I was honored to have the opportunity to meet Bernie Sanders, his crew and 14 other Americans living with/caring for those with type 1 diabetes this past Sunday.
How did I get myself onto the Bernie Bus?
Basically, I harassed people on the internet… just kidding! It has always been my dream to meet one of my American heros. Politics aside, Bernie Sanders has always stood up for what is morally right. He was the first politician to come out a couple years ago and say it how it is- the insulin cost crisis in America needs to end. He is one of the few politicians who has reached out to our community to listen to our stories in addition to standing up for affordable insulin.
So, a couple of weeks ago, I found out about Bernie’s Caravan to Canada on social media, and was directed by my KOI Insulin4all friends (shout out to you, Lori!) to contact Quinn Nystrom. Quinn is a bada** insulin advocate, diabetes book author and professional speaker. She has even testified in front of the House Committee about the cost of insulin! I provided Quinn with my story and some personal information, and was told that the Sander’s team was looking for a diverse group of people in need of affordable insulin. She made no promises, and passed my info on to the Sanders team. A week later, I was ECSTATIC to find out that I had been accepted to the trip by the Sanders team! Also, thank you to Quinn, Jillian and the Sanders team for organizing such a once in a lifetime opportunity!
On Sunday, I met everyone in a carpool parking lot in Detroit near the bridge to Canada. I arrived a little early and was interviewed by every major news source you could think of, and I did give them my true feelings about Medicare for All and the insulin cost crisis in America. Eventually, we were directed to get on the bus. A few minutes later, Bernie joined us on the bus. He came straight to the back of the bus where the people/caregivers of diabetes were sitting and shook all of our hands. He sat in the back with the T1D crew who were able to share their stories with him. I sat a little further away from him and was scared to go up to him at first!
Being followed around by the media was nerve wracking, but many of them were friendly young adults who I really enjoyed speaking to! They continued to interview us on the bus when taking breaks from filming Bernie. The ride to Canada took about an hour due to customs… and it was really cool to go through customs with Bernie Sanders at the border!!! Once we got to Windsor, a crowd of Canadians holding up insulin4all signs met us at the pharmacy. Bernie has many Canadian friends for sure! We went right into the pharmacy where multiple camera crews circled in and out and we were able to purchase our insulin.
HOW WERE WE ABLE TO PURCHASE INSULIN IN CANADA?
In Canada, you are able to purchase insulin over the counter and without a prescription. However, pharmacies do not have tons of insulin stocked, so we called our order in ahead of time. Legally, you can purchase up to a three month supply of medication (vague definition) for yourself only over the border (so for me, that was seven vials of Fiasp). When we arrived at the pharmacy, we gave them our names (because we ordered ahead) and they had our insulin ready for us. I did not need to show ID, proof of having diabetes, provide any insurance or prescription information. I was able to purchase the same exact medication for an incredible price cut.
My Fiasp came to a total of $43 per vial. In the US, my insurance is charged $347.67 per vial.
Coming back through customs, we declared all of the insulin we purchased. We had to state it was a three month supply for ourselves. The border agents came onto the bus and checked all of our receipts and looked through some of our insulin bags.
Back inside the pharmacy, everyone had a chance to share their story on camera if they wished while others purchased their insulin. Part of my story is posted below- shout out to Fox News for cutting me short! I also left out WHY I was in particular need of insulin right now. As a young adult who is early in their career, I am likely to switch insurance a couple times throughout the next year which is scary! I may have lapses in coverage or difficulty ordering medications when needed to during times of switching insurance. The Fiasp I was able to purchase will hold me over during those times.
It was really eye-opening to listen to everyone else’s stories. However, the story that struck me the most was of the mother and son duo, Hunter and Kathy Sego.
When Hunter went to college, he started picking up his insulin from the pharmacy. When he realized how expensive it was (over $1,000), he felt like a burden to his parents and started rationing insulin without telling anyone.
This story hit home for me as 43% of the young adults with T1D in my dissertation study reported rationing insulin. Hunter became sick from running his blood sugars consistently higher and suffered in class and on the football field. His mother, Kathy’s, story is also extremely compelling. Being a parent caregiver of a young adult with T1D during the insulin crisis is beyond terrifying. Hugs to Kathy for sharing her story and for being so strong! See below to hear more about their story!
SO what did I actually talk to bernie about?
First, we chatted about Cleveland and I told him all about my BFF Bekah who I visited the night before in Ann Arbor! But, leave it to me to go up to Bernie and discuss not only my research but other recent studies that show that insulin rationing may be a larger problem than in the study he kept referencing (25%- one statistic from one Yale study). I explained more details about the Yale study and I gave Bernie a couple of research abstracts that describe the potential issue of insulin rationing further, and he put them in his pocket! One may have been my own abstract from some of my dissertation data…
SO WHAT ARE MY TRUE THOUGHTS ON BERNIE SANDERS? What was he like in real life?
The news sources loved asking me the first question question. My answer: I fully support his morals and admire him for standing up for the right thing. In real life, he didn’t raise his voice like he does when he gets political! He was kind and genuine. He listened to our stories. He wants to shine light on how the cost of insulin is actually impacting Americans with diabetes and put an end to it!
What are my True feelings on Medicare for all?
How did my T1D handle all of the Bernie Bus excitement?
Well, thanks to DIY Omnipod Loop, I was able to maintain pretty stable BGs throughout the day! However, I did use the jojo temp override feature (120% of insulin needs, same target, left it on all day) and I ended up using SO MUCH more insulin than usual!!! And yes, some of those carbs were fake to try to get my BG down. It is also interesting that I spiked as soon as I woke up on Sunday morning- couldn’t contain my nerves and excitement! Take a peek below.
So what did I learn through this experience?
First of all, Detroit is actually beautiful, especially when viewing the skyline across the river! Who would have thought?! This Clevelander feels guilty for never giving Detroit a chance. Still, shout out to this video.
Next, I have always been intrigued by becoming more involved in politics in the future. This trip reminded me that I am truly focused on scientific evidence and what I see from the clinical perspective. I kept getting worried as a healthcare provider/researcher to hear (innocent) lay people make statements based off of a statistic from one study, or to explain an aspect of diabetes to the media that isn’t completely true for everyone (with the worry that it would be misinterpreted)- but that’s what I was there to help with and can continue helping with. I’ve personally experienced the media misinterpreting facts I’ve given them before so that may be why I’m worried! Overall, this trip inspired me to think about all of the scientific and clinical evidence and how it can be applied to healthcare policy- not just stated to the media. However, the important, personal insulin crisis stories do need to be continuously shared with the media to continue strong advocacy work.
I also learned that the Canadian insulin situation isn’t all sunshine and rainbows. Many Canadians are worried about Americans coming to Canada to purchase insulin and running out of insulin supply. My wonderful grandparents, who are Canadian citizens (and not US citizens), shared this article with me and expressed their community’s concerns. Other Canadians are still advocating for affordable insulin in Canada, as many Canadians with diabetes have to purchase insulin without insurance coverage. One study by T1 International even found that 19% of Canadians ration insulin. Another scary part is that there is now concern for insulin being taken away from over the counter in Canada due to the influx of Americans coming to purchase it! Canada’s healthcare system has its issues as well, and I’m not sure modeling after their system will solve our insulin crisis completely, but I’m thankful to have purchased affordable insulin in Canada to hold me over right now.
After returning, I also learned about the concerns many diabetes advocates and providers have about the cost of insulin problem being downplayed for those living with type 2 diabetes. We made sure to highlight the issue impacts ALL insulin dependent people with diabetes as over 7.5 million US citizens are insulin dependent, most of whom live with type 2 diabetes. The rationing statistics provided applied to people with all types of diabetes, and when many of us spoke, we made sure to not highlight just type 1 diabetes. This is a crisis for all US citizens living with diabetes.
And lastly, I am beyond inspired by the amazing crew of people with/caring for diabetes on the bus and their bravery speaking up and advocating for what people living with diabetes in the US desperately need! Thank you Bernie Sanders and team for setting this up and advocating with us. #Insulin4All