Pricy Prescriptions Leave Patients Looking To Each Other — Not The Healthcare System — For Support
When Stephanie Arceneaux and Raune Palmer met for the first time, it was to trade prescription drugs.
The two live more than 80 miles apart, but connected online a week earlier. And as they walked to Palmer’s kitchen, past unpacked moving boxes and scattered toys, Arceneaux pulled out the red lunch cooler she used to transport the supplies. Inside were nine vials of insulin.
“Oh my gosh,” Palmer said as Arceneaux unzipped the bag. “One of these vials will last me a month and half.“
The supplies are for Palmer’s 9-year-old son, who has Type 1 diabetes — a difficult to manage autoimmune disease. Patients require insulin to regulate their blood sugar.
Arceneaux is not a doctor or pharmacist, but responded to Palmer’s call for help on a private social media group for diabetes patients and caregivers in Utah. Palmer couldn’t afford the medicine her son needed and had asked members if they could help her find some.
It’s an example of what researchers at the University of Utah have called a “black market.” Faced with rising costs of prescription costs, patients are turning to each other for help. They connect via social media to swap medicine and supplies they couldn’t otherwise get, but also to offer advice and emotional support.
Americans spend more on prescription drugs than any other country. In Utah, that’s led patients to ration or stop taking their medications altogether. In 2017, 44% of Utah residents said they stopped taking medication as prescribed due to cost. With a disease like Type 1 diabetes, that could lead to serious health consequences — if not death.
“People are dealing with a system that doesn’t care about them,” said Michelle Litchman, a nurse practitioner and diabetes social media researcher at the University of Utah. Litchman led a recent study that surveyed 159 diabetes patients, family members and caregivers nationwide. She found that over half — 56% — used the black market to donate extra medicine.
“There are various levels of support,” Litchman said. “So emotional support, tangible support — as we've seen with these medications and supplies. And also sometimes people can explain things in a different way — how a doctor or a nurse practitioner might talk to you versus how a peer could talk to you.”
Raune Palmer turned to social media because she couldn’t get help elsewhere.
She said her family used to have insurance through her husband's employer. But even with that plan, they faced huge out-of-pocket costs. After they recently moved to Utah for her husband’s new job, which doesn’t offer insurance, they’ve been scrambling to figure out how to get the supplies their son needs.
“How am I supposed to make [my son] succeed in life, if I can’t afford it?” she said.
Diabetes patients are particularly vulnerable to price spikes. Even though prescription insulin has been around since 1922, its price has risen more than 1000% in the last three decades. The insulin Palmer received, Eli Lilly’s Humalog, retails for over $300 a vial.
“We’ve had to file bankruptcy because of all of the medical bills,” she said, adding that her family’s total debt is around $150,000.
And Arceneaux doesn’t just deliver medicine, she uses the network herself.
She and her husband both have Type 1 diabetes and have relied exclusively on insulin donations for the last year. They have good insurance through her husband’s government job, but last year their monthly copays for insulin alone shut up to $1000 a month.
“We were just hemorrhaging money,” she said. “And when I joined these groups, I saw someone saying they had extra insulin they wanted to donate. It was a lightbulb moment for me.”
That’s when she started driving up and down the Salt Lake Valley, picking up donations. She’s since joined forces with three other volunteers. They not only pick up and deliver supplies all over the Wasatch Front, they ship too.
But Arceneaux said the need extends far beyond those they can reach. In one private group for Utah residents, there are close to 4,500 people. And that’s just for diabetes treatment. Arceneaux said the same issues apply to other chronic illnesses too.
Trading prescription medications is technically illegal, according to the Utah Department of Professional Licensing, which manages pharmacy licenses. Litchman said it’s mostly worrying, though, because it can be dangerous to take medications from unofficial or unregulated sources. But as the tools to treat chronic diseases get better everyday, Litchman said they’re also getting more expensive.
“If you don't have a population that can access what they need because they just simply can't afford it, the next biggest technology or the next new invention in drug discovery, it's not helpful,” she said.
But she said there are more conversations happening now about what can be done to lower drug costs.
Here in Utah, lawmakers are pushing several healthcare bills this session.
One that would have a direct impact on diabetes patients is H.B. 207, introduced at a House Health and Human Services Committee hearing earlier this month. The bill is sponsored by Rep. Norm Thurston, R-Provo, and would cap insulin copays at $30 if insurance companies don’t reduce prices on their own.
It passed unanimously out of committee last week and will head to the full House for a vote.
Rep. Raymond Ward, R-Bountiful, a member of the committee who’s also a family physician, said the bill will help lots of people. But it won’t solve the deeper problem in the U.S. healthcare system — the lack of competition. Currently, there are only three drugmakers allowed to make insulin for U.S. patients.
“The reason that manufacturers can jack up the prices is because there's only three of them, instead of 20 or 30 of them like for other products,” he said. “And the reason there's only three of them is because the FDA chooses to regulate in a way that only allows very, very few.”
He said changing that will require Federal action.
Until that day comes, patients like Stephanie Arceneaux and Raune Palmer will have to keep relying on each other.