The rising cost of prescription drugs has some Utah families going to an "underground network" in order to afford their medication. (IMAGE: KSL Newsradio)
This is part 1 of our 5 part series.
SALT LAKE CITY, Utah — Stephanie Arceneaux says she’s just doing her part.
Others might say she’s some sort of an insulin Santa Claus in the fight against soaring prescription prices. Most accurately she can be classified as a lifesaver.
On this given afternoon, she’s working a stick shift and navigating the hills of a nondescript Sugarhouse neighborhood.
She’s looking for Stein Portmann’s house. Stein, just like Stephanie, is a Type 1 diabetic.
The only difference is he’s 15-years-old.
Stephanie is an active member of the Utah chapter of Type 1 International, which advocates for transparency and lower cost of insulin in the state.
She also is part of an “underground network” of Utah diabetics that donate and deliver excess insulin and supplies to those in need.
Stephanie is not only a diabetic herself, but her husband and young son are also Type 1. The medical burdens force her to often rely on donations in order to pay for the drugs and supplies her family needs.
Yet on this occasion, she’s playing the role of delivery driver. She’ll be picking up a donation from Stein before driving almost forty miles north to deliver the supplies. Additionally, she’ll be stopping on the way back to swap supplies with someone else who reached out to her online.
A full afternoon for someone receiving nothing in return.
“Being the recipient of so much generosity made me want to help others and help alleviate their stress, because I know how stressful it is,” she explains.
According to her, the network of diabetics in Utah has grown exponentially on Facebook and she’s become well-known as a source that can allocate and deliver donations when needed.
Those donations can range in size and value based on differing circumstances.
“I just got a really large donation last week that went and helped sixteen people between a three month and year-long supply,” says Arceneaux.
She’s out making deliveries at least two or three times a week, which have to be done in the afternoon after she gets off her full-time job.
While every delivery is a little different, this one happens to be a first for her.
“To my knowledge, I haven’t had anyone previously this young want to donate,” she explains. “I think it’s amazing.”
Stein may only be in high school, but diabetes has been a part of almost his entire life.
Over time, his medical needs have changed and he no longer requires all the supplies that he once did.
After being introduced to Stephanie, he initiated the idea of donating his stored supplies to someone with a greater need.
“There are a lot of people out there that need to ration and I kind of was motivated to give my extra stuff that I’ve been basically stockpiling through all these years of diabetes,” he explains.
Stein hands over two Harmon’s bags full of various supplies, which can last someone a couple of months.
The surprise for Stephanie is that he’s including an insulin pump, which raises the value of his donation to somewhere in the range of $10,000.
“There are some Type 1 diabetics that go into large amounts of debt to afford them,” says Arceneaux.
For Stein, it’s a no-brainer knowing how much of a burden others face to pay for medical supplies.
Insulin prices continue to skyrocket and an average diabetic patient is now spending over $5,000 annually for the drug, which was initially created with the expectation that it would be public and available for all.
Yet Stein is quick to point out that while insulin may create the biggest burden, it’s not the only cost associated with being a diabetic.
“The whole problem with this health care thing is a lot of the focus is on insulin, but that’s just a fraction of the price,” he explains. “I still need test strips [and] all of the supplies to keep me in good control.”
With rising prices across the board, he’s already considering how it will impact his career choice.
“I need to find something that has good enough health care for me,” explains Stein. “Because if not, how am I going to pay for it? There’s no way.”
He says it’s discouraging to already feel like some avenues aren’t realistic to pursue.
“Sure I can follow my dream career, but I can’t to the point that other people can,” he explains. “It has to be something that is able to support me.”
For a diabetic, insulin helps keep blood sugar levels at an appropriate level. If they get too high or too low the individual can go into a diabetic coma or worse.
“This isn’t a product I can just boycott,” says Stein. “Insulin is something that if I stop using I will die.”
Stephanie accelerates up to highway speed as she heads north in search of Ashlie Doerfler’s home, who will be receiving the supplies that were just donated.
Along the way she opens up about her relationship with diabetes, which is something that has been an ongoing struggle since she was diagnosed at 6-years-old.
“I moved out on my own a little over twenty years ago,” explains Arceneaux. “I thought that things would be better in twenty years, but everything has just gotten more expensive.”
Her four-year-old son Darwin was also diagnosed with Type 1 diabetes over a year ago. With all three family members living with diabetes, she estimates that close to half of their household income is going towards paying for health care.
“I can easily see another twenty years going by and my son having to struggle with the same things that I have had to struggle with,” she says. “Having the same fears [and] being terrified of not having what he needs to live.”
While Stephanie is in the driver seat today, she often finds herself in the position of relying on the generosity of friends and strangers alike to ensure she has enough insulin.
Right now, she’s getting by thanks to a modified diet that requires her to use less than half of the insulin she’s prescribed. But as the costs rise year after year, she often worries that people will no longer afford to be so generous.
“The costs could keep going up and even people that have excellent insurance and have great coverage right now, they may start feeling the pinch and can’t donate any longer,” she explains.
In the late afternoon, Stephanie circles around a Roy neighborhood looking for Ashlie’s home. After spotting the right address and walking up the driveway, she’s greeted by a giddy 28-year-old.
Doerfler lives at home with her mom and a number of younger family members, despite being engaged and working multiple jobs.
Holding back tears, she graciously accepts the grocery bags full of supplies that will be enough to last her at least two or three months.
“Just for somebody and other people to actually reach out, I’m not going to lie, whenever this happens I go into tears,” says Doerfler. “I’ve seen another family within a family.”
Doerfler and her fiancée continue to look at apartments and alternative housing options nearby, but the price always seems to be too lofty considering her monthly insulin costs are as much as splitting rent.
“It ends up hurting me well over $500 or more,” she explains. “Then people look [at me] and are like, ‘Why are you having such financial problems?'”
Not only has costs associated with diabetes restricted her from moving away from home, it also has given her second thoughts about growing her family.
Doerfler says she wants to have a child at some point, but can’t financially rationalize it in the immediate future.
“It really has given myself a mindset that even if I am able to have a family, right now, am I going to be able to keep providing for them and myself within the next year?” she explains.
As it turns out, Stephanie isn’t there to just deliver the diabetic supplies, but she’s also someone that can listen and provide some therapeutic relief. Today, that includes being a shoulder to cry on.
“Why is it costing me like my entire life to be able to keep living?” Doerfler tearfully asks. “People really don’t see how much it hurts.”
By the time Stephanie finishes her hugs and walks outside it’s completely dark.
On the ride back, she laments about Ashlie’s situation.
“I mean she couldn’t move out of her parents house, but also she is sleeping in the living room on the couch,” she explains.
Frustration and empathy fuse together as she continues.
“When you become an adult you want to move on, you want to live your own life [and] have a family,” says Stephanie. “Ashlie can’t do any of those things, she’s stuck, just because she can’t afford her insulin.”
Following one more stop to swap supplies she’s finally home.
Driveway to driveway the trip takes about four hours.
Nonetheless, it’s something she’ll do again later that week and next week. Stephanie says she’ll keep doing it until something changes and all diabetics are able to afford their medication.
This is the cost that Utahns face to stay alive with rising prescription drug prices.
Unfortunately, it’s not just insulin. The cost for prescription medication for high blood pressure, depression and anxiety continues to skyrocket and forces everyday people to make life and death decisions.
Tomorrow, A Costly Cure will dive into some of the factors dictating the market and causing inflated prices.