This story comes from Franee, a type one diabetic who decided she could no longer accept the outrageous cost of diabetes silently. This is where advocates are born, and Franee has clearly chosen that path. Here’s Franee….
Recently, I opened a bill from Byram Healthcare, the supplier of some of my diabetes equipment. The balance of the bill was a total of $2555. This bill was for 6 sensors and 2 transmitters.
This is the dreaded bill that comes about 2-3 times a year for me, every year, because my deductible through my insurance is super high. My deductible is usually $6000, and we meet it every year, through my endless doctor visits and diabetes supplies. Welcome to the cost of type one diabetes. My husband, thankfully, contributes very little to meeting the deductible – it is fortunate to have someone healthy in our family.
While I knew this bill was coming and it wasn’t a surprise, it was disheartening after a long day at work. Pile on the additional stress of the Covid-19 pandemic and… I sobbed when I opened it.
RECLAIMING AGENCY IN CHRONIC ILLNESS
I decided that my genuine emotion needed to be captured for what it was, so I decided to video it. After videoing it, I promised myself I would offer to send it to large companies that deal with diabetes care. It was important to me that they see it with their own eyes. To hear it. I sent it to about 10 different businesses and big companies that deal directly with diabetes supplies and waited to see if I would gain any response from it, and I did.
I was fortunate that Patients Rising was getting prepped for the upcoming Intellus conference and wanted to use my video as supporting material for their presentation. This had me on cloud-9! Someone was sharing something so deep and personal to me and using it to work towards change.
Not long after that, The American Diabetes Association responded to my message asking permission to use my video on their pages to promote and educate affordability issue. Diabetes is outrageously expensive to those who have it. I was speechless. It was like I had won a race!
BEING DIAGNOSED WITH T1D
When you first get diagnosed with diabetes, you feel helpless. Your pancreas malfunctions and you must artificially “play pancreas” for the rest of your life. And you don’t get any say in the price tag that comes along with it all.
It was at an urgent care center where I was told I had Type-one diabetes. They told me that if I chose to do nothing about it, I would die by age 40. For the first week I was in a fog, time passed slowly as I imagined how my life would change. Next thing I knew I was learning things like giving myself injections, and how to count carbs. The life I had was taken from me, and I had to make myself over.
I was extremely fortunate to have a doctor in the very beginning who had type one diabetes herself. She allowed me to text her whenever I had any concerns or questions, or if I just needed someone to cry to. I was certainly not blessed to have type-one diabetes, but I was lucky to have such a strong support team compared to most.
COST OF TYPE ONE DIABETES
First you start with insulin, needles, lancets, test strips, blood meters, alcohol pads, glucose tabs, glucagon, and ketone strips. These are your basic consumable medical supplies. From there, you learn about continuous glucose monitors, diabetic pumps, and different types of insulin that work on different time frames based on your body’s needs and carb ratios. This equipment is all necessary for good management, but they come with a hefty price, in most cases not covered by insurance.
My Continuous Glucose Monitor (CGM) was paid totally out of pocket – no coverage for that at all – and runs about $1200. Before I meet my deductible, the sensors and transmitters for the CGM cost me $1500 and $400 each, respectively, but once I meet my deductible that costs drops to $265. As for my consumable medical supplies, I am very fortunate to be part of the 3 Dimensions of Care program through my husband’s work. The program lets me meet with the pharmacist at their company pharmacy, a few times a year to go over my diabetes care with them. The company graciously covers the cost of many of my supplies saving me hundreds of dollars a year, easily.
My insulin, Novolog (fast-acting) and Tresiba (long-lasting), are completely covered, along with my test strips, alcohol pads, needles, lancets and ketone strips. The pharmacy I use has reduced prices and my glucose tabs are about a $1.50 a bottle, along with other pharmacy items not related to diabetes that I may need.
CONTINUOUS GLUCOSE MONITORING
I am at a stage in my diabetes where I rely on a Continuous Glucose Monitor (CGM). The CGM reads my blood sugar throughout the day reporting and alerting me of down and up trends. This means fewer finger pricks and insulin injections because I have easier access to my numbers.
These days I often do not feel my sugar highs and lows during the day, which is great, but at night it’s terrifying. If I am not alerted by my CGM, I may not wake up to properly care for my disease. I could most definitely die if that’s missed.
STABILITY FOR THE CHRONICALLY ILL IS EXPENSIVE
One becomes reliant on tools like the continuous glucose monitor. They are not covered by insurance and priced expensively but end up becoming irreplaceable. Sometimes those unavoidable bills take a toll on your mental health and you can’t help but break down with uncertainty and feeling tired for the future. But you always have to pay them, and you always are going to need them.
ADVOCATING FOR CHANGE IN DIABETIC MANAGEMENT
That’s why we need to fight to be heard. The cost of type one diabetes must come down. Much of this should be free.
No one decides to become a diabetic, and type 1 diabetes isn’t the result of any avoidable lifestyle choices. It came on when I was 25. Diabetes could happen to you or anyone you know at any time. Diabetics are entitled to a full life and for that to be in reach, treatments must be accessible.
Franee was diagnosed with T1D at 25 and is going on year-5 learning about life with diabetes. She is a professional free-lance published model in the Connecticut area, and also works full time as an office manager at a chiropractor office. Franne lives with her high school sweetheart-husband, Kevin, dog “Piper”, cat “Twinkle” and 17 chickens! She also enjoys gardening, painting, traveling, and playing games with her husband and friends. You can find Franee on Instagram at Effleighm, her modeling profile.
The Diverse Cost of Diabetes Care – Patients Rising University
Living “With” Diabetes, but “For” Something Else – by guest contributor Rebecca Furuta
In June 2020 Patients Rising along with partners Rare Patient Voice and Team Type 1 gave a presentation to the Intellus Conference that included Franee’s video (above). What they presentation also shared was the outrageous costs facing most diabetics. Here is one of the slides from the presentation:
We hope Franee’s story and the information shared here make you interested to learn more. If it does, subscribe to our newsletter from the homepage and we’ll update you when our Type One Diabetes module is completed in Patients Rising University because there is a lot to say about the cost of type one diabetes.