Why diabetics are turning to the online ‘gray market’ for insulin

“Diabetes is no longer being a Black senior problem but we are finding that it affects our young people at an alarming rate. Has it affected someone you know?? “ Because of this illness affecting more and more pharmaceutical companies are rising the cost of insulin at the same alarming rate to capitalize on more wealth for Wall Street and their investors

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.

Exchanging medications:

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.

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