Diabetes Advocate is Educator and a Patient

Patient Voices Winner 2017Congrats again to the 10 winners of our 2017 DiabetesMine Patient Voices Scholarship Contest, whom we have been featuring in a series of interviews — and who will be joining us for our annual Innovation Summit at November.

Today please winner winner Sarah Picklo Halabu, who is originally from Michigan but now resides in Naperville, IL. She’s a longtime kind 1 diagnosed as a kid who has grown up to become a certified diabetes educator (CDE), exceptionally enthused about improving cardiovascular care. She advocates on behalf of many in our Diabetes Community, also has a keen eye as to what could change in a clinical setting to gain patients.

Without further ado, here’s our latest Q&A with Sarah…

An Interview with Diabetes Advocate Sarah Picklo Halabu

DM) Hey Sarah… to start off us, how did diabetes first come into the film for you?

After attending a week of zoo camp, I was diagnosed. It was an extremely hot week, and I remember being remarkably thirsty. Luckily, my parents noticed how rapidly I was losing weight and scheduled a trip in the pediatrician. When we came in pediatrician’s office, I had this sinking feeling that someone would somehow discover how thirsty I was. They did. My blood glucose was somewhere in the high 400’s. I was admitted to the hospital after 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 own parents, but their guts in calming my fears, determination to not let me see diabetes as a limitation, and fearlessness in jumping into the T1D pattern was (and still is) epic. My parents have really been a consistent shield of support and encouragement during my trip with T1D, and I can’t emphasize what a tremendous difference that has made in my attention and the quality of my life.  

Can you remember how it felt for you in the moment, being young?

It was a tough adjustment to life with T1D (as it is for everyone)… however my mindset took a turn to the positive once I spent some time with the dietitian at the hospital where I was diagnosed. She was kind, compassionate, and positive and symbolized the first person to give me a sense of confidence after my diagnosis. After fulfilling her, started telling everyone that I wished to be a dietitian. And so my pursuit of getting an RD CDE started… and it’s of very little surprise to anyone in my family this is my occupation. Having T1D has single-handedly taught me about the capability for individual 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 getting a CDE, I worked as a clinical dietitian. At present, I work in medical publishing and my advocacy for improving patient care is vital to my work.

What is it like, being an educator and residing with T1D yourself?

As a PWD, working as a CDE is an unbelievable adventure that I would highly recommend for any PWDs who love science and technology. Day one on the job as a PWD CDE we Can speak two important languages:

  1. The individual encounter of diabetes, which varies significantly from person to person;
  2. the medical and scientific elements of therapy, which also vary significantly from provider to provider. Because diabetes is equal portions personal experience and therapy regimen, being comfortable in both languages/worlds is a true benefit to providing the very best care to others.

Many PWDs will understand the analogy of diabetes control being a fulltime job in itself. Employed as a CDE who teaches diabetes self-management abilities to others can intensify this sentiment. Diabetes (both your own or someone else) is front and center of your mind daily. For me personally, this was a positive because this really inspired me to be really in addition to my care.

So being a patient and supplier brought perks for you?

Yes, when I think of being a PWD-CDE, I often reflect on the many positives:

  • Access to unlimited learning opportunities associated with diabetes, diabetes care, and brand new diabetes treatments.
  • Befriending additional PWD coworkers or diabetes health care providers who are equally as passionate about diabetes advocacy and attention. Great diabetes care teams can move mountains!
  • CDE positions often have very great insurance benefits and possess broad coverage for diabetes supplies and medications.
  • Immersion with different PWDs and unlimited opportunities to both a) find out ( and b) empower others. It is extremely rewarding work!
  • Knowledge about new, cutting edge treatments and D-tech. It is wonderful to know what products and medications are in the pipeline.
  • The opportunity to alter the dialogue about diabetes. Advocating for better diabetes care, diabetes equipment, and diabetes alternatives. Personally, this is my favorite.

Diabetes education itemsSounds like a fantastic way to attract an insider’s POV into the clinical side of diabetes, no?

Definitely! Additionally, I assisted a diabetes clinic identify ways to improve the patient experience in our office, and discovered there are many opportunities to create office visits more patient-centered! Those opportunities included:

  • Modifying the scripting medical professionals use during visits to include more supportive, understanding speech.
  • Simplifying pre-appointment files and enrollment materials to encircle only what is truly necessary and beneficial to your health care team.
  • Providing pump instruction classes which present all pump models available so patients possess the ability to choose best “match” for them.
  • Streamlining pump and CGM downloading processes to decrease duration of time disconnected from apparatus.
  • Coordinating a program for elderly girls to organize appointment times/visits with maternal fetal medicine clinic (as the amount of appointments are many).
  • Providing in-office diabetes-centered counseling via psychotherapists with experience in T1D.
  • Meeting patient-identified psychosocial and diabetes instruction needs at every office visit using a routine screening tool.
  • Offering same-day diabetes education visits.
  • In-office coaching to help instruct PWDs about the nuances of living with diabetes in the patient-centered perspective.
  • Modeling a strengths-based perspective that puts the PWD in the middle of conclusion.

Being a PWD CDE isn’t about having “ideal” diabetes or wearing a “star individual” badge. It is the opportunity to have an insider perspective and use this to help others in their own journeys in almost any way possible.

Great insights! You’ve been involved in diabetes advocacy efforts too, correct?

Yes, I take every opportunity I get to be involved with the diabetes community and urge for PWDs. I’ve been involved with many efforts through time, such as diabetes camp as both a camper and health care professional volunteer, and JDRF walks, galas, summits and fundraising activities.

Some may find it intriguing that my spouse Nathan and I contributed proceeds on behalf of guests in our wedding (in 2015) to JDRF. And my marriage bouquet even had a diabetes spin, as I put grapes in my bouquet as a backup hypoglycemia stash.

Interesting! Which are the biggest changes you have seen in diabetes care through the years?

The good: Several therapies have improved since my diagnosis — better insulins, smaller blood samples for BG tests, quicker BG meters, smaller needles and lancets, and much more diversity in pump infusion sets. There are also many new tools available like CGMs, more sophisticated insulin pumps, and inhaled insulin. Of all of these essential therapy advancements, I believe CGM has been most transformative.

The disappointing: Though it is wonderful that there are better and more tools to assist with diabetes control, this isn’t a long-term fix to T1D. The people who innovate and design these tools should be applauded for advancements that DO make massive improvements to the quality of their lives. However, we have not fully embarked into the age of illness remission. None of these “tech” advancements are actually addressing the cause of the autoimmune process tripping T1D.

Can you tell us about the diabetes program development you have been part of?

I worked with a South African endocrinology group and program developer to make an program for people with T2 and also to improve the access to diabetes education in South Africa. Access to diabetes education in South Africa is a challenge, so this was important function.

The program is called Empower Diabetes, also it’s part of the first full digital diabetes platform in South Africa for people with T2. It is available on the Apple store, and the pricing information can be found on the internet here.

I was selected as a builder for this project based on my experience with diabetes education software development. They were especially searching for someone with my personal and professional expertise. Again, this program is definitely more for T2.

Any ideas on present challenges in diabetes innovation?

Cost is the biggest challenge. But I also believe there are many similar diabetes technologies that actually don’t offer significantly different capabilities. Also, focusing a lot of energy/effort/funding on apparatus development and not prioritizing autoimmune research to identify the cause and answer to T1D.

Many processes are designed around the efficiencies of business, business and practices — all of which place the needs of PWDs absolutely last… That needs to change.

Diabetes Advocate & CDE Sarah Picklo Halabu

Going back to my own CDE function, though, I really do think too little focus on the patient encounter remains a big challenge. Many processes are designed around the efficiencies of business, business and practices — all of which place the needs of PWDs absolutely continue in the hierarchy. That needs to change.  

So far as technology use and access, what would you suggest?

Several new diabetes healthcare professionals trial pumps and CGMs during their own training. I wish there were a method to make this a more accurate experience for people with flawless, normal blood sugars. Sure, adjusting to wearing (and carrying) these devices is noble, but wearing the unit is not the complete experience. Sounds a little ridiculous, but a “T1D simulator” would be a phenomenal training tool.

How about accessing the proper supplier and health care team?

Some of my half-baked ideas may be a Yelp for diabetes offices, to help patients find the right supplier for their requirements and supply clinics with valuable feedback about the requirements of their patients.

Taking that to a different degree, in light of the recent hurricanes, it would be fantastic if there were a centralized method to contribute extra diabetes supplies to people in need. Though there are many generous donors and volunteers to organize these efforts during emergencies/disasters, there is a demand for one company to own this for supplying diabetes medicines and supplies in times of pure disaster/emergency.

Any ideas on improving affordability and access, as you mentioned?

I grew up in Metro Detroit, and the tradition of visiting Canada is quite normal for people from that point. Most drugs are cheaper in Canada, so many make the trip for that reason. I have several relatives who have bought medication in Canada, just no additional family members with diabetes who needed to buy insulin.

This idea resurfaced recently when my parents made a trip to Windsor, once I had been complaining to my mom about the expense of insulin onto my high deductible plan. She went to Walgreens at Windsor to compare the purchase price of a vial of Humalog — $32 there. Notably, the brand new short-acting Fiasp insulin is also available in Canada now and is also much less expensive there as it is in the U.S.

Therefore, thinking outside the box to address the insulin affordability problem in the U.S. — for residents with a legal U.S. passport (or even enhanced driver’s license) who live near an global border like Canada or Mexico, perhaps there is a way to produce a specific system or program to having the ability to bring diabetes supplies at a neighboring state which may be a less expensive option. Is not it amazing the cost difference can be so drastic?! Why such disparity?

We can continue to ask for answers about these differences and prices related to insulin production, though looking to new avenues to affect the demand for insulin at the U.S. may also be a viable strategy for several geographical areas.

Great ideas, thank you. What are you looking forward to regarding the Innovation Summit?

Linking with additional PWDs and using our collective experiences to give insight on “real life with T1D,” and innovating with different PWDs to come up with new solutions to improve care.

Thanks for sharing your story and ideas with us, Sarah!

Disclaimer: Content created by the Diabetes Mine team. For additional information click here.

Disclaimer

This content is made for Diabetes Mine, a customer health blog focused on the diabetes community. The content is not medically reviewed and does not stick to Healthline’s editorial instructions. To find out more regarding Healthline’s venture with Diabetes Mine, please click here.

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