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Celebrating a full November – what I took away from our patient day at the FDA

Published: 11/10/14
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By Kelly Close

November is always a big month for diabetes, though I had no idea what we had in store a year and a half ago when I met with FDA Commissioner Margaret Hamburg. If I knew then what I know now… well, I would have done a happy jig first to celebrate our progress in having patients heard and then set my sights on helping the FDA upgrade its technology systems (more on that later). But let’s rewind. This work started nearly 18 months ago, when I was honored to speak with the great FDA Commissioner Margaret Hamburg in Colorado after she gave a couple of tremendous talks on public health at the Aspen Institute - including a discussion asking, "What Will Healthcare Look Like in 25 Years?" After listening to Dr. Hamburg, I went to speak to her right away about the problems in diabetes and how badly patients need help on SO many fronts. I told her a little bit about some of the challenges in diabetes from a patient perspective. Not skipping even a BEAT, she asked me whether patients would want to have more input at the FDA. At diaTribe, we leapt at the opportunity. After zigging and zagging a bit across the FDA trying to figure out how and where this could happen (with help from Dr. Helene Clayton-Jeter on exactly how exactly we could bring more patient voice to the FDA), we finally arrived at November 3, when The diaTribe Foundation led an unprecedented patient discussion on the unmet needs in diabetes with FDA leaders; we were joined by representatives from the ADA and JDRF as well.

What a day! You can read our full coverage in our diaTribe dialogue, where we cover the presentations from the FDA, from our nine amazing patient panelists, and from other diabetes organizations. Unfortunately, the FDA’s webcast system failed during the session due to the high demand from the diabetes online community (thus my wish for better technical support) – for those who missed the end of the session, you can catch up with our video of panel discussions here

We discussed many of the issues that I’ve thought a lot about during my work in the diabetes field, and even though I’ve written about many individual patients, I am still moved by their stories – my gratitude goes out to all those who participated in this meeting! I want to thank the diabetes community for tuning in to the webcast, engaging on social media, spreading the word, sharing your stories, and so much more. Each piece has been critical to the success of the day.

So much of the work that we’ve been doing has fed into this moment when we could finally engage directly with the FDA – I’m so honored to have been part of a monumental day for patient advocates. I’ll remember the day as a time where patients from an incredibly diverse and sometimes fractured community finally came together to speak with passion, focus, and urgency on the issues that matter to us the most – better management options and a better quality of life.

My favorite part of the experience was perhaps not even on November 3 at all. The night before our session with the FDA, I had the opportunity to have dinner with all of the patient panelists who traveled to the FDA with us. That night, we went around the table and all shared our personal challenges and experiences living with diabetes. We all chose one word we think connects us with diabetes, and I heard words like Complicated, Frustrating, Stressful, and Rollercoaster – all unfortunately accurate descriptions of diabetes management. But when it got to my end of the table, I was surprised to hear the word Hope springing out from my lips. Hope because this was one of the first times I felt patient voices were being heard in a real way. Hope because once they heard 30 million voices calling out, it was impossible to ignore. And Hope because this could be the start to a meaningful conversation for improving diabetes care for all of the patients out there. Telling the FDA about these pressing issues is only our first step, and the next is in creating solutions for those issues with a dialogue between patients, FDA, clinicians, educators, and industry. Stay tuned!

How fitting that we have much to celebrate during National Diabetes Month. In addition to the FDA meeting, there is our annual favorite Big Blue Test at the Diabetes Hands Foundation; the opportunity to Smash Diabetes and vent your frustration by crushing pumpkins; a very cool JDRF Thunderclap campaign for type 1 diabetes; and  our very own #dTGetsFit giveaway to encourage putting a little more movement into your day. What they all have in common is patient participation – truly something to celebrate. Patients are ready to engage. If you haven’t already, come and join the crew.

very best,

Kelly L. Close

For more information or for media inquiries, please contact the diaTribe Managing Editor, Nancy Liu, at 415-241-9500 or [email protected].

 

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