Diabetics are turning to the black market for essential insulin at a time when costs are becoming ever more complex and supply chains are blamed.
On average, insulin prices have more than tripled over the past decade to $98.70 per vial, with Americans now paying ten times more than other similar countries.
It is feared that high prices and shortages have forced thousands of desperate patients onto social media groups where they are trading drugs for cash.
There have been reports of some doing illegal business in parking lots and receiving hidden packets of the drug in applesauce packets.
In some cases, diabetics say they are being forced to choose between paying rent and buying insulin, while others say they travel to Canada to do so.
The high price of diabetes drugs has forced thousands to turn to the black market for supplies. It even includes policyholders who are still saddled with high deductibles and co-payments
Above is the average price of an insulin vial in America and similar countries. Analogous insulins are very similar to human insulin but with some changes, while human insulin is derived from humans. Modern insulins are made in laboratories using microorganisms such as bacteria or yeast to produce the hormone. In the US, the average price of a vial of insulin is about 10 times that of a similar country
One patient – Erik Douds, 31, a videographer – even moved to India for two years because the cans were so much cheaper there, at $6.70 each.
While a $35 price cap was introduced for Medicare patients last year, it only covers a portion of Americans who need the drug on a daily basis.
President Joe Biden called for extending the price cap to all patients during his State of the Union address, but it’s unlikely to pass the Republican-controlled Congress.
Many GOP members argue that the cap would discourage advances in medicine.
Statistics show that about 34.2 million Americans — or 10 percent of the population — have diabetes.
But that number has risen nearly 50 percent over the past eight years, in part due to rising obesity rates, a major contributor to type 2 diabetes.
On average, diabetics need to inject insulin one to four times a day to control their blood sugar levels.
If blood sugar is not kept under control, it can lead to vision loss, kidney problems and nerve damage, among other things.
Those involved in the illicit trade in diabetes drugs include Rena Rossi, 41, a Rhode Island teacher (right). She says she’s been shipping insulin to people in states like Colorado, Florida and Washington, with the vials hidden between packets of applesauce. She is seen above with Annalisa van den Bergh, 31, of New York City, who is also involved with online groups that provide insulin
The cost of insulin has steadily increased since the 1970s, even though the cost of manufacturing the drug has remained the same.
Experts say this is due to the complex chain to get the drug to patients – involving healthcare plans, manufacturers and pharmacies.
Manufacturers have also engaged in “evergreening,” where they slightly tweak the formula or method of administration of insulin, which drives up costs.
Those involved in the black market for diabetes drugs include Rena Rossi, 41, a teacher in Rhode Island.
She was diagnosed with a rare type of diabetes five years ago and was quick to connect with others who had the condition online.
But it quickly became apparent that many patients were also looking for others who might have spare insulin doses.
She told NBC News, “I knew I would share if I saw a need. That’s how the community works.”
Revealing how she’s acting now, she said: “I’m at the point now where I’ve been getting messages on Instagram from people I’ve never heard of because people know I know people, have the things.
“I sent it to friends in Colorado, Florida and Seattle and mailed it [insulin] to people I didn’t know.’ She also admitted to posting doses of insulin hidden between packets of applesauce.
There are no official estimates of how widespread the diabetes drug trade is, but stakeholders say it’s in the thousands.
One of the few data available comes from a 2019 survey of 160 people who had dealt in diabetes products.
Of these, nearly 60 percent said they had donated at some point, while nearly 40 percent had received supplies from others.
dr Michelle Litchman, a diabetes expert at the University of Utah at Salt Lake City who conducted the study, said: “One of the things that surprised me the most was that people who had insurance did.
“Insurance doesn’t necessarily protect you from having to be involved in this type of activity because even with insurance, the co-payments can be outrageous, and they add up.”
Among those struggling to get insulin is Erik Douds, 31, who has type 1 diabetes. He said he moved to India for two years because the price of insulin was so much lower there
Technically, it is illegal in the United States for non-physician prescribers to give someone else a prescription drug or medication.
However, diabetics say the huge barriers to accessing treatments have left many feeling they have no choice but to help.
Among patients struggling to afford insulin is Mr Douds, now 31, who was diagnosed with type 1 diabetes as a teenager.
After his parents’ insurance plan stopped covering him, Mr. Douds told NBC News that he was forced to turn to the online community in New York City for supplies.
As he rode his bike across the US, he had to rely on the community for help.
In one instance, he ended up meeting another diabetic in a California parking lot to get transmitters for his glucose meter.
Mr Douds also moved to India for two years in 2020 after realizing insulin was much more affordable in the country.
There he paid $6.70 per bottle compared to the US average price of $98.70.
Others struggling to afford treatment include Mila Clarke Buckley of Houston, Texas, whose pancreas is slowly being shut down by an autoimmune disease.
She told Rand Corporation in 2019, “It comes at a high cost, not just financially, but in terms of your life.
“It’s not like you can just stop taking insulin one day. You really have to manage your life and think, OK, that’s my top priority, getting that little pen of liquid so I can live.
In 2019, it was also reported that dozens of Americans had begun traveling to a Walmart in southern Ontario to snag diabetes medication at about a tenth the price in the US.
A survey by the American Diabetes Association also found that nearly a third of diabetics had no choice but to postpone a doctor’s appointment or defer bills to afford insulin.
A quarter said they missed a rent or mortgage payment
Last year, the Inflation Reduction Act capped insulin costs for Medicare beneficiaries at $35 per month.
This is almost a third of what members originally paid, although it is still above prices even in the second most expensive industrialized nation.
Others, however, have been left at the mercy of insurance companies and drug companies.
In his State of the Union address, President Biden called for a cap on all insulin to $35 per vial.
He said, “There are millions of other Americans who don’t or don’t take Medicare, including 200,000 young people with type 1 diabetes who need this insulin to stay alive.
“Let’s finish the work this time. Let’s cap insulin costs at $35 for everyone.”
America’s Health Insurance Plans, or AHIP, a trade group representing insurance companies, did not respond to a request for comment.
WHY IS IT IMPORTANT FOR DIABETES PATIENTS TO MEASURE THEIR GLUCOSE LEVELS?
Diabetes is a serious lifelong condition that occurs when the level of sugar in the blood is too high because the body cannot use it properly.
Patients need to monitor their glucose levels regularly to prevent them from developing potentially fatal complications.
Patients with type 1 diabetes are often advised to test their blood sugar at least four times a day. For type 2 patients, doctors advise testing twice a day.
The blood sugar level should be between 3.5 and 5.5 mmol/l before meals and below 8 mmol/l two hours after meals.
Diabetes patients need to monitor their glucose levels regularly to prevent them from developing potentially fatal complications
Hypoglycemia (when blood sugar falls below 4 mmol/L) can occasionally cause patients to fall into a coma in severe cases.
Most often, however, it can be relieved by eating or drinking 15-20g of fast-acting carbohydrates such as B. 200 ml Lucozade Energy Original.
Affected people recognize hypoglycaemia when they suddenly feel tired, have difficulty concentrating or feel dizzy.
Patients with type 1 diabetes are more likely to have hypoglycaemia because of the medications they take, including insulin.
Hyperglycemia (when blood glucose is above 11.0 mmol/L two hours after a meal) can also have life-threatening complications.
It happens when the body either runs out of insulin, as in type 1, or isn’t using its supply properly, most commonly in type 2.
In the short term, it can lead to conditions like ketoacidosis, which causes ketones to be released into the body.
Left untreated, hyperglycemia can lead to long-term complications such as impotence and limb amputations.
Regular exercise can help lower blood sugar levels over time, and a healthy diet and proper meal planning can also avoid dangerous spikes.