Patient Voices Winner Christel Aprigliano: Our D-Community's (Un)Advocate

An Interview with Christel Marchand Aprigliano

DBMine) First of all, can you share the start of your story with diabetes?

Christel) I was diagnosed at 12 after having a virus. While I intellectually understood what the mechanics of diabetes entailed, I didn’t entirely grasp the emotional roller coaster that I was strapped into without my permission. It took years for my mind to get on board with what I needed to do to stay healthy and live well with this disease.

How did your DiabeticFeed podcast first materialize way back in 2004?

DiabeticFeed came about when I complained to my then boyfriend (now husband) that there weren’t any podcasts about diabetes. His response? ‘Well, then, let’s do something about it.’ He produced it and I researched and interviewed people. While we loved to do it, my career and travel made it difficult to keep doing consistently. Back in 2005, the DOC didn’t exist as is does now. I’m grateful for doing DiabeticFeed, because it connected me to other people with diabetes who have since become close friends.

Aside from diabetes, what else should we know about you?

I’ve lived in three countries (Canada, Germany, and the U.S.), speak four languages poorly (French, German, Italian, English), have an inquisitive two-year-old daughter, and an incredibly supportive husband. Professionally, my background is in sales and marketing, with a passion for non-profits. Before accepting the position of full-time activities planner for my kid, I was a Director of Membership for a large international non-profit organization. I write for fun these days, because I’m certainly not getting rich off my words. Once my daughter is older, I plan to continue my advocacy work for the diabetes community until diabetes is something that we ‘used to have.’

You’ve been up to a lot these days… Give us the rundown of what you’ve got going on?

The more you become involved in the diabetes community, the more you want to do. I’ve spent the past year looking at where there are gaps for resources and information and then have attempted to fulfill them. In January, I developed two things: a single page where people can review U.S. financial assistance options for diabetes supplies/medications and a comprehensive Diabetes Conference calendar. In May, I added a new conference to that calendar: The Diabetes UnConference, with the first-ever one set for March 2015 in Las Vegas.

I spent Summer 2014 traveling to the ADA (American Diabetes Association) conference, FFL (Children with Diabetes Friends for Life) event, and the AADE (American Association of Diabetes Educators) annual meeting, taking the pulse of diabetes research and searching out new products and devices. And because I’m passionate about how our community can make an advocacy impact with the right tools, I’ve created “Two-Minute Diabetes Advocacy” on my blog, which gives everyone an overview of what each of us can do in less than two minutes to share our thoughts with the government.

All this while running around after an incredibly active three-year-old… I’m deliriously happy and exhausted!

What exactly is this new Diabetes UnConference you’re organizing?

Think “Diabetes Camp for Adults,” but we can’t roast marshmallows over an open campfire and there are no bugs. (The Flamingo hotel in Las Vegas where it’s being held frowns on both.)

This has been a dream of mine: to bring adults with type 1 and type 2 diabetes together to talk in a safe environment about living with diabetes. Most conferences are for medical professionals, and even those who do a fabulous job providing support for certain segments of the diabetes community don’t allow for type 1 and type 2s to learn from each other and grow as ONE community, not separately.

We’ve received tremendous support from sponsors, who recognize that this is something that has never been done — and they want to help. As I told the community on Labor Day, we’re also offering scholarships to The Diabetes UnConference! (Editor’s Note: This is the final week for those scholarships, so be sure to apply before Sept. 30!). There are other surprises, too, and the best way to get the latest is by following us on Facebook or signing up for the event newsletter.

What diabetes advocacy have you been involved in?

My eyes were opened last year. I always thought: “I’m just one person. I can’t make a difference.” But then advocate Bennet Dunlap showed me what bringing the community together can do and I’m proud to have been involved. This community is a force to be reckoned with when we raise our voices as one, and this has been proved time and time again with initiatives like StripSafely and #WeAreNotWaiting — all grassroots movements that are motivated by one thing: us.

The federal government is beginning to recognize that our community will do what it takes to ensure our safety and access to the tools, devices, and resources that we need. Whether it’s commenting on dockets or meeting with Congress or raising awareness in other ways, I am in giddy awe of our community and what we can do together.

How do you think the DiabetesMine Innovation Summit can help with these advocacy efforts?

I came away from last year’s Innovation Summit with a better understanding of this: device manufacturers who attended can help us achieve our advocacy goals; they’re not the “bad guys” that some individuals believe they are. And, of course, that there are individuals and groups (like Tidepool!) that are working outside the box to help us as well. We need to support them all through our advocacy efforts.

This year’s Innovation Summit will hopefully unveil even more ways we can work together.

What would you most like to experience and bring to the DiabetesMine Innovation Summit?

The opportunity to see ‘what’s next’ in diabetes technology and discuss my thoughts from a user’s perspective is intoxicating. I’m a tech-junkie and with my dependence on diabetes technology and innovation to keep me alive, it’s all the more important to learn all I can. Some of the other PWD participants have eye-opening concepts that I would applaud being put into immediate research and development, so I’d love to see the genesis of these projects happen at the Summit.

What do you think has changed in the diabetes landscape recently?

This year has been one of connection: devices connecting to each other in new ways have been submitted for FDA approval, Tidepool has received their 501(c)(3) status and are connecting with many groups and device manufacturers who share in their vision of open data for real-time monitoring, and Nightscout/DIY groups have allowed families to breathe a little easier with the ability to connect and view Dexcom results remotely. And the Bionic Pancreas? Diabetes tech that keeps our blood sugars in range with minimal (if any) human intervention? I’m a huge fan and supporter!

Ten years ago, these technologies didn’t exist. They were all just dreams. Now these dreams are becoming reality. And all of the dreams and innovation comes from the personal passions of the people involved, which is what makes me all the more excited for this year’s Summit.

How can this kind of advocacy potentially affect your life and the lives of other PWDs?

While a cure would be wonderful (whatever your definition of cure might be), until that day comes, we rely on technology and industry innovation to keep us healthy. To listen, learn, and share what happens is my goal, perhaps inspiring others to become more involved with the voice of the user point of view.

Thanks, Christel. We love all that you’ve been doing, and can’t wait to see you again in November!