We have reached the final interview in our lineup of the 10 winners of our 2017 DiabetesMine Patient Voices Scholarship Contest, announced this past summer. They're the folks who will be joining us on scholarship for our annual DiabetesMine Innovation Summit in mid-November at Stanford School of Medicine, which brings together key movers and shakers in the diabetes industry, regulatory, medical, tech and patient advocacy communities.
Today, we're talking with Karl Rusnak in Ohio, who was diagnosed with type 1.5 about eight years ago just after finishing college. He's a 30-something who works as a non-profit communications consultant, who is admittedly pretty new to the diabetes advocacy scene -- as he says sharing his health story wasn't something he was always comfortable with. But he's jumping into the deep end now on a number of issues, particularly when it comes to innovation on diabetes access and affordability.
Without further ado, here's Karl...
An Interview with T1D Peep Karl Rusnak
DM) We like to start by asking everyone their "diabetes story." Can you share yours?
When I was 23, on Labor Day weekend 2009 shortly after I graduated from college, I went to the doctor for the first time in a few years to get a checkup. I had been feeling a little off at that time, but couldn’t put my finger on what was going on. My doctor ran some blood tests which didn’t raise any red flags, even though when I looked back at them later, I could see my A1C was slightly elevated.
A month later all the classic symptoms of uncontrolled diabetes were clearly evident: Unquenchable thirst, waking up five times a night to urinate, lethargy, etc. When I went back to the doctor my A1C was over 10 and I was referred to a great endocrinologist who ran additional tests. My doctors were appropriately skeptical of a type 2 diagnosis and wanted to put me on insulin right away, although it quickly became apparent that I didn't need it at that time.
And then it became evident that you were a type 1?
Today I usually tell people I’m type 1 since I’m 100% insulin-dependent and don’t have insulin resistance, but I actually tested negative for most of the antibodies associated with T1D. My treatment has been more like a Type 1.5 or LADA individual. Pills worked briefly, but I’ve now been on insulin for a number of years.
How did that affect you, not having a clear diagnosis at the time?
Not fitting neatly into a category used to bother me a bit more and probably led me to be resistant to going on insulin for longer than I should have.
Diagnosis was a big shock since no blood relatives were diabetic at the time I was diagnosed, and I didn’t really know anyone in my age bracket who had been diagnosed, either. I was lucky, however, that my mother is a registered dietician, so I grew up reading nutrition labels, which certainly made things easier. Perhaps ironically I think being diagnosed made me healthier overall as it sort of forced me to dial back some bad eating habits. I got more active, lost a little bit of weight, and generally put a better focus on my health.
Can you tell us about your job running communications for a local non-profit?
Right now, I am employed by a 501c4 campaign committee formed specifically for getting an anti-puppy mill initiative on the ballot in Ohio. I am here in Columbus, as I came here to attend Ohio State University and despite previous plans, never left.
In the past, I’ve worked in various capacities on campaigns, political consulting, advocacy communications, and so on. Basically, I’ve tried to connect my career with things I care about, and that’s taken a number of different forms. I haven't had the privilege to work on anything healthcare or diabetes-related yet, but that's definitely on the short list of things I'd like to be involved in.
What kind of diabetes activities or advocacy do you have your eye on?
This is actually something that’s fairly new to me. For a long time, I’ve been pretty quiet about my diabetes, even with people I’m close to. Despite being outspoken on nearly any other issue I care about, I’ve largely seen diabetes as something I have to personally overcome to get by and have shied away from getting involved. I’m still trying to figure out where I feel most comfortable within the diabetes advocacy community.
Wearing diabetes on your sleeve can be a bit scary at first... how has it been for you, starting to open up?
Family and friends have been overwhelmingly supportive. My girlfriend, Sarah, has been encouraging me to be more open about having diabetes, and generally I think doing so has made life better and more interesting. Like every person with diabetes, I've encountered some people who are quick to share their foolproof method for reversing diabetes, or their horror story of an uncle who lost a limb, but generally people are pretty supportive.
Have you been able to find support when you've needed it?
Diabetes can be an isolating disease. In other areas of life I make an effort to be involved in other communities that are important to me: local politics, bicycle advocacy, professional organizations, and so on. These groups all allow me to connect with like-minded individuals and spur innovation through shared ideas. However, I rarely meet any other type 1 diabetics and my main in-person connection to innovation in diabetes care is my doctor. This leaves online communities the only substitute for in-person interaction, and I would relish the opportunity to join a conversation in person with others who face similar challenges.
But shortly after diagnosis, I dove into diabetes forums and didn't like what I found. They seemed to be full of no-carb evangelists who put perfect readings above all else in life. Since then I've found diaTribe useful for keeping up with new tech and research, and although I'm not generally a Redditor, I've found the diabetes subreddit to be a good community.
And of course you found us at DiabetesMine, and applied for a scholarship to our Summit...?
Yes! Besides the obvious benefit of learning about new ideas and innovations from people who spend a lot of time thinking about these things, I’m just excited to be in the room with other people with diabetes. I so rarely meet anyone in person who deals with the same day-to-day challenges. I think a lot of good ideas come from face-to-face interaction.
What are some of the biggest changes you've noticed in care since you were diagnosed?
I’ve been really excited by changes that allow for better control while living a fairly normal life. When I could finally link my Dexcom directly with my iPhone, I was overjoyed. I think user-friendly design has finally started to be a consideration in diabetes tech, which isn’t just about things that look cool. A well-designed meter case makes it a lot easier to take a walk with all of my necessary equipment, and that creates a better quality of life overall.
On the other hand, important items are just as expensive and nearly as hard to get as they’ve ever been. Despite data on how access to things like insulin pumps improve outcomes, there are still massive hurdles whether they’re financial or put up by insurance companies. Insulin is still really expensive. A lot of insurance companies won’t cover enough test strips to get an accurate picture of your blood glucose. It’s hard to get excited about tech innovation when there is a massive Facebook group where people basically beg for supplies.
What do you think are the biggest challenges right now in diabetes innovation?
I think they are all related to access. Whether that’s access to the best tech, consistent and affordable access to insulin, or access to education about how best to manage your own diabetes, these things aren’t available to everyone.
The fact is that innovation has come far enough that if you’re a person with resources you can access these things and live a pretty good life with diabetes. The divide is pretty stark, though, if you don’t have means. I’ll read blogs and tweets about new pump features all day every day, but I think the real innovation will come in how to improve access for all people.
If you were to think outside the box to problem-solve a specific healthcare need in diabetes, what would you suggest?
Over the past 8 years, I’ve had five different insurance plans and have lost countless hours just trying to navigate these plans to get the treatment my endocrinologist and I decide is right for me. Some of the plans have had diabetes treatment programs that allegedly help you manage your diabetes, but these are usually focused on things like diet and exercise, not streamlining the process of getting approval for the out-of-formulary strips that actually fit my meter. There has to be a way to put expert advocates in place to make this process* easier. Diabetes has taken too much of my brainpower already without worrying about whether I can enact the treatment program I’ve decided on with my doctor.
And thank you Karl, for sharing your story! We look forward to hearing more of your thoughts at the Innovation Summit.