When Salem resident Westlee Jones, son of Gary and Cyndi Jones, was six years old, the normally active boy began sleeping all the time. He didn’t want to leave the house. He often felt angry and thirsty and had begun having accidents during the night.
Alarmed, his mother, Cyndi, decided to check his blood sugar using her mother’s glucometer (Cyndi’s mother has type 2 diabetes). The testing confirmed Cyndi’s suspicion—Westlee’s blood sugar levels were dangerously high. Further testing revealed that Westlee had type 1 diabetes.
Now, Westlee is seventeen years old and will be a senior at Salem Hills High School. Although usually well managed, his diabetes hasn’t been an easy thing for him to go through.
A few months ago, Cyndi received a chilling phone call from Westlee. “He told me he was on the floor at school and he could not get up. His vision was gone and he was feeling sick.” Thanks to the quick action of school administrators, and after a trip to the E.R., his blood sugar leveled out.
Like many diabetics, Westlee relies on insulin to survive.
“Because his pancreas does not work, his body is dependent on us to get the correct dose of insulin in his body. It is not always easy because we do not know how fast his body will metabolize food and we cannot guess his activity level. There are so many factors to get it just right,” Cyndi says.
The rising cost of insulin has been a topic of debate and hardship throughout the country. Cyndi explains: “When Westlee was diagnosed in 2007, we paid $40 for one vial of insulin. The first three or four years we would not finish a vial before it would expire. Now, he uses four vials of insulin (a month) as prescribed by his doctor and they are around $287 per vial.”
Some families have resorted to getting their insulin from Mexico or Canada because of the much lower price tag found there. And there have been cases where young adults ration their insulin to a fraction of the amount they need because they can’t afford their doctor-prescribed amounts. This often results in life-threatening illness.
According to the Health Care Cost Institute, from 2012 until 2016, the cost of insulin for type 1 diabetics nearly doubled, from $2,864 per year to $5,705. And costs are only going up.
But Cyndi is quick to point out there is a lot of good happening in the diabetes world right now. “There is so much research in the area of type 1 diabetes. The insulin today is so much better and more effective than it was in the past.”
And as of a few days ago, Colorado became the first state to cap the price of insulin, ensuring that diabetics there will no longer pay anything above $100 for a vial of insulin.
The Joneses work closely with the Juvenile Diabetes Research Foundation (JDRF), which has researched for a cure and funded projects that have directly improved Westlee’s quality of life. One of these is the new closed-loop system insulin pump. It does the majority of the work for him, freeing up time and energy for him to fully participate in his busy life.
The JDRF also brings awareness to the signs and symptoms of type 1, as well as advocacy groups that are leverage funding for research and fighting for decreased costs of insulin.
Cyndi and Gary run a nonprofit called Freestyle for Hope, which has donated almost $80,000 to JDRF.
For now, Westlee is living a great life that is as close to normal as possible. He plays baseball for Salem Hills High and hopes to play in college.
Cyndi says, “To me, it is really sad that it is so expensive to keep my child alive.”
To learn more about how to help fight these growing expenses, visit the Facebook page of the Utah chapter of the nonprofit organization, T1International. This organization advocates for transparency and lower insulin costs in Utah.