News coverage of diabetes is often about the latest discovery or initiative, whether it’s related to research, advocacy or a new drug or device. But many of these developments are guided by an organization working diligently on a long-term plan behind the scenes.
Two of the most influential organizations in the world of diabetes are the American Diabetes Association and JDRF, both of which support research, advocacy and education to help their target communities. Diabetes Self-Management recently asked the leaders of both groups about the impact of their work. Here are their responses (edited and condensed).
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Diabetes Self-Management: How does your group make a difference in the lives of people with diabetes?
Research is at our core. Because we support all people with diabetes, our research efforts go across the spectrum from type 1 and type 2 to gestational diabetes, obesity, prediabetes, diabetes risk, and complications.
We funded nearly 300 scientists across 104 institutions in 2018. We have one of the most innovative programs, Pathways, to bring in scientists from all disciplines. So far, in just three years, these 32 scientists already have nine invention disclosures and patent applications. That’s an unbelievable return on investment.
We were founded as a research-based organization, but we also have an incredible group in Washington, D.C., focused on regulatory and legislative policy. We obviously have an insulin crisis in the United States. We’re fighting on so many fronts to provide people with affordable insulin.
When I started at JDRF, we funded almost entirely cure research, and any treatment research was focused on complications. Over the last 12 to 13 years, we’ve increased funding to develop devices and drugs to help people with diabetes management. Today, we devote about a third of our budget to treatment that goes beyond complications.
DSM: What do you see as your group’s greatest accomplishments?
Brown: We hold summer camps for young people with diabetes, to the tune of 6,677 campers just in 2018. We’ve served over 100,000 campers since 1949. At these camps, many young people say that, for the first time, they feel like they’re normal, like people get them. We’ve awarded over $500,000 in financial aid to send children to camp.
We recently won a 10-year lawsuit where we were fighting for truck drivers to be able to drive even though they’re living with diabetes. Prior to winning this case, these people were discriminated against, not able to do their profession.
Another recent win is the law in Colorado that caps insulin copays at $100 per month, regardless of the amount of insulin you need. As you can see, this is a very broad landscape in terms of what we’re advocating for.
Kowalski: We’ve seen such incredible evolution in continuous glucose monitoring (CGM) over the last decade. I was fortunate to be one of the co-authors of a paper in 2008 that put CGM on the map, opened up reimbursement for CGM devices, and made a business model that worked for manufacturers.
And here we are today with fingerstick-free CGM devices. I’m meeting families with kids that are barely fingersticking. To see JDRF play a pivotal role in this is something I’m proud of.
The JDRF artificial pancreas project also really stimulated the industry to get going on closed-loop systems. Our role in devices was originally controversial — people said, are we giving up on a cure? But I think that’s paid huge dividends in improving lives.
DSM: What does your group aspire to accomplish in the next 10 years and beyond?
Brown: While we continue to fight for a cure, we want to help people with diabetes and their families thrive. We’ve got to continue to fight for access to affordable healthcare, fight for the social determinants of health, give people the support and knowledge they need to manage this disease.
We have a unique partnership with the American Heart Association called Know Diabetes by Heart, to reduce cardiovascular deaths, heart attacks and strokes in people with type 2 diabetes. We launched the program a year ago, and we’ve already engaged over 5.9 million healthcare providers. I’m really proud of the impact we’ve had in a short period of time, and this partnership is just starting.
I think the future is about community. We’ve been studying this to understand how we can unleash the power of community to help people thrive and to do the kind of research that needs to be done in diverse and underserved populations. That’s where you’re going to see us lean in.
Kowalski: In the coming years, our big push is for disease-modifying therapies to prevent and change the course of type 1 diabetes. I think we’re going to see significant progress. Treatments are great, but they’re not why JDRF was formed.
For example, we’re focused on encapsulated stem cells. That’s not the holy grail of a cure, but I think anybody who could get a stem cell transplant and not take insulin for a year or two would consider it worthwhile.
The role JDRF has played in understanding the development of type 1 will drive preventive therapies, so that we don’t have future generations getting this disease. That’s something I feel is hugely important.