Next up in our series of interviews with the 2019 DiabetesMine Patient Voices Contest winners is Michigan-based diabetes advocate Erica Marie Farr. She was diagnosed as a young girl in 2001, and with two parents already working in healthcare, she's now pursuing a health-related career herself -- studying for her Master's of Public Health with a focus on health promotions.
Talking with Diabetes Advocate Erica Farr
DM) Hi Erica, can you start by telling us your diabetes story?
EF) I was diagnosed at the age of six with type 1 diabetes. At first, my parents and grandparents were convinced that I must have had the flu or a UTI. I was extremely lethargic, complained of back and stomach pains, and always thirsty. When I was taken to the doctor, a urinalysis was done to determine our best route of treatment and at that moment the doctor called my parents and advised them to rush me to Helen DeVos Children’s Hospital in Grand Rapids, Michigan, which was about an hour away from us at the time. On January 12, 2001, my life was forever changed.
Did you have any sense of how you got there or what was to come?
I have no family history of type 1 diabetes and only my paternal grandmother was known to have type 2. All I can remember is the vials of blood being drawn, I kept thinking there were so many, I was confused, and had no idea why I felt so bad. An endocrinologist was rushed to me at the time and my parents, grandparents, and myself were put into a conference room. In the room, we were instructed on how to give a shot to an orange and all the details my parents needed to bring me home. That endocrinologist, Dr. Wood, stayed with me until just recently when I started grad school. Dr. Wood saved my life. I was never hospitalized and my A1C was only around 10 at diagnosis. Thank heavens that my mother is a registered nurse and my dad was an EMT at the time. If it wouldn’t have been a family ordeal, I may not be here today to tell you my story.
Did your parents’ healthcare professions influence your career path?
Yes, I believe they shaped my notion that everyone is suffering from something. Growing up, T1D was not discussed as a bad or terminal thing. My parents always treated my T1D as something I needed to take care of to stay healthy and that nothing was wrong with me. In fact. to break the stigma my parents would celebrate my date of diagnosis with cake and a celebration every year. It wasn't an aliment I 'suffered from.' Our attitude was that I have T1D -- T1D doesn't have me.
Where are you in your studies at the moment?
I am currently an MPH (Master's of Public Health) candidate at Grand Valley State University with an emphasis in Health Promotions. I recently transitioned out of my position as a Development Assistant at the Michigan Great Lakes West JDRF Chapter. I am starting as an intern for the North End Wellness Coalition, which is a local group of individuals, churches, non-profits and community organizations that work to promote and wellness within local communities on the north end of Grand Rapids, MI. We share resources, and learn together to make the area as healthy as it can be.
Can you talk more about your work with that local JDRF chapter?
I was responsible for all outreach efforts and promotions of the local JDRF Bag of Hope program. As a patient, I was able to see the other side of clinical care and build lasting relationships with the healthcare systems in the area, endocrinologists, CDEs, Social Workers, and so much more. I loved the personal connection with patients sharing their stories with T1D, connecting through shared community needs.
We understand you just had a tonsillectomy performed. Any diabetes-related fallout from that?
Because of diabetes, I had to obtain medical clearance to have the procedure. Then we chose to have the procedure in a surgical center to decrease infection exposure. I did advocate to keep my Dexcom CGM and my insulin pump on, to let the anesthesiologist monitor blood sugars to avoid a hypoglycemic incident. Insulin levels were decreased as I was unable to eat since the night before the surgery.
Afterwards, I was unable to eat almost at all, so I had many low blood sugars even when insulin was stopped or almost completely turned off. I will admit, it was scary as pain medications lower my blood sugars and being unable to eat could have turned a low blood sugar into a medical emergency in minutes. My mother was thankfully able to stay with me after the surgery and because she's an RN, I was able to recover at home and not seek help from an ER or medical center.
Access and affordability seem to be our community's biggest challenges at the moment. Have you personally had any issues on that front?
I have had issues with Prior Authorizations to get insurance to cover what I need. The issue was documentation that I was still a type 1 diabetic... proving status of my diabetes after so many years!
Another issue I did and do experience is Non-Medical Switching. The experience that sticks out the most is during finals of my junior year in college, I was switched to Humalog insulin from Novolog after 15 years of use. I had to prove I was allergic to Humalog in order to be switched back to Novolog. Humalog seemed to work “slower” for me and not as short-acting, almost too thick for my insulin pump -- meaning doses were off and blood sugars were erratic. A stressful time in life such as college finals can cause blood sugar fluctuations on its own. I called my endocrinologist right away to report some stomach issues and to troubleshoot what to do next. At this point my endocrinologist put in an Emergency Prior Auth and was quite annoyed with my insurance’s decision regarding patient care.
On a brighter note, what's the most promising change you have seen in diabetes over the years?
Without a doubt, technology and addressing mental health. The technology that we have today, such as the Dexcom G6, would have made basal changes and 3am checks so much easier in my early years with T1D. Also, mental health, diabetes distress and burnout were not discussed when I was growing up. There wasn’t a name to episodes of absolute hopelessness and frustration. Breaking the stigma and fostering open conversation have changed the way patients and physicians explore care management plans.
What gets you excited as to diabetes innovations?
I really want to see fast-acting glucose develop. Micro doses of glucagon would be extremely beneficial for athletes, during an illness, after surgery, severe hypoglycemic incidences, and so much more.
What would you tell pharma / medtech industry leaders, if you could suggest what they could do better?
Consider the patient: what if you were in my shoes? Feel my fears and see my accomplishments. Things such as an effective insulin pump clip can make or break your day.
Also, help open up FDA approval for a range that patients can themselves for high and low BG ranges (on devices). For example on Tandem's Basal IQ system, the low setting is set that if I am predicted to go below 80 mg/dL, it will suspend insulin. However, I personally am fine at 80 and a simple fix to lower the standard to 75 would help me to avoid a rebound high glucose level. Insulin suspension is great for sleeping, but it isn’t the perfect formula for everyone.
What prompted you to apply for the DiabetesMine Patient Voices Contest?
I was encouraged to apply by a local pediatric endocrinologist at the Helen DeVos Children’s Hospital, Dr. Jose Jimenez Vega. I spent many wonderful years as a patient there, but I really got to connect to Dr. Jose through my time at JDRF. Part of my responsibility there was to coordinate the JDRF Type 1 Nation Summit of which Dr. Jose who was a committee chair and speaker. Dr. Jose has encouraged me to check out new technology, research new subjects in relation to T1D, and spread my wings in advocacy efforts.
Great! So what do you hope to bring to, and get from, your experience at "DiabetesMine University"?
I hope to speak to those in the diabetes sector and make a difference. I'll keep an open mind and answer all questions others may have about my experiences as a type 1 diabetic for over 18 years. I am extremely grateful for this opportunity to see and hear all about the innovations that have made my life easier and the advancements to come. I hope to network with like-minded individuals and provide education to them as well.
Thanks for sharing your story, Erica! We're super excited to include you in our Innovation Days this November.