SALT LAKE CITY — For Stephanie Arceneaux and her husband, both Type 1 diabetics, insulin each month costs as much as their house payment — even with good insurance.
It was an amount they couldn’t afford.
“It’s incredibly stressful. It’s very terrifying, because you know that if you can’t afford your insulin, you’re not going to be able to live. Insulin is like life support. And so if you can’t afford it, if you don’t have it, you can be in serious trouble very quickly,” Arceneaux explained.
And so when she joined an online support group about two years ago, where others were donating supplies they didn’t need anymore, the burden began lifting.
Arceneaux isn’t the only one who, with rising costs, has needed to turn to what the American Diabetes Association calls the “gray market” — seeking life-saving medications and supplies from strangers and friends, rather than official sources.
A new University of Utah study, in collaboration with the University of Colorado, delved into the phenomenon and found that though the practice holds risks, people turn to it to receive supplies out of desperation — and others donate out of altruism.
As well as going online to sites like Craigslist and Facebook to donate and receive medications and supplies, according to University of Utah researchers, many are also having others pick up insulin for them in countries where it’s more affordable, like Canada.
“Right now, we have a burdensome bureaucratic system making it challenging for people to access what they need to survive,” said Michelle Litchman, lead author of the study and a nurse practitioner and researcher at the U. College of Nursing.
The study was published recently in the Journal of Diabetes Science and Technology.
Out of 159 people surveyed from around the country — most of whom either had Type 1 diabetes or who had a spouse or child who did — 56% reported they’d donated medications or supplies to those in need. Thirty-four percent reported they’d received donated products.
Meanwhile, 24% reported they’d traded products, 22% had borrowed and 15% had purchased on the black market.
While some had donated and shared supplies among friends or family members, the majority reported they’d shared or received from strangers, Litchman said.
She’s seen the practice firsthand.
Before the study, “I was learning about my own patients who were engaging in trading and donations, or they had received donations, as well as seeing posts online through my other research,” she said.
Litchman wanted to better understand the phenomenon “from a research perspective, given that there are risks related to taking medications or supplies that are not prescribed to you. But there is also a risk to not taking medications or using supplies at all.”
Risks to receiving medication on the black market include the chance that it wasn’t stored properly, that it might be expired, or that it won’t work in the way one expects, Litchman said.
Matt Peterson, vice president of medical information and professional engagement for the American Diabetes Association, said it’s not surprising that people are turning to what his nonprofit group calls the “gray market.”
“Given how expensive these things can be, particularly if you don’t have adequate insurance, how important they are to living healthy with diabetes, it’s not surprising that some people feel the need to do that. We think it’s unfortunate that anyone would even need to do that rather than be able to afford the treatment that they and their doctor think is appropriate,” Peterson told the Deseret News.
There’s no legal restriction to buying insulin in Canada and bringing it into the U.S., Peterson said, adding that he knows a doctor in Seattle who encourages patients to cross the border to buy it.
Questions of legality do arise when one receives supplies bought through insurance knowing they won’t use it, and then resell it. “But by and large, that’s not really the issue here,” Peterson said.
While there are safeguards in the regular supply chain, including documentation that tracks insulin from the time it leaves the manufacturer to the time it’s in the hands of a patient, those practices aren’t assured in the gray market.
“Insulin is not really delicate stuff, but … it’s not good to freeze it, it’s not good for it to get too hot. And once you’re not buying it through the regular supply chain, there’s a risk,” he said.
But for many, it’s reasonable to trust insulin received from friends.
“That said, I think the unfortunate thing is that no one would do this as their regular way of getting medications and supplies, so the fact that people feel compelled to do it tells us we’re not adequately covering people’s needs for adequate care,” according to Peterson.
Rising costs and rationing
According to the American Diabetes Association, the cost of insulin nearly tripled between 2002 and 2013. Then, it doubled per unit between 2012 and 2016, costing an average of $15 per day for the average user, the U. researchers said.
That means more than $400 a month for one person on average.
And those on insurance are often left rationing their supplies.
“Many insurance companies limit how much medication or diabetes supplies an individual may receive, despite prescription from their prescribing provider, and increasing deductibles have further strained families that have health insurance. As a result, access to diabetes medications and supplies has decreased,” the Utah and Colorado researchers wrote.
Though it’s difficult to pinpoint a single reason for the high costs, “we have a complicated health care system with a lot of different people involved. The manufacturers, the pharmacy benefit companies that negotiate the prices that are actually paid compared to the list prices, people’s insurance coverage covers a lot of things, and the net effect of all these different things together … amounts to a very expensive product,” Peterson said.
Before Arceneaux discovered the support offered from others online, she said she would focus on taking “the least amount (of insulin) I needed to stay alive.”
When her insulin supply was low, she would eat less so that she didn’t need to take as much.
“So I would typically eat breakfast and then skip lunch, and then eat dinner. No snacks or anything like that. Drink a lot of diet soda so I wasn’t that hungry, a lot of water,” she said.
And for her husband’s part, he would reuse supplies you’re only supposed to use once, according to Arceneaux.
As well as donating and receiving, diabetics often trade products online when their insurance doesn’t cover what they need.
After becoming involved in the online diabetes community, Arceneaux discovered the Utah chapter of an advocacy group called T1International #insulin4all and started working with it, where she met others dealing with the same thing.
Independent from the advocacy group, many in Utah donate and receive supplies from each other, allowing Arceneaux to grow a stockpile — which is recommended in case of emergencies. She also sends medications and supplies to others.
Her son has since been diagnosed with diabetes as well, Arceneaux said. Though he doesn’t need insulin yet, the couple is preparing for when he will.
She said she wants people to understand that “insulin is not a choice. It’s not something we can go without. If we don’t have it, then we will die. And so it’s imperative that it’s accessible and affordable for those that need it.”
Mindie Hooley started the Utah chapter of #insulin4all this February. Since then, the group has grown to 450 people, she said.
“The support from people all throughout Utah has been amazing. I have chapter members who have Type 1 diabetes and chapter members who have family who have Type 1 diabetes who want to help us fight because it breaks their heart to not only see how hard it is to manage diabetes, but also the cost to keep their loved ones alive,” Hooley said.
Hooley became involved in the issue after her 19-year-old son was diagnosed with diabetes four years ago.
“We went to our local pharmacy to pick up my son’s one month of insulin, which is three vials of insulin, and the pharmacist said that our total would be $800. We were shocked.
“ We didn’t have $800 that month because this was a very unexpected cost and we had never had to pay this much for my son’s insulin before. We sadly walked away from the pharmacy that day without my son’s life-sustaining insulin,” she recalled.
After that experience, Hooley said her son began rationing his insulin without telling her to try to alleviate the financial stress on his family.
Altruism in the diabetes community
Since starting the #insulin4all group in Utah, Hooley said people message her every day to tell her they’re rationing their insulin. Those most affected by the high costs are middle- and low-income families, members of the elderly community, and those aging off their parents’ insurance plans at age 26.
“Every day I see Facebook posts where someone is asking if anyone would be willing to donate insulin or they will die without. There’s always many people to respond to these Facebook posts saying they will help this person out. No on wants to see anyone suffer and die. The diabetic community is some of the most loving and caring people I have ever known,” Hooley said.
According to Litchman, one of the biggest takeaways from the study was the reason behind many donations.
“There were very rare cases in which somebody actually paid money, and that was typically when they would purchase something from eBay, or they were coordinating the purchase of insulin from out of the country. For example, giving someone money to buy and ship insulin from Canada,” she said.
“But in the majority of situations it was that people were providing medications and supplies free of charge really because of altruism. They really didn’t want anybody with diabetes — whether it be a family, friend or stranger — to suffer the consequences of going without medications and supplies,” Litchman explained.
Another one of the researchers, Heather Walker, has firsthand experience with the issue. When she fell off her parents’ insurance at age 26, the then-student with Type 1 diabetes could no longer afford an essential medication on her college’s health insurance plan.
“It’s really stressful to not know how long your insulin’s going to last,” Walker recalled.
She says she did what many others do and accepted donations from other diabetics who had surpluses of supplies. At meet-ups for groups of people with different types of diabetes, there are often piles of supplies that attendees bring and place in a central area for others to take, Walker explained.
“But nobody really talks about it, because we all know that it’s kind of skirting the law, you know? Like we all know that we’re doing something that we’ve been told we shouldn’t do, but that we feel a necessity to do,” she said.
Walker, a social scientist and also a researcher on the study, says even now that she has “really good insurance,” she runs low on insulin every month.
Searching for solutions
Some prescription companies have begun offering coupons and discounts to certain patients. Among them, Express Scripts and its parent company, insurer Cigna, earlier this year began offering a month’s worth of insulin to eligible patients for $25, according to the Associated Press.
But Litchman says many aren’t able to access those discounts and “they add an extra layer of burden on the patient and health care providers.”
The health care providers need to be aware of the program, and then tell the patient, she said. The patient will then need the physical coupon, or the internet to access it, and then must often submit paperwork that can include tax returns. “There’s all these extra pieces that are burdensome on both the patient and provider level,” Litchman explained, and can create a delay in someone receiving the needed medication.
Assistance finding programs is available on insulinhelp.org, a site run by the American Diabetes Association.
“People should always make sure they’re accessing what they can have. Sometimes people don’t realize what their own insurance covers, or if they are on Medicare or Medicaid, need to make sure that they’re asking all the right questions of their doctor about how to get access for things. And because we do have a very complex health care system, it’s understandable that there’s confusion out there,” Peterson said.
The association has also been “working on this fight” to help make medications and supplies accessible to people who need it.
He said the solution is to make insulin affordable, and states and the federal government are “really looking into this. And we’re seeing a lot of action on that” — with improvements expected within the next year or two.
Correction: A previous version incorrectly stated that Walker has Type 2 diabetes. She actually has Type 1.