Rationing insulin to help mom and dad

Insulin is so expensive in the United States (US) that one teenager decided to ration to help his mom and dad.

In January 2019, CNN got word of the story and reported on the Hooley family and high school senior, Dillon. Dillon decided he would ration his insulin to help his parents deal with the financial burden. Of course, they had no idea. “I wasn’t thinking right, but my parents work so hard to give me what I need, and I didn’t want to put more financial stress on them,” Dillon said in the CNN news report.

People ration insulin for one reason in the US today. Insulin can cost as much as $1500 US dollars a month ($300 for an analog vial or pen set) without insurance. It’s also a problem if a family has a “prescription deductible” to cover (often $5000 per individual). Once that’s fulfilled, the individual may have to pay a percentage of the monthly total, like 20% – which would be $300 per month.

Dillon’s parents have been fierce advocates for the insulin affordability crisis in the country. They don’t want anyone to ration like Dillon did. We had the opportunity to ask Dillon’s mother, Mindie Hooley, a few questions about what’s happened since she spoke to CNN.

DV: What was the response from people to the CNN report on Dillon’s rationing his insulin?

MH: The outpouring of messages from people all throughout the United States and also outside the US has been unlike anything I thought would ever happen. There are still such good caring people in this world.

First, it all started with complete strangers messaging me asking us to start a GoFundMe so they could help my son. We were hesitant to start a GoFundMe because our purpose of doing the interview with CNN was to get the word out that Americans need help and that many people were in situations like ours. Others were rationing, too. Our intention for the interview was to help others, so for complete strangers to reach out to help us, it made our hearts so incredibly full of love.

The GoFundMe page was started so we could buy my son a Continuous Glucose Monitor (CGM) because our insurance company had denied this in the past. We have no coverage for a CGM for Dillon. I literally woke up every morning for many weeks with hundreds of messages every day from people asking if they could help us. Others also shared their frustrations about being “cheated by the system”, too. Others sent messages of encouragement and said they were thankful for our story because they were suffering from the cost of insulin, too. Most said they wanted to help because they saw how wonderful my son is in the CNN article.

Did Dillon finally get a CGM?

Dillon ended up getting a CGM from the GoFundMe donations, thankfully. It has been life changing for him and for our whole family. He’s had many hypoglycemic seizures. Once you see your son having a seizure, it affects you forever. That worry of hypos is thankfully lessened with the CGM now. I always know when his blood glucose is high or low. It’s very comforting. The CGM saves him from going too low at work and alerts him on how fast his blood sugar is dropping. It’s a definite life saving device.

Did Dillon suffer any physical consequences when he rationed his insulin?

Dillon rationed his insulin for 3 months. Although we don’t see any physical evidence right now to him rationing, it doesn’t mean that any harm wasn’t done to his organs since he was using a third less insulin than he needed a day. Rationing insulin is very tough on the organs. Since Dillon had high blood glucose for 3 months, he would often be tired, thirsty and he had headaches.

How did the family manage to communicate to Dillon that the cost of insulin isn’t his burden to carry?

Dillon had just turned 17 that month when I found out he was rationing insulin. At this age, young men tend to feel they can take care of themselves. After speaking with my son about rationing, he really didn’t understand the consequences. To him he just looked at it as “cutting back”. He had only lived with diabetes for 2 years at this time, so I don’t think he fully understood what could happen with rationing his insulin. When I found out he was rationing, I shared stories about how young adults have died from rationing.

We made sure he knew we would always figure out a way to buy his insulin, that we would always take care of him and explained how cutting back isn’t the way to help with the cost. We made sure that he understood that his life matters more than anything. We would sell everything we own if it meant he had insulin to live.

How angry are you at the system?

I’m angry with the pharmaceutical companies, with PBMs (Pharmacy Benefit Managers), with insurance companies and with our government. They are ALL to blame. In fact, I’m so angry that I’ve been interviewed by many news organizations since the CNN story came out in January 2019. We have had to choose between paying rent and buying food over my son’s life-saving medication while CEOs of these pharmaceutical companies, are living life on their yachts making billions in the process. Insulin only cost $3-$6 a vial to make, so for my son’s insulin to be $300 a vial is ridiculous. My frustration has made it so that I started the first T1International #insulin4all Chapter in Utah (USA) so that I can fight hard to bring new affordable insulin laws to Utah. We advocate for accessible and affordable insulin. I won’t stop being a loud voice demanding change until my son’s insulin is affordable.

Do you have a message for people who don’t understand the insulin affordability issue and explain the emotional and financial burden it places on families?

I honestly didn’t understand the financial struggles people in the US go through until the day we went to our local pharmacy and we were told that my son’s insulin would be $800 a month until we reached our $5000 deductible. We had to leave the pharmacy that day without my son’s insulin because it was a very unexpected expense. As a mom, this was literally the worst feeling in the world to leave without his insulin. I couldn’t protect my child that day. Insurance companies didn’t care if my son lived or died that day and my heart was crushed. There’s literally nothing worse than feeling you can’t protect your child. I won’t stop advocating for affordable insulin prices. I will use my voice anywhere I can. I will do anything I can to protect my child. He has a long life with this disease since he’s only 19 years old. He shouldn’t have to fight alone.