Jeremy Krsak remembers growing up with Type 1 diabetes, when he and his family would go to the drug store, grab a bottle of insulin out of the refrigerator, bring it to the counter, pay $20 cash and be out the door.
That doesn't happen anymore.
When the DeMotte man lost his job last October, he discovered his out-of-pocket cost for insulin had gone up 14 times that amount.
"I went through a period where it was kind of hard, where I didn't know how I was going to get the insulin for the next month," the 41-year-old said.
He tried the $20 insulin available from Walmart, but said it's an older form of the drug and not as effective.
He admits he's luckier than most. His mom, while not rich, helped him pay the $285 per month for his medication.
"It kind of degrades you a bit," he said. "People don't understand. It's not like we take a pill and there's a generic form of the pill. It's not the same.
"We got 24 to 48 hours (without insulin) and we die. It's not like we go through withdrawals."
He eventually suffered complications from his diabetes that left him disabled — not from a lack of medication, however — so Medicaid now picks up the cost of his insulin.
"If there's any way I can possibly help future generations not to have to go through this ... I don't know the answer," he said, sounding exasperated. "It's a disease, and if you can't afford (the medicine) you're either going to get more sick or die."
Krsak isn't alone in America in not being able to find the money for his insulin. Depending on what study you're looking at, the cost of insulin has doubled to tripled over about the past decade alone. Research in the Journal of the American Medical Association revealed that while the United States uses only 15% of the planet's insulin, the country accounts for about half of the drug's revenue worldwide. The same publication found as that many as a fourth of diabetes patients are cutting back or going without their medication because of the pricetag.
Lowering drug prices likely requires a political solution. The United States, unlike many other countries, doesn't regulate the cost of new drugs, nor negotiate prices directly with insurers. Some legislatures have proposed capping the cost of insulin, Colorado being the first state to enact such a law.
Luckily, there are programs and resources available locally for Northwest Indiana residents struggling to afford their diabetes care.
At HealthLinc, a community health center with locations around the Region, many patients quality for a federal program called 340B that gives deep discounts on drugs to hospitals and clinics that serves low-income populations.
"Ninety-eight percent of the time that allows us to get patients what they need at an affordable price," said Lynn Thoma, director of pharmacy for Valparaiso-based HealthLinc.
If that isn't an option, Thoma said she uses the discount programs offered directly by drug companies.
HealthLinc also offers free diabetes counseling, with assistance monitoring meals and exercise. "Patients often have no idea this program exists," Thoma said. "It's kind of a hidden gem."
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She noted that having pharmacies onsite help. After HealthLinc's Michigan City clinic got a pharmacy in early 2016, the number of patients with uncontrolled diabetes went from 55% to less than 30%.
Alexis Riley, case manager supervisor for NorthShore Health Centers in Portage, said she usually assists patients financially by going directly through the pharmaceutical companies. She said she recently got two patients each a free year's worth of insulin that way.
And her health centers' pharmacies often have heavily discounted diabetes supplies, she noted.
NorthShore also has diabetes education and dining classes, as well as in-house foot and eye exams for diabetics, she said.
"We try to do whatever we can to help patients, regardless of whether they have insurance or not. We try to help everybody," she said.
Carol Sakelaris, certified diabetes educator for Methodist Hospitals in Gary, said she refers patients to Eli Lilly's Lilly Cares program for free or low-cost insulin; Roche's Patient Promise program for free or cheap blood-glucose testing supplies; Meijer pharmacy for free metformin (the most commonly prescribed oral diabetes medication); Walmart pharmacy for other low-cost meds; and local township offices for free medicine and supplies.
"Patients should not have to go without medications due to cost but often do," noted Koula Tsahas, director of pharmacy at St. Catherine Hospital in East Chicago. "Specifically for diabetes, there are several medications available as generics, which are as effective as brand name medications at a fraction of the cost."
She also refers patients to patient-assistance programs, copay coupons and savings cards on drug manufacturer websites, as well as discount cards from programs like AARP, NeedyMeds, GoodRx, RxAssist, FamilyWize and MedicalAssistanceTool.org. She also helps people access free glucometers and special pricing on diabetic supplies.
"We treat our patients as family members always, and our care continues even when they go home by offering free medication delivery at St. Catherine to prevent patient going without medications," she said.
Dr. Janet Seabrook, CEO of Gary-based Community Healthnet, said her centers' patients get discounted medication also through the Lilly program — a free year's supply of insulin mailed to the clinic every three months — and from CVS and Walgreens through the 340B program.
Community Healthnet also aims to educate the community on diabetes.
"Patients that require insulin injections are shown how to inject their insulin," Seabrook said. "Meals are discussed, exercise benefits. We have at times had the Purdue extension staff come to cooking demonstrations."
Dr. Rujuta Gandhi, medical director for Regional Health Clinic in Hammond, said her facility helps patients with medications through the 340B program and drug makers, and offers visits, labs, and foot and eye checkups on a sliding-scale fee basis, as well as diabetes education. That includes the Shop With a Doc program at Strack & Van Til in north Hammond.
"We try and provide a very comprehensive approach to tackling diabetes," Gandhi said. "We focus on preventive health care to keep you from getting diabetes."
Joshua Sherron, 37, of Valparaiso, said his insurer declined to pay for his diabetes medication because it wasn't on their list of covered medicines, as well as his testing strips, because he's not on insulin. Sherron, who works in hardware distribution, said his doctor has recommended against using insulin because his Type 2 diabetes isn't far enough advanced.
So he had to pay $400 a month out of pocket for his treatment.
His pharmacy recently connected him with a discount program from the drug company that covers the cost of the medication, at least for the next four months. Even though he got the assistance, he's still frustrated he was charged so much for medicine he so desperately needs.
"There is absolutely no reason why the same prescription drugs should cost a fraction of the price in another country," he said.