As we continue our series of talks with the 2017 DiabetesMine Patient Voices winners, today we're delighted to introduce up-and-coming advocate Phyllis Kaplan. She's a longtime T1D in Natick, MA, who spent 17 years in higher education
publishing, and is now volunteering with local organizations to "get
something started" in the diabetes world.
She will be one of the 10 empowered PWDs joining us on scholarship at our annual Innovation Summit in November.
An Interview with Aspiring Patient Advocate Phyllis Kaplan
DM) First off, you were so young when you were diagnosed... What can you share about that experience?
PK) I was diagnosed with diabetes in New Jersey at the age of 2, after being sick with a virus for a month. That was 1972. The story goes that shortly after arriving in the ER a urine sample was taken, and it was lost on the way to the lab. While that was being straightened out, blood was drawn, as I faded in and out of consciousness. My blood glucose at diagnosis was 550.
Once diagnosis was confirmed, my parents decided to move my care to a hospital in New York City due to the fact that they had endocrinologists and other specialists that the hospital in New Jersey did not. My parents had a connection at the hospital, so a bed was ready for me in the children’s ward when we got there. I stayed there for two weeks while they got me stable (IV insulin and fluid), and my parents received a crash course on diabetes, which included learning how to give an insulin injection on an orange.
I have memories of being in the hospital, the most vivid are receiving fruit punch (my assumption is this was due to low blood sugar), and asking “to take the plug out.” The plug being an IV that I had pulled out several times resulting in it finally being stitched to my ankle. I still have that scar.
Fast forward to today. Can you tell us what you're up to?
Previously, I was a production manager for Pearson Higher Education. I'm currentlly looking for opportunities... On the diabetes front, I'd like to see a local organization plan a full year of programming, including exercise, healthy eating, psychosocial aspects of living with T1D, dealing with life's complications (not just diabetes complications), and more. These could be monthly or quarterly meetings, or they could partner with a medical device group field team to create technology-driven local meet-ups.
Speaking of diabetes technology, which tools have you used through the years?
Being diagnosed in the early 70s, I can safely say I’ve seen it all. Back then wasn’t pretty; it was urine testing in a test tube with Clinitest tablets. My first home blood glucose meter was the Glucoscan 2 that took a minimum of 2 full minutes for results, and included special paper to blot the blood off the strip. The types of insulins I used over the years changed from beef-pork mix to pork, to recombinant DNA (Humalog). Insulin delivery was always syringes until I started on my first insulin pump. In the mid 1980s, I did have the opportunity to try out one of the insulin jet injectors – It was heavy, and left big welts on my arm!
What are the biggest changes you've seen in diabetes innovation?
The biggest changes that I have seen in my career with type 1 diabetes since diagnosis is the availability of treatment options, and in the last several years new insulins. When I was diagnosed, Humalog home blood glucose testing, insulin pumps, 30 cc syringes weren't available. I am excited about all of the innovations that are in progress. What I'd like to see most is faster-acting insulin.
Any thoughts to share on the newest fast-acting insulins?
I am most intrigued by Novo’s Fiasp which I first learned about it earlier this year when reading about it online. There is something very appealing about using insulin that starts to work a few minutes after administering that is also effective if taken 20 minutes after a meal. I try to bolus 15-20 minutes before the meal, but that doesn’t always happen due to dining out, or just wanting to eat when I want to eat.
Also, a few years ago, I inquired with my endocrinologist about Apidra but the thought at the time was that it wouldn’t be that different from the Humalog I’ve been using. I can also definitely see the appeal of Afrezza and know people who swear by it. I always thought it might be nice to have as a backup for emergency use for high blood sugar.
What do you think are the biggest challenges right now in diabetes innovation?
I think many people are wondering how the smarter insulin pumps will impact money going to cure research, and (are concerned) that some consider an Artificial Pancreas a cure.
You have been pretty vocal about Medtronic tech… can you talk about your experiences with that?
I have a long history using Medtronic Diabetes technology which began in 2000 with the MiniMed 508 insulin pump through today, when I’m wearing the MiniMed 670G system. I have had great experiences with all of the systems I’ve used, including the SofSensor and Enlite CGMs.
I had fairly tight diabetes control when I started using
the MiniMed 670G system in April, with my average time in range
around 81%, and average A1Cs for the last 3-4 years in the low 6.0 range. For
this reason, I had some doubts that the system could manage my diabetes as well
as I have learned to do.
And did the 670G system deliver?
Yes, right away I saw how well the system handled low glucose levels. The first week I was on it, in manual mode, I went from having two to three hypoglycemic episodes a day to one per week. I did struggle for a while combating high blood sugar, though. It took some time and patience and the help of my endocrinologist to tweak my active insulin setting. I also learned that my basal rates were covering for not so good carb-to-insulin ratios.
I started the 670G with two carb-to-insulin ratios and currently have four. While it took a few weeks and careful monitoring, it was worth the wait! It has been a few months since I’ve last made adjustments to the system, and on average my time in range hovers around 89%. While I would love to see that number in the 90% range, my glucose variability has greatly improved. My CGM graph is a lovely rolling graph vs. the peaks and valleys I had prior.
Great to hear! How did you get involved in the Diabetes Online Community, and what has it provided for you?
My first diabetes community and source of peer support started when I was 12 at diabetes camp -- Camp Nejeda in New Jersey. I was introduced to the DOC in 2015 at MasterLab (advocacy training event). The DOC, especially through Twitter, has been a great source of support and education. It opened a whole new world to me. Being able to post about an issue, a concern, or vent, and have people near and far provide instant support and advice has been great. Through the DOC I have been able to connect with so many amazing people, with equally amazing points of view from all over the world.
What other kind of diabetes activities and advocacy have you been a part of?
My involvement in advocacy changes based on what's going on in the diabetes community, as well as my own care. Currently I am working with my local ADA in the hopes to create an advocacy 101 workshop for the Fall. The idea for this started during planning the 2017 Camp Nejeda Survive & Thrive Bootcamp for adults with T1D. My feeling was that many people want to be involved with advocacy but aren’t sure how to get started, or where to advocate, or if their voice makes a difference. For Bootcamp, we were fortunate to have Bennet Dunlap from DPAC lead breakout sessions on government advocacy. I came away from Bennet’s session wanting to do more.
The goal of my Advocacy 101 is to provide a hands on program, where advocacy leaders, politicians and people with diabetes come together to educate, share stories and experiences, and provide everyone with takeaways and materials so they can put into practice -- all tin time for diabetes awareness month in November.
If you were to think outside the box to problem-solve a specific diabetes healthcare need, what would you suggest?
I am working locally to create education and social opportunities for adults
with type 1 diabetes. Ideas include partnering with hospitals, diabetes
organizations, and diabetes Pharma companies. Not just sponsoring an event, but the
hopes to provide consistent (quarterly) programs on a variety of topics
including nutrition, technology updates, psycho-social impacts and more.
The other idea I've been thinking about is I would love to train health care providers of all types on how to talk to a person with diabetes, especially when giving bad news. If not 'train,' then at least have a conversation on how what they say and how they say it can make a big difference in overall patient care, follow up, and outcomes.
What are you looking forward to most about the Innovation Summit?
I have made small steps with my ideas, but as as a volunteer I feel I have limited reach and momentum. At the Summit, I hope to be able to learn, network, land connect with others who can help me think even farther outside the box.
Thanks for sharing your story, Phyllis. We can't wait to see you in November!