My name is Xanadu Roque and I live in Gainesville, Florida. In 2003, I was diagnosed with type 1 diabetes. At 12 years old when diagnosed, I was still on the Florida state insurance plan for kids, but when I turned 18, I no longer had health insurance, which meant facing the full list prices for medications like insulin.
Being uninsured as a person living with type 1 diabetes was incredibly scary. Insulin prices are immensely expensive even with insurance, but without coverage, affording the medicine I need to survive is near impossible. For almost a year, I lived rationing leftover insulin that I had saved from before I became uninsured. By the time I was about to turn 19, I was almost out of insulin and I ended up in diabetic ketoacidosis –– a serious condition that can lead to death.
I am now insured through my job and am able to afford my medicines, but I live in fear of what would happen if I were no longer able to afford my insulin. I’m on an insulin pump and take Novolog, and also take Tresiba when on breaks from my pump. This treatment regimen works well for me, but with list prices for a one-month supply of Novolog or Tresiba costing hundreds of dollars, I worry how I would afford this necessary medicine if I didn’t have insurance coverage to lower the cost. I wouldn’t be able to afford to be on a pump and wouldn’t have Continuous Glucose Monitoring that helps me monitor my blood sugar levels and keep them consistent.
Because of my experience, prescription affordability is something that is close to my heart. I work with a project where I help teach primary care physicians about resources for patients who can’t afford their treatments. I also work as a diabetes peer coach, helping individuals with diabetes find resources to help them manage diabetes better. With all the financial barriers to accessing affordable insulin, equipping doctors and patients with resources like the ones we provide can mean the difference between someone affording the medicine they need to survive or not being able to access it –– which can lead to serious complications, or even death.
When the grant for my current job is up, I worry about where I will find insurance. With the high cost of insulin, I know that being uninsured and paying the full list price is not an option. Patients like me shouldn’t have to live with the high price of medicine we need to survive constantly hanging over our heads.
Patients like me need –– and deserve –– better from our drug pricing system. We shouldn’t have to live in uncertainty about how we afford our medicine. Patients should be able to access prescriptions like insulin at affordable costs without the worry of how they’ll afford next month’s refill.