Abigail Hansmeyer had waited weeks for her health insurer to approve the type of insulin that works best to control her diabetes.
Finally, with her supply running low, the New Brighton woman turned to a source that many diabetics have come to depend on: the robust black market for insulin and diabetic supplies.
"It is amazing how many people rely on it on a day-to-day basis," said Hansmeyer, who has type 1 diabetes and got the insulin off an internet site. "For two months I had to rely on that black market."
Faced with soaring costs and insurance restrictions, Minnesota diabetics are turning to Facebook, eBay, Craigslist and other lesser-known markets where they can offer medication they no longer need and ask others for help.
Reselling a prescription medication such as insulin, or even giving it away for free, is illegal under federal and state laws. Yet in certain cases, diabetics are willing to take the risk.
"My moral compass takes precedence over the legality of it," said Shari Wiltrout, mother of two diabetic daughters. She's never bought or sold insulin on the black market, but she asked for help when the family needed an emergency supply while on vacation. She quickly found a willing insulin donor through social media after unsuccessfully trying to get the lifesaving medication through official channels.
"People are doing what they need to do in order to stay alive, and I don't see anything wrong with that," she said. "We take responsibility for each other and help each other because the system certainly isn't."
The insulin black market is another example of how diabetics are coping with ever-increasing insulin prices, which jumped 300% between 2002 and 2013. One group of Minnesota diabetes activists recently traveled to Canada, where insulin prices are one-tenth of those in the United States. The group plans another trip this week.
But not all diabetics can travel to Canada, and some don't know about the black market. As a result, doctors increasingly see patients develop complications because they are rationing insulin or trying to go without.
"It happens so much more than it should," said Dr. Andrea Westby, a family practitioner in Minneapolis who recently had five patients admitted to the hospital because they couldn't get their needed medication.
"Almost all of my patients are struggling with insulin costs, even the ones that are well-insured," she said.
Health regulators consistently caution that any prescription medication bought outside the established system could pose a health risk, either through counterfeit drugs, improper storage or contamination.
"This puts a patient's health at risk from not getting the needed diabetes treatment," the U.S. Food and Drug Administration said in a statement. "Consumers should purchase their medications at a licensed U.S. pharmacy."
Buying or trading illegal
Under Minnesota law, buying or trading prescription medications is a misdemeanor. Since 2009, there have been 23 convictions under the law, although it is unclear if any involved insulin.
"Even if someone receives a prescription drug for free from someone not licensed to provide it to them, they have technically violated this law," said Minnesota Board of Pharmacy executive director Cody Wiberg.
Diabetics who use the black market know there are risks, and they use the tools of social media to vet others as well as issue warnings about problems.
On one app recently, a Minnesota user called out a seller who didn't deliver insulin despite receiving payment. Others said they experienced the same problem and cited other usernames that the seller had been using.
Still, shortly after that, the Minnesota user offered to help someone else in need, according to the posts.
The black market has tightened somewhat in recent months because Facebook and other websites have shut down groups or posts where selling and trading is mentioned.
So instead, people use code words. "I need insulin" becomes "I need lifewater."
"Liquid gold is another one that is common," said Hansmeyer. In addition to using the black market, Hansmeyer once ran a Facebook group because she wanted to help others in the community.
"It kept getting flagged," she said. She moved the invitation-only group to a different social networking site. "There's no selling allowed whatsoever in the group, and that is made very clear," she said.
Participants agree not to trade insulin vials that have been punctured, and they must ship the insulin in a way that keeps it from getting too warm or cold, which degrades its effectiveness.
"Everybody in the community is mature about that," she said.
In addition to insulin, people seek out supplies such as blood testing strips. Many insurance companies pay for only a certain number of strips per month, and many diabetics say they need more. The strips can be bought without a prescription, but at 50 cents to $1 per strip, the costs add up over time.
'It was scary'
Vicky Luedtke has bought, sold and traded both insulin and supplies on the black market. She's bought insulin pens from someone in South Carolina — they came shipped under a tracking number along with cooling packs.
"It was scary. You have concerns," she said. "But I talked to the girl, and it was fairly inexpensive."
She also bought a supply from a woman in an assisted living facility who had switched to an insulin pump that required a different type of insulin. Equipment changes like that are one reason some diabetics have extras for the black market.
However, when Luedtke got home she realized she had received the right brand but the wrong strength; even though there are only three major brands, insulin comes in many forms, including vials and pens, short- and long-acting and different strengths.
Luedtke then advertised the insulin on Craigslist. "I have medication that I can't use, and I know people need it to save their lives," she said.
She eventually gave insulin to three people, meeting them in a local gas station parking lot along with her husband.
Two of the buyers were in need because they had insurance problems and couldn't afford to buy the insulin themselves.
Another was a farmer who hadn't eaten for three days because he lacked insulin, she said. Eating elevates blood sugar levels, and type 1 diabetics need insulin to help their bodies process sugar.
Without it, their blood chemistry is severely altered, leading to complications that can include coma, organ failure and death.
"I talk to people and ask them questions so I know who they are," said Luedtke. "They all have a valid reason to need this."
But each one of them left her shaken, she said.
"I drove out of the parking lot in tears that these people need medication to live and they are getting it on the internet."