By Cassie Goff | [email protected]

A pharmacy bill of $800 covering a one-month supply of medication. That’s what sparked T1International Utah #insulin4all chapter leader Mindie Hooley to take action in her local community and state government. 

Hooley’s son, diagnosed with diabetes, needs insulin to survive. After being met with that $800 bill, Hooley went home to do some research. She came upon other stories like hers, as well as stories where people had died from not being able to afford their insulin.

“I couldn’t believe we live in a country that has unaffordable lifesaving medications where people must ration insulin and even die from a lack of being able to afford medication,” Hooley said. “There’s been times when we had to choose between buying his insulin or buying food and paying our bills. We have lost our home and cars trying to keep him alive.” 

Three months after receiving the first $800 bill, Hooley’s son admitted to rationing his insulin “because he saw the financial struggles we were going though buying his insulin and other diabetic supplies, and he was trying to help with the financial cost,” Hooley said. 

While Hooley was researching, she found T1International; a nonprofit run by people with type 1 diabetes for people with type 1 diabetes. T1International supports local communities around the world by giving them the tools they need to stand up for their rights. Their aim is to ensure access to insulin and diabetes supplies becomes a reality for all. On Feb. 19, 2019, Hooley started the T1International Utah #insulin4all chapter. 

“People all over Utah have emailed me telling me how they have lost a loved one due to them not being able to afford insulin,” Hooley said. 

In June 2019, Utah #insulin4all media lead Stephanie Arceneaux came across Hooley asking for members to join the fight for affordable insulin. “As someone that has had T1D for 35 years and seen greater and greater amounts of money go toward purchasing insulin, I decided that I wanted to join that fight. I also felt compelled to do something after I began reading stories of my fellow T1Ds that were dying because they could not afford their insulin.” 

Administrative lead Jennifer Draney joined the T1International Utah chapter when there were 36 members. Draney became an advocate after her son was diagnosed at 16 years old. “Two years after my son's diagnosis, I was diagnosed type 1 diabetes as well. The immune system didn't care how old you are and T1D happens at any age.” 

In August 2019, Hooley reached out to her local representative, Rep. Norman K. Thurston expressing that there was a need for change in Utah’s diabetic community. 

“We were able to meet with him multiple times and share our stories, our headaches and our concerns. Thurston listened, brainstormed ideas with us and worked incredibly hard. We met with Dr. (Joseph) Miner from the Utah Department of Health. That meeting was impactful because he was onboard for changing the current system,” Draney said.

Soon, Thurston began drafting a bill to sponsor in the state legislature. He requested the Utah T1International chapter to be involved in drafting that bill. 

“As chapter leader, (Hooley) did all of the conversing with Rep. Thurston as to how a bill could be written and what should be included to help address the issues that had been discussed in that meeting,” Arceneaux said.

“Rep. Thurston first sent me the draft before the bill even had a bill number,” Hooley said. “The bill was revised two times and each time I was able to see the bill changes before anyone else saw them. I was able to add my input and stress parts of the bill that I supported and also stressed to him that the uninsured needed to be covered as well.”

That bill was introduced to the state legislature as H.B. (House Bill) 207 – Insulin Access Amendments. Throughout the session, members of the T1International Utah chapter were in attendance anytime there was discussion of the bill. 

“I went to the capitol several times with (Hooley) and other advocates in the chapter to lobby on behalf of H.B. 207,” Arceneaux said. “We met with several important members of the Utah House and then some of the Utah senators. Once, when I was leaving to go home, I even ran into U.S. Senator Mike Lee and lobbied him.” 

“The next few weeks were full of us begging for support on our bill, writing everyone—I believe I wrote all 76 representatives plus the Governor. I know (Hooley) was working 12 hours a day on it,” Draney said. 

During the last week of the legislative session, “we learned that one of the senators was going to propose an amendment. A portion of the bill directed that pharmacists could prescribe insulin up to 90 days in an emergency situation. This amendment shortened that time frame to 30 days. We considered this an unfriendly amendment. That was a nerve-wracking day because we desperately wanted the bill to pass as it had been written in the final version by Rep. Thurston, yet we did not want to push any senators into opposing the bill altogether by demanding that they leave H.B. 207 as is. In the end, around 6 p.m., Rep. Thurston let us know that our lobbying had forced a compromise,” Arceneaux said.

On March 10, the bill passed. “It still brings me to tears when I think back on the moment when the Utah senators voted unanimously to pass H.B. 207. It was an amazing feeling to know that, even if in just a small way, I was a part of helping those, like me and my husband, and now our son, in the future, that must have exogenous insulin in order to live,” Arceneaux said.

“In the end it passed and now it's effective seven months sooner than expected—June 1,” Draney said. 

H.B. 207 aims to create mechanisms to “increase Utahn’s access to affordable insulin.” The bill “creates an incentive for health benefit plans to reduce the required copayments for insulin; directs the Insurance Department to conduct a study on insulin pricing; directs the Public Employees' Benefit and Insurance Program to purchase insulin at discounted prices and to create a program that allows Utahns to purchase the discounted insulin; increases the number of days for which an insulin prescription can be refilled; and authorizes a pharmacist to refill an expired insulin prescription.

“H.B. 207 would not exist if it were not for Mindie Hooley and her starting the local T1International chapter, Utah #insulin4all. It is because of her and that chapter that I became involved in the bill at all,” Arceneaux said. 

“I believe this bill will save many lives and it sets the bar for other states to follow. Our fight is far from over but this step was an amazing one,” Draney said. 

“Many wonderful and kind people have reached out to me in the last three months from all over the world. These complete strangers asked us to make a GoFundMe account because they feel that no American should have to go without lifesaving medication or supplies. Because of these nice people, we were able to buy a CGM (Continuous Glucose Monitor) for my son that will save his life. My heart is overwhelmed with the amount of love that has been shown to my son,” Hooley said. 

“The diabetic community deserves the best and no one should lose a loved one because they can't afford a lifesaving medication that has been around for 100 years,” she said.