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updated: 7/15/2019 7:01 PM

Families describe challenges from rising cost of insulin

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Bill Schreier's wife and their two sons manage their Type 1 diabetes with an overwhelming routine.

Each month, Jennifer Schreier and her teen boys need six prescriptions of insulin and 12 other scripts filled -- not to mention diabetic supplies.

But the lifesaving treatment has become burdensome for another reason: the cost of insulin.

The Schreiers, who are both teachers, have health insurance, but the three diabetics in the Naperville family are no longer able to use their insulin of choice because of the cost. Schreier said his wife and sons now depend on a brand "that does not work best with their bodies and their body chemistry."

"As a result, our youngest son has seen increases in his blood sugars," he said. "However, we are paying so much between all the supplies and doctor appointments, we cannot seem to justify paying an additional $600 per month per person for the more effective insulin."

Schreier drew attention to those challenges during a news conference held by U.S. Rep. Lauren Underwood Monday in Plainfield to show the human toll of climbing insulin prices. The issue has spawned congressional hearings and headlines about diabetics who have died after rationing their doses of insulin, a drug in commercial production for almost a century.

"People in our community are knowingly making themselves sicker because they don't have any other choice," said Underwood, a Naperville Democrat. "Their medicine is unaffordable. The market's broken, and while we've taken steps in Congress this year to decrease prescription drug costs, we need to do so much more."

Underwood held the gathering at the Edward-Elmhurst Health Plainfield campus to discuss a report by the House Oversight and Reform Committee on the prices of diabetes drugs for seniors and uninsured patients.

The analysis estimated the 14th Congressional District -- covering parts of DuPage, Kane, McHenry and Lake counties -- is home to roughly 15,000 Medicare recipients diagnosed with diabetes and 36,000 uninsured residents. The 10-page report showed drug prices are far steeper than the costs of diabetes medications in countries where governments have the authority to directly negotiate with drugmakers.

For instance, the costs to Medicare for the 50 most-popular diabetes medications are 4.9 times higher than the costs of the same drugs in Australia, 3.6 times higher than the United Kingdom and 2.7 times higher than in Canada.

Diabetes patients who don't have health insurance in the district pay on average $493 for a monthly supply of Lantus SoloStar, one brand of insulin, compared with $33 in Australia, $51 in the United Kingdom and $70 in Canada. Those patients also pay an average $632 for a monthly supply of NovoLog FlexPen, another insulin brand, compared with $28 in Australia, $42 in the United Kingdom and $47 in Canada.

Earlier this year, three insulin manufacturers -- Sanofi, Eli Lilly and Novo Nordisk -- faced congressional scrutiny over the surge in prices of drugs that control diabetes, a chronic disease that causes the body to stop producing its own insulin, a hormone that regulates blood-sugar levels.

"Just three manufacturers control about 96 percent of the market, and the prices charged by these three manufacturers often increase in lockstep," said Underwood. "Insulin has been on the market for almost 100 years. Since then, scientific breakthroughs have dramatically improved the quality of insulin products but at sky-high prices."

Proposals for direct price negotiations between the secretary of Health and Human Services and those drug companies "certainly merit some attention and examination," Underwood said. She also has called for making "maintenance medications" more affordable or free during the gap when patients have yet to meet their insurance deductible.

A Novo Nordisk spokeswoman said in a statement that the company offers a patient assistance program that provided free insulin to nearly 50,000 people last year. But the House committee report indicated such programs can be "difficult to access and are not guaranteed."

"While a growing number of patients are exposed to list price as a result of changes in insurance benefit design, it is important to recognize that list price does not reflect the cost or out-of-pocket expense at the pharmacy counter for the majority of patients," the Novo Nordisk spokeswoman said.

Schreier, the Naperville dad, said out-of-pocket caps seem like a "manageable" start to address costs.

"Like many Americans with Type 1 diabetes, we have had to make sacrifices and make due with what we can afford," he said.