What's Still Missing in Diabetes Advocacy?

By Kelly Close and Adam Brown

[We originally guest posted this article earlier this month on Sanofi’s Voices on Policy Blog.]

Recently, Sanofi’s Partners in Patient Health Summit gathered a wide range of diabetes experts to discuss patient access and quality care. These issues have never been more pressing, as the costs of diabetes and prediabetes have ballooned to $882 million per day ($10,211 per second!), at the same time our country copes with nearly 5,000 new cases of diabetes every 24 hours.

Breakout sessions were the day’s highlight, providing attendees with blank whiteboards to brainstorm what our community should be working on. There were many ideas and a fair level of agreement on certain issues – the need for affordable therapies, more patient representation in decision-making, wildly misaligned incentives, and little public recognition that diabetes is a problem. But it was also clear that our community is quite fragmented, and siloed to boot.

While important individual initiatives do get attention from different organizations – the American Diabetes Association (ADA) is working on diabetes in schools, JDRF is tackling Continuous Glucose Monitoring (CGM) in Medicare, the American Association of Clinical Endocrinologists (AACE) is working to build a National Diabetes Commission – there is little collective advocacy agenda.

It starts with one simple question: what matters MOST to our community?

- Making drugs and devices more affordable and accessible?
- Building relationships with payers? Making sure Congress sees why it should be alarmed?
- Increasing diabetes research funding?
- Bringing care to underserved communities?
- Addressing the 86 million Americans with prediabetes?
- Validating peer and online support?
- Medicare coverage of CGM?
- Something else?

And once we decide what’s most important – a tall order! – who is accountable for results? Ideas are easy – execution is hard. And that is the biggest challenge for the diabetes community, since no one is coordinating these agendas right now. Too often, we come together, brainstorm ideas, and then leave to go back to our day jobs. It’s a reasonable question – how can we approach collective work when virtually all organizations are short on time for their own priorities?

We’d love the diabetes community to think about whether (a) dedicated full-time individual(s) is possible to bring together the many organizations, understand the gaps, and prioritize what we should be working on as an advocacy community. Then, we need a plan to tackle it. This is not part-time work – as we say at diaTribe, “Consensus is time consuming.”

Our day at the Partners in Patient Health Summit reminded us of the passionate advocates in our community, of all the things we can agree on, and of the dramatic potential to help patients with our collective will. We salute Sanofi and thank them profusely for bringing us together and being the source of the brainpower in the room that was shared. And now, there is work to be done. We are fragmented; among our own efforts as two individuals with diabetes, we can acknowledge that our communication is spotty, last minute, or absent, and we know that it is hard for many to sustain theirs. We’d love to explore organization toward providing collective support for our efforts as a community. While the problems in diabetes are big, they are also addressable. Some are even solvable! And where there’s grey area, we can experiment and try new things at a small scale. Now, we just need to get started.

Sanofi provided support for our travel, lodging, and meal expenses at the Partners in Patient Health Summit.