Congrats again to the 10 winners of our 2017 DiabetesMine Patient Voices Scholarship Contest, whom we've been featuring in a series of interviews -- and who will be joining us for our annual Innovation Summit in November.
Today please welcome winner Sarah Picklo Halabu, who is originally from Michigan but now lives in Naperville, IL. She's a longtime type 1 diagnosed as a child who has grown up to become a certified diabetes educator (CDE), incredibly passionate about improving diabetes care. She advocates on behalf of many in our Diabetes Community, and has a keen eye as to what could change in a clinical setting to benefit patients.
Without further ado, here's our recent Q&A with Sarah...
An Interview with Diabetes Advocate Sarah Picklo Halabu
DM) Hey Sarah… to start us off, how did diabetes first come into the picture for you?
I was diagnosed with T1D at age 9 after attending a full week of zoo camp. It was an extremely hot week, and I remember being unusually thirsty. Fortunately, my parents noticed how rapidly I was losing weight and scheduled a visit at the pediatrician. When we arrived at pediatrician’s office, I had this sinking feeling that someone would somehow discover how thirsty I was. Thankfully, they did. My blood sugar was somewhere in the high 400’s. I was admitted to the hospital later that day and spent three days there learning the ropes of T1D.
How did your parents react to the diagnosis?
I can only imagine how devastating it was for my parents, but their courage in calming my fears, determination to not let me see diabetes as a limitation, and fearlessness in jumping into the T1D routine was (and still is) heroic. My parents have been a consistent shield of support and encouragement during my journey with T1D, and I cannot emphasize what a tremendous difference this has made in my care and the quality of my life.
Do you remember how it felt for you at the time, being so young?
It was a tough adjustment to life with T1D (as it is for everyone)... but my attitude took a turn for the positive when I spent time with the dietitian at the hospital where I was diagnosed. She was kind, compassionate, and positive and represented the first person to give me a sense of hope after my diagnosis. After meeting her, began telling everyone that I wanted to become a dietitian. And so my pursuit of becoming an RD CDE began… and it’s of very little surprise to anyone in my family that this is my profession. Having T1D has single-handedly taught me about the capacity for human resilience -- it’s limitless.
Can you share more about working in the diabetes field?
Yes, I am a registered dietitian and Certified Diabetes Educator, with my practice focusing primarily on adults. Before becoming a CDE, I worked as a clinical dietitian. Currently, I work in medical publishing and my advocacy for improving patient care is vital to my work.
What’s it like, being both an educator and living with T1D yourself?
As a PWD, working as a CDE is an incredible experience that I would highly recommend for any PWDs who love science and technology. Day one on the job as a PWD CDE we are able to speak two important languages:
- the patient experience of diabetes, which varies significantly from person to person;
- the medical and scientific components of treatment, which also vary significantly from provider to provider. Because diabetes is equal parts personal experience and treatment regimen, being comfortable in both languages/worlds is a real advantage to providing the best care to others.
Many PWDs will understand the analogy of diabetes management being a full-time job in itself. Working as a CDE who teaches diabetes self-management skills to others can intensify this sentiment. Diabetes (either your own or someone else’s) is front and center of your mind everyday. For me, this was a positive because this actually inspired me to be really on top of my own care.
So being both a patient and provider brought perks for you personally?
Yes, when I think of being a PWD-CDE, I tend to reflect on the many positives:
- Access to endless learning opportunities related to diabetes, diabetes care, and new diabetes treatments.
- Befriending other PWD colleagues or diabetes healthcare providers who are equally as passionate about diabetes advocacy and care. Great diabetes care teams can move mountains!
- CDE positions tend to have really great insurance benefits and have broad coverage for diabetes medications and supplies.
- Immersion with other PWDs and endless opportunities to both a) learn from and b) empower others. It's extremely rewarding work!
- Knowledge about new, cutting-edge treatments and D-tech. It’s wonderful to know what products and medications are in the pipeline.
- The opportunity to change the dialogue about living diabetes. Advocating for better diabetes care, diabetes gear, and diabetes solutions. Personally, this is my favorite.
Sounds like a great way to bring an insider’s POV to the clinical side of diabetes, no?
Definitely! I also helped a diabetes clinic identify ways to improve the patient experience at our office, and found there are so many opportunities to make office visits more patient-centered! Those opportunities included:
- Modifying the scripting medical professionals use during visits to include more supportive, understanding language.
- Simplifying pre-appointment documents and registration materials to encompass only what is truly necessary and valuable for the healthcare team.
- Providing pump education classes which objectively present all pump models available so patients have ability to choose best "fit" for them.
- Streamlining pump and CGM downloading processes to decrease length of time disconnected from device.
- Coordinating a program for pregnant women to coordinate appointment times/visits with maternal fetal medicine clinic (as the number of appointments are many).
- Providing in-office diabetes-centered counseling via psychotherapists with expertise in T1D.
- Meeting patient-identified psychosocial and diabetes education needs at each office visit using a routine screening tool at visits.
- Offering same-day diabetes education visits.
- In-office coaching to help educate PWDs about the nuances of living with diabetes from a patient-centered perspective.
- Modeling a strengths-based perspective that puts the PWD at the center of decision-making.
Being a PWD CDE isn’t about having “perfect” diabetes or wearing a “star patient” badge. It’s the opportunity to have an insider perspective and use this to help others in their journeys in any way possible.
Great insights! You've been involved in diabetes advocacy efforts as well, correct?
Yes, I take every opportunity I get to become more involved with the diabetes community and advocate for PWDs. I have been involved with many efforts over the years, including diabetes camp as both a camper and health care professional volunteer, and JDRF walks, galas, summits and fundraising activities.
Some may find it interesting that my partner Nathan and I donated proceeds on behalf of all guests at our wedding (in 2015) to JDRF. And my wedding bouquet even had a diabetes twist, as I put grapes in my bouquet as a back-up hypoglycemia stash.
Fun! What are the biggest changes you’ve seen in diabetes care over the years?
The good: Many treatments have improved since my diagnosis -- better insulins, smaller blood samples for BG checks, faster BG meters, smaller needles and lancets, and more diversity in pump infusion sets. There are also many new tools available like CGMs, more advanced insulin pumps, and inhaled insulin. Of all of these necessary treatment advancements, I believe CGM has been most transformative.
The disappointing: Though it is wonderful that there are more and better tools to assist with diabetes management, this isn’t a long-term fix to T1D. The individuals who design and innovate these tools should be applauded for advancements that DO make large improvements to the quality of our lives. However, we have not yet fully embarked into the era of disease remission. None of these “tech” advancements are actually addressing the cause of the autoimmune process triggering T1D.
Can you tell us more about the diabetes app development you’ve been a part of?
I worked with a South African endocrinology team and app developer to create an app for individuals with T2 and to improve the access to diabetes education in South Africa. Access to diabetes education in South Africa is a large challenge, so this was very important work.
The app is called Empower Diabetes, and it's part of the first full digital diabetes platform in South Africa for people with T2. It's available on the Apple store, and the pricing information can be found online here.
I was selected as a contractor for this project based on my experience with diabetes education program development. They were specifically looking for someone with my personal and professional experience. Again, this app is definitely more for T2.
Any thoughts on current challenges in diabetes innovation?
Cost is the biggest challenge. But I also think there are so many similar diabetes technologies that really don’t offer significantly different features. Also, focusing too much energy/effort/funding on device development and not prioritizing autoimmune research to identify the cause and solution to T1D.
Going back to my CDE role, though, I do think a lack of focus on the patient experience remains a big challenge. Many processes are designed around the efficiencies of industry, business and clinics – all of which place the needs of PWDs absolutely last in the hierarchy. That needs to change.
As far as technology use and access, what would you suggest?
Many new diabetes healthcare professionals trial pumps and CGMs during their training. I wish there were a way to make this a more accurate experience for individuals with perfect, normal blood sugars. Sure, adjusting to wearing (and carrying) these devices is noble, but wearing the device is not the full experience. Sounds a little ridiculous, but a “T1D simulator” would be a phenomenal training tool.
How about accessing the right provider and healthcare team?
Another of my half-baked ideas might be a Yelp for diabetes offices, to help patients find the right provider for their needs and provide clinics with valuable feedback about the needs of their patients.
Taking that to another level, in light of the recent hurricanes, it would be great if there were a centralized way to donate extra diabetes supplies to individuals in need. Though there are many generous donors and volunteers to coordinate these efforts during emergencies/disasters, there is a need for one organization to own this for providing diabetes medications and supplies in times of natural disaster/emergency.
Any thoughts on improving affordability and access, as you mentioned?
I grew up in Metro Detroit, and the practice of going to Canada is quite normal for people from there. Most drugs are cheaper in Canada, so many make the trip for that reason. I have several relatives who’ve purchased drugs in Canada, just no other family members with diabetes who needed to purchase insulin.
This idea resurfaced recently when my parents made a visit to Windsor, after I had been complaining to my mom about the cost of insulin on my high deductible plan. She went to Walgreens in Windsor to compare the price of a vial of Humalog -- $32 there. Notably, the new short-acting Fiasp insulin is also available in Canada now and is also not as expensive there as it is in the U.S.
So, thinking outside the box to solve the insulin affordability problem in the U.S. – for residents with a valid U.S. passport (or enhanced driver’s license) who live near an international border like Canada or Mexico, maybe there’s a way to create a specific program or system for being able to bring diabetes supplies in a neighboring country that may be a more affordable option. Isn’t it amazing that the price difference can be so drastic?! Why such disparity?
We can continue to ask for answers about these differences and costs associated with insulin production, though looking to new avenues to impact the demand for insulin in the U.S. may also be a viable strategy for some geographic regions.
Great thoughts, thank you. What are you looking forward to about the Innovation Summit?
Connecting with other PWDs and using our collective experiences to provide insight on “real life with T1D,” and innovating with other PWDs to develop new solutions to improve care.
Thanks for sharing your story and thoughts with us, Sarah!