The U.S. health care system is letting people down when it comes to prescription drugs. That’s according to a recent study from researchers at the University of Utah and University of Colorado, which looked at how and why patients with diabetes are going outside the system for the medical supplies they need.
The study’s lead author Michelle Litchman, a nurse practitioner and diabetes social media researcher at the University of Utah, said that rather than going through insurance or a pharmacy, diabetes patients are scanning sites like eBay, Craigslist, and KSL classifieds, plus social media message boards, to find medication and supplies they couldn’t otherwise get.
While the main reasons for going rogue are clear — Americans spend more than anyone else in the world on drugs — Litchman said she was surprised to find that many patients are doing it to help each other.
“People were accepting medications and supplies from complete strangers, and complete strangers were willing to help,” she said, adding that many of them provided those supplies for free.
The study surveyed 159 diabetes patients, family members and caregivers nationwide and found that over half — 56% — used the black market to donate extra medicine.
About 30.3 million Americans, roughly one in 10, had diabetes in 2015. Many pay close to $10,000 per year in medical costs directly associated with the disease.
Of those who require insulin, one in four people ration out their medication more slowly than prescribed due to cost, which doubled between 2012 and 2016.
That presents huge risks to patients, who could fall into a diabetic coma or die without proper treatment.
“While we know adverse events are possible, we didn’t see any in our study,” Litchman said. “And I think if you put that in contrast with what we’ve seen in recent news where there have been deaths related to rationing insulin [or taking the cheaper, generic version], we need to be paying attention to that.”
It’s hard to say how widespread the prescription drug black market is, but Litchman said it likely exists well beyond the patients surveyed. She worries many patients don’t have a network of friends or family or the internet savvy to find some of the online sources for cheaper drugs.
It’s also not the first time patients have gone rogue. In the 1980s, HIV/AIDS patients created the Dallas Buyer’s Club, treating themselves with experimental and unapproved drugs.
Correction 10:56 a.m. MST 12/12/19:A previous version of this story misspelled Michelle Litchman’s last name.