Continuing our series of interviews with the 10 winners of the DiabetesMine Patient Voices Contest that were announced in June, today we’re featuring none other than long-time diabetes blogger and advocate, Sara “Knicks” Nicastro, who was diagnosed with type 1 diabetes at age 21. Sara lives in Florida and works in higher education administration.
In her contest video, Sara discussed her thoughts on device personalization, like what’s offered by many smartphone apps these days. We talked with Sara about those thoughts, plus what else she’s got on her mind leading into the DiabetesMine Innovation Summit at Stanford University in November:
Can you start by sharing your diagnosis story?
I was originally misdiagnosed with type 2 diabetes at the age of 21 when I went to urgent care with a kidney infection. I was given a meter but no medication or diabetes education by my primary care physician. Ten months later I was in the emergency room with severe DKA and accurately diagnosed with type 1 diabetes.
There were many times that my diagnosis and treatment were mismanaged. I was sent away in DKA with a post-it note for an endocrinologist by the same primary care physician who missed my initial diagnosis. When I landed in the emergency room that same night, the endocrinologist on call said that I would not have made it to the appointment that was scheduled four days later. With the amount of time that I spend online related to diabetes now, I can’t believe that I didn’t even think to google my symptoms at any time during my misdiagnosis. The main thing my experience taught me is that I have the ultimate responsibility to manage my diabetes.
You are a long-time diabetes advocate. What is your advocacy mission?
There are two main aspects of my diabetes advocacy and I think they are intertwined with each other and equally important. I am not someone who fights against every inaccuracy written about diabetes in the media. I don’t usually talk about the latest research and technology or the current battles with the FDA. In the Bible, the Greek word used for advocate means someone who defends or comforts another person. Defending and comforting others are the two main areas in which I focus my advocacy.
When people are diagnosed with diabetes, especially as adults, they may feel that their life has to change. When I share my life and the fact that I do not let diabetes stop me from doing what I want to do, I hope that I am comforting them in the fact that they can continue to live the life they want to live as well.
You’ve also traveled internationally as an advocate…
Living my life with diabetes has brought me to Haiti twice. Those trips really made me aware of the struggle for people with diabetes around the world. I have lived without insurance and wondered how I was going to afford my insulin, but that is nothing compared to the struggles of people living with diabetes in many countries around the world. I visited a clinic on my second trip where they had never seen someone with type 1 diabetes. When I asked them why, they shared that it was because the people were not living long enough to be seen. If I have any voice at all, I will continue to advocate for people with diabetes around the world. No one should die because of lack of access to insulin and other life-sustaining medications.
In your video, you talked about personalization of medical devices. Why is that so important?
Because a medical device isn’t helpful if no one is willing to use it. For example, I have had diabetes for almost ten years and it has only been in the last few months that I started tagging my pre and post meal blood sugar results. I now tag my results because the meter I use makes it easier to do it than not to do it.
One of the reasons I chose to use an insulin pump was because I live an unpredictable lifestyle. I don’t want a medical device to decide what time of day is before or after a meal. I also don’t want a medical device that requires any extra steps. I already have to take time out of my life to manage my diabetes, so the perceived benefit has to be extreme for me to be willing to add anything else. Most of the current devices and products on the market are out of touch with the needs of people living with diabetes and the desires we have for our management.
As one of our contest winners, you got a new iBGStar glucose meter. What do you think of that device?
I really like it. The size of the meter is amazing. Much like most people with iPhones, I carry my phone with me everywhere. It would be nice to carry my meter around just as easily. Sanofi even has a new case available that holds your phone and the meter together. However, as of right now, my insurance does not cover the strips at any level. I cannot afford to pay full price for my strips. Because my insurance does not offer any coverage, my understanding is that I don’t qualify for the Star Savings program with a guaranteed co-pay. I love that this meter takes such a large step towards the device integration, but it is something I cannot afford right now.
What are you most excited about going in to the DiabetesMine Innovation Summit?
One of the most exciting aspects of the Innovation Summit is that it connects users to designers and other people who can actual take the voices of the users and make a difference for future products.
“It is frustrating to complain about what is lacking in diabetes technology, but it is empowering to feel like I can do something to change that.”
— Sara Nicastro, on participating in the DiabetesMine Innovation Summit
What would you most like to see the Summit achieve?
I hope the Summit makes it easier for all the parties interested in diabetes care and management to collaborate with each other. By actually putting us all in the same room it should remove some of the perceived barriers and allow us to really move forward on the projects that will simultaneously help people living with diabetes and benefit the designers and manufacturers.
Thanks Sara. We love your definition of “advocate” and look forward to hosting you!