Maine would join Colorado – and possibly other states considering similar reforms – to cap the out-of-pocket cost of insulin for diabetes patients if a bill promoted by the state’s top Democrats becomes law next year.

Diabetes is one of the most common chronic diseases. Thirty million Americans and 142,000 Mainers have diabetes, about 10 percent of the population.

In addition to Maine, bills to cap insulin costs will be considered next year in Massachusetts, New Hampshire, Illinois, Wisconsin and likely other states.

The Maine bill – sponsored by House Speaker Sara Gideon and backed by Gov. Janet Mills – would cap costs for patients to a “reasonable” amount, although what that cap would be has not been determined yet. If it’s similar to the Colorado bill that inspired Gideon, the cap would be about $100 monthly, or $1,200 per year. Annual costs for insulin increased from $2,864 to $5,705 per patient from 2012 to 2016, according to a recent study by the Washington-based Health Care Cost Institute.

With the increase in high-deductible insurance plans, many families are shelling out several thousand dollars per year to treat diabetes, even though they have health care coverage.

The insulin price is much lower in other countries, such as Canada, where it costs about $30 per month. Maine approved a law this year that would allow drug importation from Canada, but the new law requires federal approval before going into effect.

About 30 percent of American diabetes patients ration their insulin because of high costs, according to a study released in January in JAMA Internal Medicine, a scholarly journal. In one high-profile case, a 21-year-old Minnesota man died from rationing his insulin last summer, according to news reports.

Maine House Speaker Sara Gideon Joe Phelan/Kennebec Journal

“In the absence of meaningful federal action, we need to do this to bring down the cost so people can have access to this medication,” said Gideon, D-Freeport, who is running in the Democratic primary for a chance to challenge incumbent U.S. Sen. Susan Collins in the November general election. “If patients are rationing insulin, they are putting themselves in mortal peril to save money. They shouldn’t have to make that choice.”

Mills spokeswoman Lindsay Crete said in a statement that “the governor believes it is appropriate for the state to act when the federal government has not, to cap deductibles, copays and other out of pocket expenses for people whose lives depend on this product.”

Kate Brogan, a Portland attorney, said that although she can afford insulin for her son, Nathan, who has diabetes, the costs are “crazy” and many others are not in as fortunate a financial situation as her family. Still, Brogan said, she is carrying a “substantial” credit card debt because of the high insulin costs, and other costs for treating diabetes, including pumps and glucose monitors, are also expensive.

Brogan, a single mom, said her family meets the $7,000 out-of-pocket maximum every year.

“The thing that’s so furious for me is that it only costs $6 to make an insulin vial,” Brogan said. “They’ve got us. We have no choice. We have to buy this medicine.”

Hilary Koch of Waterville said she didn’t want to go into detail about her finances, but her family is spending thousands of dollars every year for her son, Leo, who has diabetes.

“Our medical bills every year are crazy,” said Koch, who plans to run as a Democrat for a Maine Senate seat next year. Koch said she was inspired, in part, to run for office because of the high cost of insulin. “The system feels like it’s working against you.”

There did not appear to be substantial opposition to the Colorado bill, which passed by wide majorities in the Colorado House and Senate, although some industry groups objected. Health policy experts in Colorado noted that if insurance companies have to bear the price increases for insulin, there could be cost shifting, resulting in higher premiums and health care costs.

Gideon said she understands the limitations of the approach, and that tackling drug costs for one medication does not resolve the underlying problems with the high costs of prescription medications.

But Gideon said regulating the cost of insulin is something Maine can control, and the state should do so for a drug that is a life-or-death matter.

A representative from the Pharmaceutical Research and Manufacturers of America trade association declined to comment on Gideon’s proposal because the full details have not yet been released.

At the federal level, a Lewiston woman testified in March before the U.S. Senate’s Aging Committee that she has trouble affording insulin, and has called 911 numerous times because she couldn’t afford a glucose monitor. Sen. Collins, who chairs the committee, said in March that the woman’s situation was “dangerous, untenable and, ironically, more expensive.”

Collins backs a federal bill, called the Insulin Price Reduction Act, that would not set a cap but would provide incentives for insulin manufacturers to reduce insulin prices.

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