November is National Diabetes Month, and because diabetes impacts our life on a day-to-day basis, Joe and I wanted to raise awareness by explaining the challenges we face because of diabetes, the positive technological improvements that have been made in durable medical equipment that allow for greater ease in diabetes care, and how I manage my diabetes while traveling on the road.
After all, with a bit of planning, Joe and I have been able to kayak in Arkansas, hike beautiful trails in Big Sur, and create countless memories. And by planning, I mean Joe has been the literal pack mule carrying glucose and snacks in case of low blood sugar on every adventure!
For those who don’t know, I have Type 1 Diabetes, an incurable autoimmune disease that affects my pancreas; specifically, the insulin producing cells in my pancreas (islet cells). In essence, my immune system attacked my pancreas rendering my body unable to produce insulin, a hormone necessary for regulating blood sugar and processing food.
Without the ability to process food and regulate blood sugar, the body begins to form ketones, a bastard form of energy.
Now, some of you might be wondering about the description I gave for ketones. After all, isn’t the keto diet a popular fad? Don’t people want to develop ketones?
Let me explain.
Ketones are chemicals that appear in blood and urine when fats are broken down for energy which can occur when not enough carbohydrates have been eaten to provide glucose for energy.1 Because the keto diet requires people to eat little to no carbs, the keto diet follower’s body is forced into ketosis, a starvation state which breaks down fats for energy (ketones) instead of glucose. For the non-diabetic person, who still produces insulin and regulates his or her blood sugar, ketones are a viable form of energy and will allow someone to lose weight.
For a diabetic, ketones are not only extremely dangerous but also life threatening. High ketone levels make your blood too acidic. When this happens, people develop a condition called ketoacidosis. The most common type of ketoacidosis is diabetic ketoacidosis (DKA). DKA is a medical emergency that can lead to a coma or death if not treated quickly.2
When I was diagnosed with Type 1 Diabetes, my body had begun to go into DKA. Because my body wasn’t processing food, producing insulin, nor regulating my blood sugar, my ketone levels became dangerously high which caused my blood to start turning acidic. Thankfully, we caught it early, and after hospitalization, I was able to receive treatment for DKA. For those who are wondering, the treatment for DKA is insulin, electrolytes, and fluids.
Though my insulin pump now regulates my blood sugar and provides a consistent stream of insulin, DKA is always a risk. Poor blood sugar management or even sickness can cause a person to enter DKA, and to be clear, poor blood sugar management isn’t always a choice. The largest reason for this is the cost of insulin.
Challenges of Diabetes
The Cost of Insulin
The cost of insulin is one of the greatest challenges diabetics face, myself included. How can that be? Doesn’t health insurance cover it?
No, not always.
In fact, when I was working as a teacher paying for health insurance through my state job, Novolog, the short-acting insulin I use, was not covered through the top-tier health insurance plan. The insurance company wanted me to use an older insulin called Humalog instead. The only problem is that I am allergic to Humalog.
Despite a pre-authorization from my endocrinologist, a medical review from the insurance company, and several calls to the insurance company, in the end, they refused to cover the cost of my insulin.
Well surely that can’t be a huge problem; insulin is a life-saving drug. How much could insulin cost without health insurance footing the bill?
According to JDRF, the world’s largest nonprofit funder of type 1 diabetes research, the cost of insulin has risen 600% since 2002. In 2012, the average prescription cost for insulin was $344, and in 2016, the average prescription cost of insulin increased 92% and became $666.
In light of this information, I feel it’s also important to share how much the patent for insulin was sold for.
Dr. Frederick Banting sold the patent for insulin to the University of Toronto in 1921 for $1.00. He found it unethical for a doctor to benefit from a discovery that saved lives. In fact Dr. Banting was quoted saying, “Insulin does not belong to me, it belongs to the world.”
Prior to Dr. Banting’s discovery, with the help of his colleagues, James Collip and Charles Best, diabetes was a death sentence.
Quite frankly, 100 years later, for some people, it still is.
When my health insurance refused to cover the cost of my insulin, I was privileged enough to have options. My dad is a physician and could have financially helped Joe and I cover the cost of insulin, but my in-laws were selfless enough to drive down to the border and cross into Mexico in order to purchase my insulin. They did so until I could be added to Joe’s health insurance.
Ironically, after being on Joe’s top-tier health insurance plan for a year, his plan then refused to cover my insulin. This led him to leaving his company in order to find a new job with better health benefits so that my insulin would be covered.
I am incredibly privileged. Not everyone has options. Not everyone can afford the insulin they need to stay alive which is why nearly 1 in 5 Americans with diabetes ration their insulin.3 When 40% of an individual’s income is the current cost for many with diabetes just to stay alive, what other choice do many have?4
Daily Diabetes Management
Though the cost of insulin is one of the greatest challenges diabetics face, the management of the disease itself is just as difficult.
Type 1 Diabetes is a 24 hour gig. Literally.
Lack of good diabetes management can lead to serious health complications like blindness, limb amputation, heart disease, nerve damage, and ultimately, death.
In the next section, I am going to outline how I personally manage my diabetes every day, specifically while living on the road.
For simplicity and clarity purposes, I am going to break down my diabetes management, as well as some of the logistics of living with diabetes on the road into various categories. Here we go!
I survive via multiple daily injections of insulin/a continuous flow of insulin via my insulin pump, but how do I purchase said insulin while living on the road? Walgreens aka a national pharmacy chain. Thankfully, because of Joe’s health insurance plan, no matter where we find ourselves in the United States, through Walgreens, I am able to fill my prescription.
When it comes time to refill my insulin supply, (via the Walgreens app) I transfer my prescription to the nearest Walgreens in which we are located and request for my insulin to be filled.
Thankfully, durable medical equipment (DME)/diabetes technology has come a long way, and I rely on it to help me manage my diabetes. Specifically, I rely on an insulin pump and a continuous glucose monitor.
The insulin pump I have/use is the Tandem T-Slim X2 with Control IQ Technology. This insulin pump is amazing and the closest thing we have to a bionic pancreas. What makes this insulin pump so incredible is that it connects with my continuous glucose monitor via Bluetooth to keep my blood sugar within a certain range and delivers corrections, as well as ceases insulin dosages in order to do so. The Tandem T-Slim has been a complete game-changer in my diabetes management.
My pump’s infusion set (a cannula/hollow tube that sits 90 degrees under my skin that allows for insulin delivery) and insulin cartridge (the vial that holds my insulin in the pump) must be replaced every 3 days.
Now, you might be asking yourself…what is a continuous glucose monitor aka a CGM? Well, a CGM is a device that continuously checks my blood sugar and communicates with my insulin pump in order to keep my blood sugar within a certain range. How does it do this? Well, via a needle, I insert a wire that is left just under the skin that transmits my blood sugar data via Bluetooth to my receiver/phone, and in turn, my receiver/phone communicates with my pump to adjust my insulin dosages. I use the Dexcom G6 CGM.
My CGM alerts me when my blood sugar is high, and it also alerts me when my blood sugar is low. I must replace my CGM every 10 days.
Without a CGM, people prick their fingers and test their blood sugar using a glucometer. I sometimes still have to use a glucometer because every time I replace my CGM, it currently takes 2 hours to warm-up before I am able to get my blood sugar’s reading.
DME (Durable Medical Equipment) Re-Supply
So, for insulin vial refills, I go to Walgreens, but how do I refill my insulin pump supplies and CGM supplies while traveling? Great question. I receive my insulin pump supplies, specifically my infusion sets and insulin cartridges, as well as my Dexcom CGM sensors and transmitters from a private medical supply distributor. I usually buy my supplies in 90 day increments or 3 months worth of supplies at a time.
To receive my supplies, my medical distributor ships the supplies to me via UPS. Now, when we are traveling, I either make plans to mail the supplies to our home address, my parents’ house, or to an address close by. Basically, I have my medical supply distributor mail them to a place where I know we are going to be!
Diet and Exercise
It may be true that I won’t be magically cured from Type 1 Diabetes with a low-carb diet and regular exercise, but that doesn’t mean neither of these things aren’t key to excellent blood sugar control.
Regular exercise, a low-carb diet, a consistent schedule, and discipline are vital components to my diabetes management regimen. In all honesty, all these things are required for tight control over my blood sugar.
Joe and I are very intentional with meal planning and consistently attend class at various Orangetheory’s (a gym specializing in HIIT cardio workouts) around the country to maintain the type of discipline diabetes requires.
Lastly, doctor(s) appointments. Type 1 diabetes requires a visit to the endocrinologist every 3-4 months with corresponding blood work to check my A1C aka a test measuring my average blood sugar levels over the past 3 months, as well as to adjust my insulin levels if needed. Typically, I aim for an A1C between 6% and 7%. For reference, the average person’s A1C is below 5.7%.
As I mentioned earlier, poor blood sugar management or a high A1C can lead to serious health complications. Tight blood sugar control helps ensure a person continues to live and doesn’t develop serious health complications down the road, but remember, not everyone can afford the insulin nor the technology in order to ensure good control.
Though Joe and I are constantly on the road, we make return trips based on my doctor’s appointments schedule; though, occasionally, I have been able to meet with my endocrinologist via Telehealth appointments.
Type 1 Diabetes isn’t easy, but I am so thankful Joe and I have been privileged enough to still travel and seek adventure despite diabetes.
With access to insulin and good medical care, living a full life with Type 1 Diabetes is very possible. However, I hope from reading this blog post, you have become aware of the challenges many face and the realities of a person living with diabetes.
I leave you with this plea: advocate for affordable access to insulin and call on Congress to act. Join the Fight for Five, a campaign championing a world where insulin and diabetes supplies cost no more than 5% of a person’s income by the year 2025.
Access to insulin is a human right. Sign this petition to Congress demanding action on insulin now!
A few photos of our adventures with diabetes!