THE COST OF treating her Type 1 diabetes for 15 years has taken a toll on Claire Clendenen’s life. Clendenen, who works in public health in Boston, just recently paid $700 for a three-month supply of insulin.

“Carrying around this huge fee on your shoulders, the cost, the accessibility, the constant fights with insurance companies, the phone calls to your doctor’s office. There’s so many hurdles that we have to jump through to live,” said Clendenen, the Massachusetts chapter leader of T1 International,  an organization that works to improve access to insulin and diabetes supplies.

A proposal before the Massachusetts Legislature would cap Clendenen’s cost at $25 for a 30-day supply of insulin. The bill won initial approval in the Senate and is now pending before the House. House leaders have not said if and when they will take it up.

Clendenen is not alone in her struggle. According to a 2019 study conducted by T1 International, 43 percent of young adults aged 18 to 25 with diabetes have had to ration their insulin, which could result in long-term complications for their health.

H.S, a Boston medical student who chose to be identified by her initials, was diagnosed with Type 1 diabetes in March of 2021. The diagnosis came as a shock. She had no relatives with diabetes, and although she had heard about the high costs of insulin, she had yet to experience them firsthand.

“Even with my health insurance, the price, when they were done wrapping everything up, I just couldn’t believe it,” she said. “How in the world am I going to be able to afford this amount of supplies, particularly the insulin, every single month for the rest of my life?”

Alyssa Vangeli, prescription drug policy expert for Health Care for All, a consumer health care organization, said she expects the bill, if it passes, would provide long-lasting relief for those struggling with insulin affordability.

“Addressing both direct out-of-pocket costs, through mechanisms such as capping co-payments for certain medications, in combination with efforts to address why prescription drugs are priced so highly in the first place will be an effective way to address prescription drugs costs both in the short and the long term,” she said.

Health Care for All partnered with the Massachusetts Prescription Drug Affordability Coalition to back the bill, which was sponsored by Sen. Cindy Friedman, an Arlington Democrat who co-chairs the Committee on Health Care Financing. Members of the coalition include individuals with disabilities, faith-based groups, mental health organizations, and health policy experts, among others.

The bill’s key provisions seek to give the state’s Health Policy Commission authority to engage drug manufacturers in reviews of drug prices to determine if prices are excessive. It requires drug manufacturers to be more transparent about their pricing. Among other provisions, the bill also seeks to increase oversight of pharmacy benefit managers, or PBMs, who serve as the middlemen between drug manufacturers and health insurance companies.

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