- Up to 26 percent of people with type 1 diabetes report they have rationed their insulin.
- A recent report found that cost and affordability are two major reasons to turn to the black market for medication.
- Experts say the rise of the medication black market shows how high prescription costs are hurting patients.
When you think of people selling and buying prescription medications on the black market, illegal drugs may come to mind. But the black market also includes donating, selling, and purchasing prescription medications that people need to survive.
“In some cases, people have had to go to extreme measures and find a network that can supply their healthcare needs,” said Michelle Litchman, PhD, lead author and an assistant professor at the University of Utah.
People use online channels such as social media and websites such as eBay and Craigslist to find medications and supplies such as glucose strips and insulin.
Though other patients use the black market for medications, it’s prominent among people living with diabetes.
“For some, they simply cannot afford what they need, even if they have health insurance,” Litchman told Healthline. “For others, they cannot easily access what they need within a reasonable timeframe — delays occurring due to delayed provider refills or insurances requiring prior authorization.”
According to the survey of 159 people with diabetes and their caregivers:
- 56 percent donated goods
- 34 percent received donated goods
- 24 percent traded goods
- 22 percent borrowed goods
- 15 percent purchased goods
“We were surprised by the frequency in which the underground exchange activity was occurring and that individuals were purposely stockpiling medications and supplies for the purpose of donation,” Litchman noted.
“The cost of many common forms of insulin have tripled over the last decade. This increase is not due to any improvement in the type of insulin being used, but the same exact product that was available a decade ago,” Joel F. Farley, PhD, a professor at the University of Minnesota College of Pharmacy, told Healthline.
“As the price goes up, patients that cannot afford treatment are forced to make decisions about whether to continue using the medication as prescribed, or ration their doses,” he said.
That’s why he can understand why patients are looking for other sources of treatment.
“This is a function of a failed market,” Farley added.
That’s why the group T1 International exists. The organization advocates for better affordability and access to diabetes products and uses the hashtag #insulin4all to show and garner support.
“It’s important that people know about the hardship that people face due to the high cost of prescription drugs, in part because of just how widespread the problem is,” said Allison Bailey, the U.S. advocacy manager of the group.
“While there are limited studies to provide statistics on how widespread the redistribution of insulin is on the ‘black market,’ we know that the redistribution of insulin and supplies is common,” she told Healthline.
T1’s 2018 Out-of-Pocket Costs Survey found that 26 percent of respondents had rationed their insulin. Another report found that rationing is even more prevalent in young Americans 18 to 25 years old — 43 percent of them rationed.
Rationing insulin has led to numerous deaths in the United States. This year alone, more than 5 people have reportedly passed away after rationing insulin, Bailey added.
“The bottom line is that no patient should have to jump through more hoops and complicated systems to access something that is essential for survival,” she said.
Several of Bailey’s chapter leaders have helped others in need get insulin, but those efforts must be done separately from their dealings with the organization (as redistributing medication is a crime).
“People engaging in broad distribution of medications or the sale of prescription medications would technically be violating federal and state policy (which varies from state to state),” Farley noted.
The U.S. Food and Drug Administration requires that medication distributors license with their state. States are responsible for overseeing the sale of medications by pharmacies and physicians, and all states have laws that restrict who can prescribe and provide medications, Farley added.
Other concerns about getting goods on the black market surround safety. Shipping mishaps could mean medication may get spoiled, which is another concern. But fewer than 1 percent of Litchman’s study participants reported troubles.
“Even if a product is authentic, it may be expired, or improperly shipped or stored, so this also raises other potential safety issues that patients may not be aware of when they receive the drug,” said Tim K. Mackey, PhD, an associate professor at the UC San Diego, School of Medicine, who has researched illicit drug sales online.
When patients purchase from an online pharmacy, it’s difficult to know if prepackaged unopened medications are authentic, especially if the pharmacy isn’t licensed to do business in the United States.
“The black market for medications does concern me,” Farley said, citing
It’s possible that government action could help bring relief from rising medication costs.
A federal act that would allow Medicare to negotiate drug prices was passed by the House but now faces hurdles in the Senate, Bailey noted.
The reimportation plans recently passed notably exclude insulin.
Several states are pursuing regulations to cap copays.
“While such bills are a step in the right direction, they exclude the uninsured, who are the most vulnerable in our community,” Bailey noted.
In some ways, the Affordable Care Act has helped those with diabetes, as it mandates coverage for pre-existing conditions. But many of the plans with high deductibles and pricey premiums make it unaffordable for many patients.
Physicians have a role in helping to make sure patients have what they need to manage their diabetes — and therefore don’t turn to the black market.
“As a provider, my patients want to take care of themselves but navigating the American healthcare system is extremely challenging, particularly for patients with type 1 diabetes who require insulin just to live,” Dr. Kara Mizokami-Stout, a lecturer at University of Michigan in endocrinology, told Healthline.
Gaps in health insurance for people with type 1 diabetes have been well-documented, but Mizokami-Stout said she suspects under-insurance plays a larger role.
Her spouse has type 1 diabetes, so she always asks patients if they have enough supplies and medication at home.
“Many of my patients with type 1 diabetes keep all of their old diabetes supplies and we joke about the ‘diabetes closet’ that people have at home to store their excess supplies,” she said. “I think this behavior is created out of necessity, particularly for people with type 1 diabetes who require insulin to survive.”
Patients should be forthcoming with their doctors if they can’t afford medications or supplies. Many doctors are willing to help their patients get what they need.
“I think it is equally important that providers always ask the question as well: ‘Are you having a hard time getting the medications or supplies that you need?’” Mizokami-Stout said.
Mizokami-Stout agrees with the survey’s findings, and said that the altruism in the type 1 diabetes community is high. Many people aren’t looking to make money, but to pay it forward and help people without the resources.
“If people have extra of something that someone else needs to live, and that other person expresses a need, they are typically very willing to share,” Mizokami-Stout added.
Mizokami-Stout said she hopes people continue to share their stories, as it could help encourage policy changes to make diabetes supplies and medications more accessible. That way, people won’t have to “resort to using the black market,” she explained.
Though she doesn’t believe it’s okay to get some items on the black market, she believes it’s understandable why people go to great lengths to get the medications and supplies they need.
Although there are programs to assist with getting products, Bailey said they still create gaps in care to the most vulnerable people — namely, those without insurance.
“This is really a systemic issue — the exorbitant prices of insulin and barriers that make accessing the needed supplies and medications for diabetes are systemic issues that need systemic answers,” Mizokami-Stout said.
That’s why she found the report so eye-opening. “Not only is use of the ‘black market’ common but it’s common because it’s a necessity,” Mizokami-Stout added.