“Any chance I get, on the airlines, to give up my seat to get a gift card with cash value on it, I give it up—for this,” said Doug Adams, a North Logan father of a college freshman with type I diabetes. “I have looked at prices around the world and it's a fraction of what we pay. A fraction. I travel to Europe and to India quite frequently and every time I go, I look. And I try to find what is the latest. And it's amazing the cost difference. It really is.”
Munson: It makes one consider bringing an extra empty suitcase.
“If insulin didn't have to be refrigerated, I would,” he said. “I would take a whole suitcase. To your question about do people shortcut? Absolutely. They will reuse the canisters, they'll reuse anything they can that doesn't cause an infection in the body.”
For his son Brig, insulin is his lifeline. Brig's pancreas no longer produces insulin, a hormone necessary for absorbing glucose from the bloodstream that the body's cells use as energy. Without insulin, he would die. And without being covered under his parents' health insurance plan, Brig wouldn't be able to afford his medications or college.
“Before the out-of-pocket max, he wouldn't be able to go to college,” Adams said. “He's got scholarships, but the pure cost of all of that … When we order supplies for the pump, we will spend just on the insulin order itself $300 to about $400 for a 90 day supply of insulin—that's just the insulin, that's not the tools to go with it.”
Brig can stay on his parents' health insurance plan until age 26, which makes acquiring his supply of insulin and testing equipment easier to manage for the time being. For his parents, that's critical so Brig can focus on other important things: like studying for his civil engineering degree. But the rising cost of drugs like insulin has many diabetics rationing medication or skipping doses entirely.
Brad Chambers, an internist at Intermountain's Budge Clinic knows a number of his patients—diabetic and with other chronic conditions—who make annual treks to Mexico or Canada to purchase the medications they need because they can't afford them here at home. Chambers can sometimes see the cost of prescription drugs reflected in patient charts.
“Towards the end of the year, probably from here on out Chambers we will see patients' compliance start to fall off, especially as Medicare patients get into what's called the doughnut hole and now those costs for medication are bumped back to the patient. We see patients not taking what's prescribed, or try to take every other day dosing, or cut things in half because they are worried about cost.”
But, Chambers says, diabetes appears to be the biggest cost burden for his diabetic patients.
“We will see controlled numbers for the first half of the year and as we get into this latter half we see what's called the hemoglobin HbA1c start to rise, blood sugars are uncontrolled and that's because patients are either not taking or trying to cut down on the units of insulin that they take per day mainly because they are trying to get their insulin to last longer than it really should,” Chambers said.
Over time, uncontrolled blood sugar levels can result in serious health complications such as blindness, end-stage kidney disease, the amputation of limbs, and even death.
David Mitchell is a cancer patient and the president of Patients for Affordable Drugs.
“A huge proportion of the stories we have collected—we have 14,000 patient stories—are about insulin,” said David Mitchell, a cancer patient and the president of Patients for Affordable Drugs. “We have patients who have died recently while running GoFundMe campaigns to be able to afford their insulin. The fact is that there are three insulin manufacturers who now have control of the insulin market and they have increased the price of insulin 300 percent in the past 10 years.”
Mitchell's non-profit has one aim: to lower the cost of prescription drugs in the United States. He suggests three legislative pathways to cut costs long-term: allow Medicare to negotiate directly with drug companies, greater transparency and net price disclosure by pharmacy benefit managers to ensure that savings actually get passed down to consumers, and lastly, reforming the country's patent laws, which he says can stymie competition when they are abused by drug companies blocking generic drugs from coming to market.
“There are a variety of tactics that the drug companies use to block competition, extend their monopoly beyond what was intended under law, and keep prices incredibly high,” he said. “They patent the instructions, or they patent the food coloring in the capsule or tablet, or they change the dose from twice a day to once a day and call it a whole new drug. Another tactic is they enter into pay for delay deals—pay a generic drug manufacturer not to bring the generic to market, and the generic manufacturer gets a piece of the monopoly pricing power that the brand company enjoys.”
Utah Representative Norm Thurston, a trained economist, agrees that much of the problem with rising drug prices stems back to the nation’s patent laws, which he says historically rewarded innovation, but break down with 21st-century problems like pharmaceutical pricing. One piece of legislation he proposed to curb costs at the state level was to allow the importation of drugs from Canada.
“I've been part of a national working group on how states can address pharmacy costs and that was one of the recommendations that came out of the workgroup, and it seemed to be the most timely and the most promising,” he said.
While the bill ultimately failed to pass, the state did agree to move forward with a study to determine if the measure could be implemented safely and work to lower costs. Results are due back in October.
“It's a lot easier to help people get on board when you have a study and results and recommendations that are backed up with information,” Thurston said. “At the end of the day, if we have a study that shows there is a path forward and this is what you can do and it can be safe, it becomes a lot more difficult for people to argue that it's a bad idea.”
Thurston is exploring additional measures before the next legislative session, including bills that increase transparency in drug pricing and the notice given by pharmaceutical companies before they raise rates.
“If a pharmaceutical company is going to raise the price of a drug, they have to give notice—and maybe even along with that justification—you have to give us notice that you intend to raise the price of a drug and you have to tell us why,” he said. “At least we would know what's going to happen and some clue as to why it's going to happen.”
Support for Diagnosed has been provided in part by our members and Intermountain Budge Clinic, a multi-specialty clinic offering care for every member of your family in one location. Details found here.