As costs of insulin rise, Utah diabetics are going online to plead for the drug from strangers

Centerville • Stephanie Arceneaux’s eyes brim with tears as she opens a foam cooler on a picnic table outside the Centerville In-N-Out Burger.

“It’s so much!” Arceneaux says, surveying the contents: eight Basaglar pens, seven pens and a vial of Levemir, and, in a box next to it, a huge collection of needles, syringes, lancets and blood sugar test strips.

It's at least $1,500 in insulin and medical supplies.

Jennifer Draney calls the transaction “Diabetic Christmas” — a name that suits Arceneaux’s joy but not the galling circumstances that brought the two women together.

Arceneaux and Draney are part of a grassroots network of Utah diabetics who solicit, collect and redistribute donated insulin to fellow patients who cannot afford a lifesaving drug that was first created nearly a century ago, in a public lab, with the expectation that it would be available to all.

Instead, soaring insulin prices have led many patients to a potentially deadly gamble: rationing. One in every four diabetics is using less insulin than they are prescribed — or forgoing it altogether — because they cannot afford it, according to research published this year by the American Medical Association.

In Utah, patients have taken to social media to plead for help when they are out of both insulin and cash. Others have responded by sending word when they find themselves with extra insulin on hand — usually because their prescription changed or a patient in their family died.

Volunteers now are crisscrossing northern Utah to pick up insulin where it’s offered and drop it off where it’s needed. Draney alone estimates she has made at least 70 insulin deliveries in the past few months.

She’s the first to acknowledge it’s not a good solution. Insulin can lose effectiveness if it’s not refrigerated, and recipients have to simply trust that the previous owners stored it correctly. Distributing prescription drugs also is illegal — but that’s a risk Draney says she’s willing to take.

“When someone’s life is at risk, you have to do something. Any one of us would do it,” Draney said. “And that’s what I’d tell the judge.”

Missing meals ‘so he can live'

Mindie Hooley didn’t know her teenage son was rationing his insulin until she joined him at a doctor appointment in 2018. Then 17, Dillon was charting his highest blood sugar levels since he’d been diagnosed, Hooley said.

That’s when Dillon confessed: He had been cutting back his insulin doses by two-thirds. His father’s work hours at a Tremonton steel mill had just been cut after he was injured on the job. And Dillon knew his monthly insulin costs of $800 were already straining the family budget.

“We’ve lost cars and homes and have had to choose whether we buy food,” his mother confirmed. “But it doesn’t matter if we have to go without food so he can live.”

Dillon saw things differently. “I saw the financial stress my family was going through,” he said. “I felt that [rationing insulin was] the best I could do to help my family at the time.”

But he had been diagnosed with Type 1 diabetes three years earlier and was well aware of the risks. If a diabetic’s blood sugar gets too high, blood becomes acidic, causing loss of consciousness and eventually death. That’s why daily insulin treatments are so important and rationing is so hazardous.

“It never truly kicked in how dangerous it was and all the potential long-term complications that come with it,” said Dillon, who now is 18. “Rationing insulin is definitely something I hope I never have to do again, nor do I recommend it to anyone — but I don’t regret it.”

After media coverage of Dillon’s decision, other diabetics began reaching out to Hooley. She discovered T1 International, an advocacy group for Type 1 diabetics, and launched a Utah chapter.

That's when the desperate requests started appearing — as well as offers of insulin.

“Sometimes it gets overwhelming with how many people reach out needing help,” Hooley said. “ ... But two people messaged me just this morning, wanting to send me some."

Hooley and others she met through T1 decided to begin making deliveries in February, independent of the chapter. Hooley said she’s made at least 20, at times driving up to two hours to take donated insulin to someone who has run out.

At the In-N-Out Burger, the box of Basaglar insulin pens has finished just one leg of its journey around northern Utah. It changes hands at least three times before it ends up with a little girl who has gone without her long-acting insulin for two days.

‘It’s just a nightmare’

Not everything that goes into diabetes care is covered by insurance. When Draney’s son, Spencer Knecht, was diagnosed with Type 1 two years ago at age 16, her family was covered by Medicaid. It paid only for vials of his insulin — not pens, which use premeasured doses and are often easier to use, especially for a newly diagnosed teenager. Draney eventually found a new job with insurance that covered the pens.

“That changed his whole world!” Draney hollers over the wind as she drives her bikini-top Jeep Wrangler from her home in South Ogden to a neighborhood in Roy, where the cooler of insulin and box of supplies are waiting on a donor’s front porch.

The past year has brought Draney's own diabetes diagnosis — but first she became so sick she had to quit the new job that provided her insurance. The coverage wasn't that great anyway, she says ruefully; the family still had to pay $450 per month for Spencer's insulin pens until the deductible was met.

Back on Medicaid, Draney says, she has spent months fighting on the phone for things she and her son need. He finally obtained a wearable insulin pump, which works like a mechanical pancreas. But at that point, Medicaid was covering only his prescribed Humalog insulin in pens — which aren’t made for use in a pump.

Instead, Medicaid was covering lispro — a half-priced “authorized generic” version of the fast-acting Humalog brand. Eli Lilly announced it was launching the cheaper drug this spring, shortly after congressional hearings where the three U.S. insulin makers had taken a beating over price spikes.

But months after its introduction, Draney called drugstores and clinics around northern Utah and could not find a pharmacy that carried lispro — a problem reported in other states, too.

Greg Kueterman, a spokesman for Eli Lilly, surmised that pharmacies have been slow to stock the cheaper lispro because it is new, they haven’t been certain how much to order, and they don’t have refrigerator space for it.

Draney suspects a more entrenched, systemic problem: The secret rebates that “pharmacy benefit managers,” or PBMs, collect from drugmakers.

PBMs are middlemen who negotiate between drugmakers and insurance companies to determine which drugs are covered by an insurance plan, and how much patients using the plan pay for them at the pharmacy.

With only three PBMs controlling about 80 percent of the U.S. market, they’re able to demand rebates from the drugmakers. So a drugmaker collects its list price — from an insurer or a patient — but then returns a percentage of that income to the PBM.

PBMs say the rebates are then passed on to insurers, resulting in lower premiums for patients.

But critics say the arrangement gives drugmakers an incentive to raise list prices so they can offer bigger rebates and win a spot on the “formulary” — the list of drugs that PBMs offer to insurance companies, and insurers then cover for their patients.

The rebates are kept secret from patients, so the public has no way of knowing how much a drug would cost if the prices didn’t include them — or how much of the rebate PBMs and insurers are keeping for themselves.

But one thing is certain, Draney says: A cheaper drug means a smaller rebate for the corporations.

Express Scripts, one of the three major PBMs, placed lispro on a list of drugs it refused to offer in most cases shortly after the new insulin was announced.

Today, only 1 in 5 Americans with commercial insurance has coverage for the lower-cost lispro, Kueterman said. Far more are covered for Humalog, its pricier twin.

"It's absolutely just insane that an insurer would not cover a cheaper drug," Draney said. "I can't even wrap my head around it."

With no immediate access to lispro, Spencer used a syringe to get the insulin out of his pens — a practice discouraged by drug safety advocates. Draney says she kept arguing on the phone until coverage for the Humalog vials was approved last month.

“It’s just a nightmare,” Draney says. Her family has not yet resorted to rationing insulin. Instead, she says, the family filed for bankruptcy, let utility bills go months past due, and the Jeep was briefly repossessed.

But now it’s decorated with mementos that remind Draney never to lose heart. The family mascot — a toy alligator called Muffler — is tucked behind the sun visor. A clay charm hangs from the rearview mirror, a gift from Spencer carved with Draney’s signature phrase: “Fly lightly.”

When she finds the boxes of insulin donations in Roy, she adds another souvenir to the display: a note from the donor, calling Draney a “Diabetic Angel.”

“Let’s hope for a day when insulin is affordable for all!” wrote the donor, who did not want to be identified in The Salt Lake Tribune because of the risk of criminal prosecution. Distributing prescription drugs is a class A misdemeanor, said Salt Lake County District Attorney Sim Gill — though, he said, having to share insulin “is more an indictment of our broken health care system.”

“Oh, my gosh! She left a ton!” Draney gasps, happier as she loads up the boxes and heads toward Centerville to meet Arceneaux.

A lifesaving ‘luxury’

Arceneaux and her husband, Nathan Cram, both have Type 1 diabetes. And a little more than a year ago, their son Darwin was diagnosed as well.

She estimates they spend about 40 percent of their income on health care. She’s using only about a third of the insulin she’s prescribed to stretch out her supply, which is mostly cobbled together from donations.

“I just don’t eat very much so I can take less,” she says, cleaning up after her son’s lunch. Four-year-old Darwin Cram remains in the early stages of the illness and doesn’t require insulin.

But she’s not taking any chances. Darwin wears a digital monitor to track his increasingly volatile blood sugar. He proudly reads it himself: “216!” It’s a big number for a 4-year-old.

Measuring blood sugar is a crucial part of diabetes management, and many patients and their families describe digital monitors as a sanity- and lifesaving tool. The device tracks blood sugar through a sensor on an arm and transmits data to the user’s smartphone or a separate receiver. Alarms sound when the numbers get too high or too low.

It can be a massive quality-of-life improvement over pricking a finger and depositing blood on a colored strip — recommended several times a day for a lot of Type 1 diabetics. Wait too long, and blood sugar can spike or plummet without them knowing until it’s too late.

Earlier this year, Hooley woke up teenage Dillon to find him lethargic, with his arm twitching. She said she tried to squirt honey into Dillon’s mouth, but he was so confused that he spat it out and began wiping it over his face and belly.

Blood sugar levels below 70 mg are considered too low. Dillon’s blood sugar that day was 22. “Thankfully, I had woken him up because if I hadn’t," Hooley said, “he probably would have gone into a diabetic coma.”

Hooley posted a request on GoFundMe and raised $5,000 for Dillon’s monitor. Draney is spending nearly $400 a month on sensors and transmitters for herself and her teenage son; before that, she set an alarm for 2 every morning to draw and test blood from Spencer as he slept. And Arceneaux is getting crucial medications from the back of a Jeep in the parking lot of In-N-Out Burger. The money she saves will keep Darwin hooked up to his FreeStyle Libre system.

None of them has insurance coverage for the monitors, and although diabetes is a life-threatening illness, each describes the coveted device in the same way: a “luxury.”

So while innovations in diabetes care have added decades to patients’ lives, the exploding expense poses a gnawing question: What technology should a diabetic try to live without?

Not much, said endocrinologist Debra Simmons, who specializes in diabetes at University of Utah Hospital. Diabetes technology isn’t about convenience, she said; it can drastically change the control people have over their blood sugar, limit the mistakes they might make and improve how well they follow their treatment regimen. When patients can’t afford the medication and tools they need, it can expose them to grave risks.

“We’ve known since the 1990s that tight control of Type 1 diabetes markedly decreases the risk of complications: blindness, kidney failure, neuropathy, ulcers, amputations,” Simmons said.

Arceneaux has had 20 years since her diagnosis to learn how her body responds, and try to adjust her diet to use less insulin than she’s been prescribed. She acknowledges it’s a dangerous strategy.

But after witnessing 20 years of insulin price increases, there’s something that scares her more: “I’ve always been afraid of running out of insulin," she says, “and ... terrified of not being able to afford it.”

Diabetic patients are spending, on average, $5,700 a year on insulin — a figure that doubled from 2012 to 2016, the Health Care Cost Institute reported. Before that, the list price of insulin nearly tripled from 2002 to 2013, the American Diabetes Association found.

Arceneaux says she has gone to the pharmacy for a prescription refill, only to be charged $100 more than she paid the month before. Her husband began cutting back on supplies, she says; his syringes have been reused so many times the numbers have worn off.

They’re aware of the risks of using whatever is cheap or free, Arceneaux says. Switching types of insulin frequently can cause volatility in blood sugar, and insulin generally expires a year after purchase; “My husband and I have 3, 4, 5-year-old insulin,” she says.

They hope their skimping will mean that when Darwin inevitably requires insulin, they will be able to afford whatever he needs.

Prices rising ‘in lockstep’

But even Arceneaux draws a line, and it’s in 1996 — the year the first insulin analog was created.

Analogs, also known as “designer” insulin, marked a turning point. Before that, diabetics relied on what’s known as synthetic “human” insulin, which required patients to meticulously time their eating and activity level alongside injections, Simmons said. The newer analogs absorb differently and offer much more flexibility.

Long-acting analogs, like Basaglar and Levemir, provide a stable “backdrop” of insulin over a long duration, she said, while rapid-acting analogs, like Humalog and NovoLog, absorb quickly to address high blood sugar.

Drug companies often point to technological advances to explain rising prices: How else will medical innovation be paid for?

But Eli Lilly sold a vial of Humalog for $21 in 1996; it is still Humalog today, but it costs more than $250, Yale endocrinologist Kasia J. Lipska told a U.S. House committee during an April hearing on insulin prices.

“There’s been no innovation to improve Humalog. It is the same exact insulin hormone,” Lipska said. “The only thing that’s changed is the price.”

Sanofi and Novo Nordisk, the two other major insulin manufacturers, followed suit.

“Those three manufacturers have literally raised their price in lockstep year after year over the course of the last six to seven years,” Leanne Gassaway, a policy analyst with the insurance industry trade group America’s Health Insurance Plans, told a Utah legislative committee this month. Several lawsuits and investigations involving price-fixing allegations are pending against the manufacturers.

Meanwhile, the old human insulins still are widely available without prescriptions and at much lower costs — around $25 for a 10-milliliter vial. Some policymakers have pointed to so-called “Walmart insulin” as a potential solution to the cost crisis.

They do work well for some people, Simmons said. But for Type 1 diabetics especially, they can leave a perilously narrow margin of error.

“If someone absolutely cannot afford the [analogs], it could potentially work OK — but that’s only because we have the bad environment of how expensive it all is,” Simmons said. "Overall, it’s not a good option.”

To ask diabetics to forgo the most effective treatments for them is inhuman, Draney said. “Why have all this technology," she said, "if no one can afford it?”

Arceneaux says she’s open to other solutions. She recently learned of Federally Qualified Health Centers: community clinics that offer doctor visits priced on a sliding scale and allow patients to fill prescriptions at sharply discounted prices, negotiated by the federal government for hospitals and clinics that serve vulnerable populations.

There are more than 50 such clinics around Utah. But they likely cannot accommodate every diabetic who needs cheaper insulin, said Alan Pruhs, executive director of the Association for Utah Community Health. They already serve about 170,000 patients in the state, and many of them are frequently at capacity.

“Our health centers in Utah are somewhat unique in that we see one of the highest, if not the highest, rates of uninsured in our centers, and the lowest Medicaid rates in the nation," he said.

That means the clinics go unreimbursed for more of their patients — "which puts our centers in a position of being fiscally fragile,” Pruhs said.

Medicaid expansion likely will help the nonprofits’ grant dollars stretch further, he said. Utah voters in 2018 approved full Medicaid expansion, but the Republican-dominated Legislature repealed the ballot initiative and replaced it with a more restrictive plan. Officials in the Trump administration refused to fund the partial expansion, which will trigger full expansion in January.

Solving the problem

Those involved in Utah’s underground insulin exchange say their highest hope is that it would no longer exist, that all diabetics instead will be able to access affordable treatment.

For now, though, the drug handoffs are leading to conversations in person and online — as well as a sense of solidarity — and creating a small but burgeoning political movement among Utah diabetics, most of whom were previously not much involved in public policy.

Through Utah’s T1 chapter, called Utah #insulin4all, Hooley has provided contact information for state and federal lawmakers and templates for letter-writing — and every diabetic interviewed for this story has reached out to various representatives, though most said they received no reply.

Now they are trying to organize more visibly. Last month, dozens gathered at the state Capitol to hold a vigil for diabetics who have died because they couldn’t afford treatment. Hooley and Draney have met with state health officials and legislators to push for a battery of reforms, some of which are being implemented in other states.

In Minnesota, legislators are looking at proposals to force drugmakers to provide free insulin for up to a year for people with qualifying low incomes, or to create a fund, paid for by drugmakers, to provide 90-day emergency insulin supplies to people who can’t afford their prescriptions — though a similar measure was defeated there earlier this year, despite bipartisan support.

In May, Colorado became the first state to cap copayments for insulin with a law forcing insurers to charge no more than $100 per month. But the cap doesn’t apply to people who are uninsured, or who are covered by employers with self-funded plans — up to 30 percent of insured people in the state. The law takes effect next year, and several other states are looking to imitate it.

Don’t look for Utah to be among them, said state Rep. Norm Thurston, R-Provo. Instead, he says, he is drawing up legislation to allow the state to negotiate for insulin on behalf of all Utahns.

“There would be a central contract at a negotiated low price,” Thurston said, “and anybody and everybody could take advantage of that."

No other state has done this; other state-level bargaining efforts have generally focused on Medicaid and Medicare recipients, the uninsured, public employees, and government providers such as state hospitals, jail clinics or public health departments — not those with commercial health insurance. Washington and Oregon have jointly negotiated prescription drug discounts for all residents, but diabetic advocates have criticized price transparency for insulin, which is still very expensive.

Thurston says three or four other states — he wouldn’t identify which ones — have said they would consider joining Utah, potentially creating a larger pool of patients and more bargaining power.

The state would, effectively, be playing the role of a PBM, but with no profit motive and no mysterious rebates built into the prices, he said.

“That’s what the PBMs try to do: make sure they’re bundling [buyers] together,” Thurston said. “But the PBMs bring in their own price increases. They add costs to the system as well. They’re not solving the problem.”

The inability to negotiate has long been blamed for the drastic disparity between prices in the U.S. and in other countries, where governments bargain on behalf of their entire populations.

For now, Thurston’s proposal is in the research stage, and he acknowledges it has a long way to go.

To better understand drug prices, Utah passed a law last year that requires PBMs to report in April 2020 how much money they obtained from drug companies in rebates and how much of that they kept.

But Deborah Chollet, an economist and researcher with the policy think tank Mathematica, said ideal legislation would examine every entity involved in drug pricing: manufacturers, PBMs, wholesalers, insurers and pharmacies. She reported to a Utah legislative committee this month on recommendations from the National Academy for State Health Policy.

"When the price goes up to consumers, which entity along the supply chain is responsible?" Chollet said. "Without the information in place, they're always going to say, 'It's the other guy.'"

Even with comprehensive reporting requirements, the whodunit of high insulin prices may go on for years. California’s first report from its data-gathering, released this month, showed dramatic increases in wholesale drug prices. But more than two-thirds of the submissions ignored the law’s requirement to provide an explanation for price increases — and the major pharmaceutical trade group has sued to have the transparency law overturned.

In Nevada, which last year began collecting data from drugmakers, PBMs and insurers, state officials have issued fines totaling $17.4 million to more than 20 companies that failed to comply with its transparency law, according to The Nevada Independent.

In the meantime, Utah diabetics continue to pass vials and pens from person to person. The day after Arceneaux picks up the boxes at In-N-Out Burger, she gets a message from a Taylorsville mother who says her 9-year-old hasn’t had her long-acting insulin in two days. Arcenaux decides she has enough to spare.

Soon, the mom is at Arceneaux’s door with a note from her daughter: “thanks for helping me out & have a great day”

During 2019, The Salt Lake Tribune is reporting on prescription drug prices in Utah through the Association of Health Care Journalists’ Fellowship on Health Care Performance, supported by The Commonwealth Fund.