientists made their medical breakthrough discovering insulin back in 1921.
What makes this new WHO effort unique is that PWDs are at the center, helping to shape the focus and bring new energy to what’s seen by many as becoming a stale sense of international collaboration in recent years.
“What is different about this for me, is that I’ve been involved in many conversations where people and groups say they are going to do things, but nothing happens,” says diabetes advocate Cherise Shockley in Indiana, who has type 1 (T1D) and has been a leader in the community since founding the weekly #DSMA chat in 2010.
“With this one, it feels different. This seems like the change we’ve all needed and have been working toward,” she says.
The WHO is organizing
It all aims to address some persistent issues:
- Globally, health systems experience difficulties diagnosing and caring for people living with diabetes. Despite the discovery of insulin 100 years ago, many children, adolescents, and adults with T1D find it difficult to access insulin, as well as basic technologies like fingerstick blood glucose meters and test strips.
- Many adults with type 2 diabetes (T2D) remain undiagnosed. In North America alone, the
Centers for Disease Control and Prevention (CDC)estimates that roughly 7 million out of 30 million with diabetes don’t yet know that they are living with this condition.
- Even those who are diagnosed often cannot get essential diabetes and related medicines, and regular screening for complications.
“The WHO Global Diabetes Compact seeks to reduce the risk of diabetes and to ensure that all people who are diagnosed with diabetes have access to equitable, comprehensive, affordable, and quality management,” says WHO spokesperson Alena Stefanie Matzke.
- Resource hub. The hub will bring together in one package all WHO materials for the prevention and management of diabetes, both existing and new. This includes resources for treating and managing all types of diabetes, and on improving access to diabetes medications and technologies, particularly in low- and middle-income countries.
- T2D awareness. On the T2D prevention side, particular focus will be given to reduce obesity, especially among young people and those with prediabetes.
- Worldwide action targets. This effort will focus on presenting the global targets for improving diabetes care and outcomes under development, similar to the global HIV targets that the WHO published and Avert reports.
- Global diabetes price tag. The WHO plans to create a “global price tag” to quantify the costs and benefits of closing the gap between people who can access diabetes services and those who cannot.
- Policy influence. The WHO plans to support its members on this front, with technical guidance and tools to adopt evidence-based interventions to help prevent, diagnose, and treat diabetes. More on this front is expected throughout 2021.
- COVID-19 crisis. The continuing pandemic has had wide-ranging impacts on global health, including for PWDs. A WHO survey found that
49 percentof participants have reported either partial or complete disruptions to services for diabetes and related complications as a result of the COVID-19 pandemic. This global diabetes compact will directly and indirectly tackle that issue on several fronts, related to access as well as raising awareness in under-resourced parts of the world.
Following this year’s launch, the WHO plans to build on this collaborative and share what’s accomplished in 2023, at the United Nations when they address universal health coverage, as well as at another meeting on noncommunicable diseases in 2025.
Will this address insulin prices in North America?
In a broad sense, yes it will. But given the worldwide focus, it will go well beyond just the insulin pricing crisis in North America to address issues in low- and middle-income countries, according to a WHO spokesperson.
During this event, the WHO will unveil more details about what to expect throughout 2021. Some of that includes the plan for World Diabetes Day on November 14, marking the birthday of insulin co-discoverer Dr. Frederick Banting.
The Global Diabetes Summit has three segments, including:
- first segment primarily for governments, donors, nonstate actors, and PWDs
- second segment on operationalizing meaningful engagement of PWDs
- third segment for PWDs entitled “100 Years of Insulin: Celebrating Its Impact on Our Lives, “a 4-hour event organized by the University of Toronto
The second portion touches specifically on what PWDs can do to engage in the WHO Global Diabetes Compact and how they can get involved. That too can be viewed online at the WHO’s YouTube channel.
Then on on April 15 to 16, the WHO and the Canadian government are collaborating with the University of Toronto to host a followup 2-day Insulin 100 symposium, broadcast virtually around the world.
It includes a variety of speakers with prerecorded presentations, as well as live panel discussions and scientific abstracts looking at a plethora of diabetes-related topics, ranging from insulin use to COVID-19 research and diabetes metabolism and complications.
“The 100th anniversary of the discovery of insulin is a tremendous opportunity to review the impact of science on society. We’ll look at the current and future opportunities for innovation in the field of type 1 diabetes,” says Dr. Daniel Drucker, a well-known diabetes researcher based in Toronto who is chairing the symposium.
“We also need to redouble our global efforts to fulfill the original vision of Banting and colleagues, to deliver insulin and state-of-the-art diabetes care to all who require it, independent of their individual social determinants of health,” he says. “We will host the WHO as they unveil their Global Diabetes Compact for people with diabetes, and also hold a special session for people living with diabetes.”
Notably, the WHO collaborated with 120 individual patient advocates to discuss and start planning the Global Diabetes Compact’s focus, hosting conversations in October 2020 and a 3-day virtual conference in March 2021.
In addition, the global organization is working with pretty much every major diabetes organization around the world — including the International Diabetes Federation (IDF), JDRF, American Diabetes Association, Beyond Type 1, diaTribe Foundation, and T1International, to name just a few.
DiabetesMine talked with some advocates involved, from both developed countries and from smaller, under-resourced countries around the world.
In Pakistan, Sana Ajmal, PhD, executive director at the Meethi Zindagi organization, says this WHO initiative is important because it builds on years of work by advocates to get global leaders to include PWDs themselves.
“First and foremost, the WHO is beginning to recognize the voices of the diabetes advocates,” she says. “Many of us, especially in the low- and middle-income countries, had felt many times that our voices were not taken into consideration while the healthcare systems of the countries have difficulties accessing medication and quality care.”
This new effort by the WHO “was very encouraging for me,” she says. “It suddenly took away the exhaustion factor that often sets in with advocacy campaigns. Changes can be hard to bring about. I was thoroughly energized to know that somewhere, somehow, our voices were being heard and recognized.”
Her hopes include the WHO being able to address concerns accessing medication, not just for insulin but for coverage models that include test strips and syringes. Ajmal also wants to see equality addressed, bringing more diagnostic support and complication screening tests. Type 2s shouldn’t be left behind when talking about these access issues, whether it be to technology or tools or insulin, she tells DiabetesMine.
Elizabeth Pfiester, a fellow T1D who leads T1International based in the United Kingdom, also says this new WHO initiative is a welcome effort.
“It has been a long time coming, but being part of the WHO Consultation for People Living With Diabetes (a forum held in October 2020) gave many of our advocates hope that there are genuine efforts to meaningfully involve patients in crucial work to improve the lives of people with diabetes,” she tells DiabetesMine.
“They must treat people with diabetes as the experts that they are, including perspectives from those who are most impacted by the global insulin price crisis,” Pfiester adds. “After a promising consultation, people with diabetes want to see continued and earnest collaboration with these high-level initiatives so that they translate into grassroots-level change. We plan to hold them accountable and help them achieve that as much as we are able.”
In the United States, Shockley echoes that sentiment. She’s attended countless conferences and summits across the globe and has been pushing for international policy and advocacy changes for more than a decade now.
She believes that “this initiative has real clout, coming from the highly visible and respected WHO organization (especially given its spotlight due to COVID-19). That, as well as the WHO’s willingness to work with many D-advocates in differing geographies and socio-economic statuses, makes it different,” she says.
“Plus, there’s a plan and a path forward, with them not being willing to move forward unless they first hear from us all,” Shockley says. “They want to make sure we’re involved in the conversation, and not just making decisions for us without us being at the table. It’s a very humbling experience being a part of this.”
The fact that the WHO is taking a world view, compared to more siloed approaches — “a bunch of North Americans or Europeans sitting there and only talking about our issues” — can’t be overlooked, Shockley emphasizes.
“They’ve discussed everything from the cost of insulin and diabetes supplies to cost of overall care, to prevention of T2D, prediabetes and obesity, to gestational diabetes, health literacy, and a host of other issues,” she says — where patient voices haven’t always been included.
The WHO tells DiabetesMine that as of April 2021, they are developing an “engagement framework” to define how to operationalize the meaningful engagement of PWDs around the world.
“Learning from the insights and perspectives of people with lived experience will be central to the Global Diabetes Compact, and we will be seeking participation to co-create the various work streams,” a WHO spokesperson says.
For anyone wishing to follow their progress, these are the resources that will continue to be updated throughout 2021:
- a document about
“uniting around a common agenda”through the Global Diabetes Compact
WHO resource page on diabetes
You could say that the WHO actually comes to the rescue here, after early efforts by the IDF based in Belgium failed to create a sustained collaborative effort from all the key stakeholders. That org has a network of over 240 member associations in 168 countries and territories, which it now plans to assist in rolling out the WHO campaign worldwide.
The IDF notes that this global compact led by the WHO comes at a critical juncture, given the COVID-19 crisis and its economic impacts.
“This is a historical time. We have a chance to write a new chapter in the history of diabetes for the close to half a billion people estimated to be living with diabetes across the world, and the many more at risk of developing it,” says IDF President Andrew Boulton in the United Kingdom.
“Collectively, we must take the opportunity of the centenary of insulin to work together to ensure all people diagnosed with diabetes have access to equitable, comprehensive, affordable, and quality diabetes management — irrespective of geography or income.”