Diabetes Advocate and Budding Doctor Tackles Access Barriers

Talking with Diabetes Advocate Hannah Carey

DM) Hi Hannah! First off, how did diabetes enter your life?

HC) I have had type 1 diabetes for almost two years. I was diagnosed when I was 26, which is actually the age my father was when he was diagnosed. I had the classic symptoms of T1D and early stage diabetic ketoacidosis, including excessive thirst, urination, rapid weight loss, exhaustion, and weakness. I was waking up four times a night to chug water and use the bathroom, and ultimately went to my primary care provider because I had lost about 10 pounds in one week. When my doctor checked my blood sugar at that first visit, I remember it was 464 mg/dL and he explained to me that I would need to immediately go to my nearest emergency room. It was definitely a frightening time in my life, but thankfully I had a great medical care team and personal support system.

Interestingly, my father was diagnosed at the same age as me (26) and has now had diabetes for over 30 years. I was not raised by him, so I actually knew very little of type 1 diabetes until I was diagnosed. At that point, he and I started talking more about his personal diabetes management and things that have worked for him. He is very active and has finished multiple marathons and an ultra-marathon, all with diabetes and MDI (injection therapy), so that was encouraging for me to know from the get-go. His biggest advice initially was to get a Dexcom CGM as soon as I could, and fortunately my new diabetes educator set me up with a loaner Dexcom within just a few days of my hospitalization.

Do you and your Dad share any diabetes strategies?

We approach our diabetes management similarly, I think in large part because our personalities are quite similar. We both are logical, analytical, and methodical, while also finding regular exercise to be an important part of our health and well-being even before we had diabetes. I have been able to bounce ideas off of him regarding the specifics of how he plans his exercise, meals, and insulin dosing as someone who problem solves and strategizes the same way as me.

From my end, I have shared with him new information regarding technology, such as insulin pumps and the InPen (new connected insulin pen). While he hasn’t tried those out yet, he did take my suggestion to use a Frio insulin cooling case when he was on a backpacking trip. I have gone on several multi-day backpacking trips since having diabetes, and the Frio has been great!

What do you personally use for D-tech and tools?

I use the Dexcom G6, Tandem X2 pump, and a OneTouch glucometer. For the first year of having diabetes I was on multiple daily injections and used an InPen for part of that time.

Tell us about your career path…?

I am currently a first-year medical student at Loyola University Chicago Stritch School of Medicine. Before this, I earned an undergraduate degree in Family and Human Services from University of Oregon and a Master of Public Health from Boston University.

Which branch of medicine are you focusing on?

I am interested in internal medicine, but I don’t know if I want to sub-specialize from there or pursue a different specialty altogether. I do know that I want to work with underserved communities such as those of lower socioeconomic status. I have a background in public health and intend to work toward increasing access to quality medical care in these populations as well. I am definitely looking forward to my clinical rotations during medical school to help me make this decision! I am actually going to start shadowing a provider at Loyola who specializes in diabetes starting next week, so I can get a taste of endocrinology from the provider standpoint rather than patient.

Have you experienced any access or affordability issues related to diabetes yourself?

When I was diagnosed, I was on Oregon Medicaid, called Oregon Health Plan (OHP). I am very grateful that I paid zero co-pay for all of my insulin, pump supplies, and Dexcom supplies. Access issues came into play when I needed more test strips and needles than were initially prescribed to me. At first, the medical assistant I spoke to on the phone informed me that OHP would not cover more than four test strips a day.

Because I was already familiar with how insurance prescription coverage functions, I knew that I could ask for the request to still be sent through to my insurance and, thankfully, I was able to get the number of test strips I needed. My insulin pump of choice was and is the Omnipod, but after multiple appeals, including two phone hearings, I was ultimately denied coverage. My second choice, the T:slim, is covered by OHP so that is the pump I currently use.

Before moving to Illinois, I did not know if I would qualify for Medicaid or if it would cover Dexcom. For the past six months, I have worn my Dexcom sensors past their 10-day wear time and filled my insulin and test strip prescriptions as early as possible in order to create a back-up supply in case they are not well-covered by my insurance here in Chicago. Even before I knew I was moving to Illinois, I still saved my supplies for fear of changing insurance coverage.

That’s rough. But access roadblocks notwithstanding, what gets you excited as to diabetes innovations?

I am really excited about Looping! Especially the new DIY Loop for Omnipod and Tidepool’s support of Medtronic users on Dexcom, and Tandem has a hybrid closed loop system on the way as well. I love the Basal-IQ feature on my Tandem T:slim pump, but the addition of an insulin dosing algorithm would remove much of the guesswork and mental burden involved in adjusting basal rates and monitoring blood sugar levels constantly. While they are not perfect systems, I am definitely interested in trying it out.

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Aside from the devices, what things have helped you cope with diabetes since your recent diagnosis?

There is significant value in connecting people with diabetes to other people living with diabetes, particularly those who have found ways to be successful with their diabetes management. Living with type 1 diabetes can be a very isolating experience since it is “invisible” and little is known about T1D in the wider community.

For me, fundraising for and attending the annual JDRF One Walk four months after my diagnosis was such a positive experience! I knew that the majority of people there understood the daily challenges of living with T1D, wouldn’t think my Dexcom was a nicotine patch or that I was texting when actually checking my pump or CGM readings, and were there to support people like me. It was a day of celebration, rather than sorrow. Later, I joined Type One Run at a point when I was feeling disheartened and frustrated with the frequent low blood sugars I experienced on runs.

Just two months later I had completed my first half-marathon, which I attribute to meeting other T1D runners and hearing about the techniques that worked for them. While I do think seeing a healthcare provider remains a critical part of diabetes management, these personal connections with other T1Ds have helped me to thrive with T1D and have a more positive outlook and belief in my ability to live a life that is not limited by this disease.

You’ve been vocal about the fact that patients don’t get enough information upon diagnosis. What’s an example of that?

When I was diagnosed, I wanted to know the details of the biochemistry of T1D and, for example, what processes occur at the cellular level when I perform aerobic and anaerobic exercise or consume alcohol, but this information is incredibly difficult to find online or in books. In addition, I wanted to know if there was research showing the differences in complication risk for a PWD (person with diabetes) with an average hemoglobin A1C in the non-diabetic range versus 6.5 versus 7.0, for instance, but to my knowledge this research does not exist.

Diabetes stakeholders need to make detailed information more readily available to PWDs, which includes addressing the issue of inadequate research focused on complications for type 1 diabetics relative to specific frequency of hypoglycemia events and complication risk for more narrow A1C ranges and standard deviations, especially now that we have continuous glucose monitoring.

What else would you tell medtech industry leaders, if you could?

I would like industry leaders and healthcare providers to understand that there are many contributors to successful diabetes management beyond tight glycemic control, and there are many steps to achieving optimal blood sugar levels. For example, the default method of an endocrinology or diabetes education check-up has much room for improvement.

While analyzing my daily Dexcom logs is highly important, only focusing on the numbers leaves out many of the other aspects of a person’s diabetes management, such as attitude, diabetes distress, connections with other PWDs, self-efficacy, adequate supplies, insurance issues, nutrition, and often the simple recognition of the mental and emotional burden of living with diabetes. Diabetes technology and care needs to accommodate for all the aspects of living with diabetes, rather than just the blood glucose levels and technology access.

Excellent point! So why did you decide to apply for our DiabetesMine Patient Voices Contest?

I would like to learn from conference attendees while also sharing my personal experience with T1D in an effort to better support people living with diabetes. I have a unique perspective as someone with a graduate degree in public health, years with Medicaid as my health insurance and multiple insurance appeals for diabetes technology, and a medical student with an interest in patient advocacy and increasing access to care.

Diabetes technology has changed my life for the better, including increasing my safety and improving my health. At the same time, I feel there is much to the patient experience that our healthcare providers and other diabetes stakeholders may not yet understand. I spearheaded my own acquisition of diabetes knowledge and am interested in making this information more accessible to PWDs, both type 1 and type 2. I have noted consistent weaknesses in the way we are taught about diabetes, diabetes management, and the utility of technology. I am passionate about addressing these issues in healthcare and support, particularly for populations with increased barriers to care, and would value the opportunity to teach interested attendees at this conference.

It sounds like your advocacy focus is on helping low-income populations…?

My advocacy work pertains to all type 1’s. But for many PWD of a lower socioeconomic status, there are additional barriers to accessing information about diabetes technology, realistic management methods, and obtaining additional supplies. There needs to be a better system in place to support the person who does not have preexisting healthcare or insurance knowledge, does not have regular access to internet, is a busy caregiver, or has limited income or education.

Thanks for this POV, Hannah. We look forward to welcoming you and hearing more of your voice at our Innovation Summit!