Black market insulin: What you need to know

Millions of consumers are battling rising drug prices. But for diabetics who rely on daily medication, supplies and monitoring equipment, the problem can be particularly acute. 

Just last month two major insulin manufacturers, Eli Lily (LLY) and Novo Nordisk (NVO), each raised their insulin prices by 8 percent. On Thursday, Nevada Republican Gov. Brian Sandoval signed a law that would require pharmaceutical companies to disclose how they set insulin prices. Meanwhile, Washington watchers are expecting President Donald Trump to soon issue at least one executive order aimed at lowering drug prices.

Many health care experts worry that rising prices will exacerbate the already dramatic trend of buying insulin and other diabetes drugs on the so-called black or gray market. Adult diabetics and the parents of children suffering from juvenile diabetes who have trouble affording treatment are increasingly turning to the dozens of Facebook (FB) pages and other internet sites that act as a vital marketplace for people looking to trade, swap, buy and sell medicine, equipment and supplies.

"I cannot afford my insulin anymore. I have Lantus pens to trade for Novolog or Humalog vials/pens. Any help is appreciated!" reads one post on the website of digital diabetes support firm Helparound. A handful of people answered, some willing to trade, others offering advice on ways to afford the insulin the writer needs.

These networks often include trades based on insurance coverage. Some people may have insurance that covers one type of insulin, but their policy doesn't cover the brand that works best for them. They offer to swap a supply of the drug their insurance covers with people who may have coverage for the brand they're looking for. 

"We hear about people going to alternative sources all the time," said Ben Wakana, executive director of the nonprofit advocacy group Patients for Affordable Drugs. "But that's not a long-term solution. We're working on policy changes that will make diabetes medicine affordable so people don't have to turn to alternative sources." Along the same lines, the American Diabetes Association has launched its make insulin affordable campaign.

It's important for patients using these sites to remember that buying prescription drugs from strangers can be dangerous. "Insulin is a drug that must be taken at the right time and exactly the right amount," said Dr. Aaron J. Kowalski, chief mission officer at the Juvenile Diabetes Research Foundation. 

If insulin isn't stored (or shipped) at the right temperature, it breaks down and you risk getting into a high blood sugar situation after you take a dose of the improperly stored medicine, explained Kowalski. He noted several other complications related to temperature and storage as well.

Patients who use social media and other internet sources for lower-cost medicines often do so because they find themselves in a common but frustrating bind. They have insurance, but high deductibles and high co-insurance make managing diabetes unaffordable. What's more, because they have insurance of some kind, these patients don't qualify for discount drug programs and other industry initiatives designed for low- and middle-income patients. 

Black market buyers know safety may be an issue, but they also feel not finding affordable medicine is equally, if not more, risky. As one post from an insured individual put it, "I can't afford another trip to the ER simply because I don't have enough insulin."

Clayton McCook, an equine veterinarian from Edmund, Oklahoma, became part of this underground world when his daughter Lily, now seven years old, was diagnosed with type 1 diabetes when she was three. Like many parents in this situation McCook searched far and wide for every treatment and option that would make Lily's life easier.

That's when he discovered the extremely active internet market for life-changing technical and programming information that, in some cases, may be light years ahead of regulated market technology. 

Through various websites and internet contacts, McCook learned that if he bought an older-model insulin-monitoring device than the one he was using for Lily (he swapped for it online), he could tap into the programming other parents had done to continually monitor Lily's glucose levels without being in the same room.

The result was revolutionary. Now Lily could play down the hall or even in the yard without an adult constantly monitoring her glucose levels. McCook and his wife can now check in periodically on his laptop or special watch. This meant a new world of freedom for Lily and her parents. 

In addition, through various social media networks, including #wewon'twait, which McCook is extremely active in, he has taken advantage of software that makes Lily's insulin pump more responsive to hour-by-hour dosages based on her blood sugar readings. 

"I'm not a techie, but the people on this site worked with me for hours so that now when Lily is active or at rest, she's getting the exact right dosage from her pump based on the data the monitor is sending," said McCook. "It's amazing."  

Despite all the advances online, many diabetics need to know how best to get their drugs in an affordable way through traditional channels. Here are three things to keep in mind if you're dealing with the high cost of insulin and other diabetes drugs and supplies.

Don't be afraid to negotiate. If you or your child can tolerate only one type of insulin and it isn't covered under your insurance company's formulary (the list of drugs specific insurance policies cover) or it is covered but your co-pay is astronomical, you can appeal. Call your insurer and ask about the appeals process.

Find out if you qualify for discount programs. Pharmaceutical companies offer hefty discounts on all types of drugs for uninsured or low-income people. If you have insurance and are struggling with deductibles and co-pays, chances are you may not qualify for these programs, but it's always worth a try. In addition, it's important to simply make the call and find out what's available in your health condition category.

Be an informed online consumer. If you do buy, sell or trade drugs and supplies online, be smart about it. Make sure insulin is shipped in an iced container, and always determine the terms of the agreement ahead of time. If a glucose monitor you ordered arrives with a malfunction, make sure you have some recourse with the seller. Many participants in these sites subscribe to the "pay it forward" ethos: I'll help you now, and someone else will help me later. But it's always good to make the terms of the transaction clear.