WASHINGTON (SBG) — With insulin costs skyrocketing and a loss of employment and insurance due to COVID-19, some diabetics are seeking alternative solutions to get the life-saving medication they need. While that's included well-publicized cases of insulin rationing and travel to countries like Canada and Mexico to obtain more affordable products, a Spotlight on America investigation also revealed a robust black market for insulin on the internet. Experts say the underground market highlights yet another dangerous consequence of high cost in a situation involving medication some patients need to survive, especially in light of the financial challenges many patients are facing as a result of the coronavirus pandemic.
Forget lipstick and mascara. The bag Kat Schroeder carries with her everywhere is filled with supplies to keep her alive. The most important piece is the insulin the Type 1 diabetic requires to help regulate the disease she's dealt with since she was 9-years old. She said, "It’s not something I could go without. And it’s really scary to be in a position to be living day to day and hoping you get through it."
But when Kat experienced a gap in comprehensive insurance coverage, she had to do more than hope. Because her life depended on, it Kat had to take drastic measures when she struggled to afford her insulin. She explained, "I happened to have a friend who was a nurse in a hospital. They often have patients who are prescribed a full vial of insulin and if they don’t choose to take it home with them, the policy is to toss it. Instead of tossing it, she would pocket that and bring it to me. That was really a lifeline for me."
With the rapidly rising cost of insulin in the United States, many diabetics like Kat are seeking alternative solutions in moments of crisis. That includes well-documented cases of people buying the medication from countries like Canada and Mexico as well as the dangerous rationing of insulin. But we discovered people are also turning to a bustling online black market to get the life-saving medication they need.
A Spotlight on America investigation found insulin being sold on sites like craigslist, Facebook Marketplace and reddit, with some calling it "lifewater for diabetics." Often the postings list prices that we're told are significantly lower than the pharmacy cost. The posts we uncovered come from across the country, with some seemingly from diabetics who claim the medicine they're selling is extra, that they've switched brands and can't use the insulin they have available, or that they simply don't need it anymore. Others take a charitable tone, saying they "just want to help a diabetic out."
A study in the Journal of the American Medical Association Internal Medicine, published after our Spotlight on America investigation, showed researchers were able to find more than 300 ads on Craigslist for insulin from more than 200 cities. That was before the pandemic took hold in the United States. One of the study's authors, Dr. Jennifer Goldstein, a hospitalist with ChristianaCare Hospitalist Partners, told us, "Insulin costs have nearly tripled over the past decade making it unaffordable for many patients with diabetes. Prior to the COVID-19 pandemic many Americans were rationing their insulin to save on costs or seeking out unsafe, and sometimes illegal means to obtain affordable insulin. The surge in unemployment and loss of employer-sponsored health insurance due to the COVID pandemic will leave millions more without access to insulin and will undoubtedly jeopardize the health of countless Americans with diabetes. "
"When black markets crop up, when people have to travel to Mexico or Canada to get the drugs they can afford, it says the market in the United States is not working," explained David Mitchell with the independent nonprofit, Patients for Affordable Drugs.
Mitchell says one of the biggest challenges for diabetics who are trying to obtain insulin is that they're at the mercy of only a few companies that make the medication. He said, "If we had more competition in the insulin market, the prices would come down. And the government has the power to make that happen as well."
The Food and Drug Administration knows it has to do something as people move outside the legitimate drug supply chain. The agency has made it clear there's a need to increase competition and bring generics to the marketplace more rapidly. In an April statement about the steps being taken by the FDA to expand access and lower insulin prices, former FDA Commissioner Dr. Scott Gottlieb said, "A drug that’s nearly a century old should not have a list price that increases between 15-17% annually."
Mitchell says one major push for Patients for Affordable Drugs is to change the law that bars the government from negotiating with manufacturers on drug pricing, saying, "We should pass legislation that allows the government to negotiate overall drug prices on behalf of all of us in this country, which is what happens in every other developed country in the world."
Data from the Health Care Cost Institute shows the average price of an insulin prescription nearly doubled between 2012 and 2016, with spending going from $2,800 to almost $6,000 six-thousand a year. That’s for people with insurance. Those without shelled out even more, sending some underground. That's concerning to U.S. Senator Tina Smith, D-Minn.
Senator Smith said, "I think about how desperate you’d have to be to take the step of finding insulin on a Facebook page or online and you just don't have any idea whether it’s been stored safely, whether it’s within its expiration dates, whether it’s the dose or formulation your doctor has prescribed for you. It's not safe. People shouldn’t take that step but people are driven to that place because they feel like they don't have any other options."
Smith wants to make sure diabetics in crisis have access to emergency insulin so they don't have to consider rationing, visiting the online black market or other potentially dangerous options. She’s proposed a bipartisan bill in Congress along with Senator Kevin Cramer, R-N.D., that would create state-level programs designed to give people emergency access to insulin. Smith wants the manufacturers to pay for it. "The big drug companies are calling the shots in this environment right now and that needs to change," Smith said. The legislation has stalled in Congress, despite added attention to the issue as a result of the coronavirus.
Spotlight on America contacted the three manufacturers that currently make insulin, Sanofi, Novo Nordisk and Eli Lilly. Generally, their representatives tell us the cost of insulin depends on a variety of factors, including rebates paid to pharmacy benefit manufacturers that ensure affordable access to insulin by securing what's called "formulary coverage" for patients. The companies made it clear they're committed to finding ways to reduce the out-of-pocket burden on patients. And all three offer assistance, copay and savings programs they claim have helped tens of thousands of people get access to discounted or free insulin. YOU CAN READ EACH COMPANY'S FULL STATEMENT BELOW.
In the midst of the pandemic, all three major manufacturers did create special programs to assist diabetic patients. Eli Lilly even capped the price of a monthly prescription of insulin at $35 for individuals with or without insurance. Still experts know some will continue to seek underground alternatives. And Kat Schroeder understands why.
"I can’t blame anybody for doing what they need to do to get their medication," she said. "The choice is to get it or die."