In the “who’s who” of diabetes advocacy, longtime type 1 and fellow blogger Melissa Lee is certainly someone who should be on the shortlist of people in our community to know about.
Diagnosed as a kid with type 1 more than a quarter-century ago, she’s from the the Dallas, TX, area and has worked professionally as a private voice lessons instructor. Of course, many of us know her best through her D-Advocacy efforts that include blogging at Sweetly Voiced, her leadership roles with Diabetes Hands Foundation, and eventually going into the commercial product side with Bigfoot Biomedical and now open-data organization Tidepool. We also can’t not recognize her incredible husband Kevin, who is a brilliant engineer who’s done some #WeAreNotWaiting work through the years and currently works at Bigfoot himself.
We’re proud that Melissa has in the past been a two-time selected winner of our annual Patient Voices Scholarship Contest, attending our annual Innovation Summit in California. She never hesitates to speak her mind and raising her voice for the betterment of our Diabetes Community, and today we’re thrilled to feature her story here at the ‘Mine.
DM) First of all, can you recap your diabetes story for those who don’t yet know you?
ML) I was diagnosed in 1990 at the age of 10, in a coma from DKA (diabetic ketoacidosis). I spent the ’90s on multiple daily injections with A1cs between 10 and 16 and started on an insulin pump in 2000. In 2008, newly married and desperate to have the kind of control necessary to have a safe pregnancy, my husband sent me to a link to DiabetesMine and, from there I discovered the Diabetes Online Community. Since discovering community support (and with it, so much information), I’ve managed to maintain an A1c in the 5-7% range for the last 6 years and I have two beautiful children. I’m now an advocate for people with diabetes and a much more informed patient than I used to be.
This will be your second time at the Innovation Summit… what did you get from the 2013 event?
That year’s Summit was quite a turning point for me. Though I’ve always been vocal (in more ways than one), it wasn’t until the Summit that I realized just how much the patient voice had been missing from some sectors of the diabetes sphere. The Payers Panel with insurance executives discussing their specific challenges and concerns was — as anyone who was there will recall — enlightening and (ahem…) contentious. I was among a handful of rabble-rousers who found they had quite a bit of perspective to share. It was an amazingly heartfelt, candid open forum and I will never forget the conversations that came out of that opportunity, including the one I had on the long flight home to Dallas seated next to one of those very same insurance executives!
You’ve been pretty active in the Diabetes Hands Foundation, especially in the past year… what prompted that?
When I left the Summit last year, I started a campaign to raise money for the Diabetes Hands Foundation, walking 50 miles in five weeks and producing some music videos along the way. I believe passionately in their mission that no one with diabetes should ever feel alone. I spent nearly 20 years doing this all alone and my control suffered — not to mention my spirit. I will take over the role as Chair of the DHF Board in 2015.
Melissa’s first video, Treat More Moderately
Melissa’s second D-Parody video sung to a popular tune from the animated movie, Frozen!
She’s also released this parody, So High Today, based on the song “So Far Away.”
Fun stuff, and what a voice! What else have you been up to?
Besides my work for DHF, I’ve also been doing some writing for A Sweet Lifeonline magazine, syndicating some work for Diabetes Daily, and I occasionally even get a chance to write at my own blog Sweetly Voiced. I’ll also soon be launching a new blog focusing on the challenges of raising a child with Celiac Disease and Sensory Processing Issues.
What do you think’s changed in the D-tech landscape, since the last Summit?
The biggest change in the tech landscape has been the explosion of the #WeAreNotWaiting campaign. Patients are not waiting for device companies to provide solutions for reviewing their data. The CGM in the Cloud Facebook group now has over 5,000 members. People are rigging up their CGM devices to send their data to second screens, allowing parents to remotely monitor their children at school and sleepovers, allowing spouses to check in with them when one is traveling, etc. The energy and momentum of the movement has been incredible.
The established device companies aren’t too far behind, either. The announcements from companies this summer have been groundbreaking and somewhat surprising — companies announcing partnerships with Tidepool, open API, next-gen devices with interoperability, etc. It is an exciting year to be following diabetes technology.
Have you any personal experience with #WeAreNotWaiting or diabetes data hacking?
My husband Kevin designed his own app that sends push notifications to his Android devices and alerts him at work with my CGM information without a lot of the extra steps required by the current popular versions. He says that app is compatible with the work the CGM in the Cloud group is doing, and it’s designed to complement it. It fills a different need. Watching him (and all of these parents and patients) put their coding skills to work to open up how I retrieve my data has been inspiring.
How do you think all of that will influence this year’s Summit?
Last year, it seemed as though the device companies were shifting in their seats a bit, worrying about what we might do as patients with this unprecedented access to their protocols, worrying about intellectual property rights, FDA, competition. This year? I think everyone will be bubbling over wanting to talk about the progress that has been made on each front. Each company will be eager to declare how they’ve opened their access for patients and providers. I expect it to be a different — and positive — conversation.
This is so great, Melissa! Thanks for being inspired to participate again. Stay tuned next week for an interview with our other returning patient advocate, Christel Aprigliano!