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Many people with diabetes in Kentucky won't benefit from $30 cap on insulin. Here's why - Courier Journal

A new law now effective in Kentucky will have a big impact on insulin prices for some people living with diabetes. But advocates and others in the commonwealth's diabetic community are pushing for lawmakers to do more to open access to a medication that thousands in the Bluegrass State need to survive.

Under the new rules, the cost of a 30-day supply of insulin will be capped at $30 for "those with state-regulated health care plans or plans purchased on the marketplace exchange, state employees and people under group plans," according to a release from the state.

The law, stemming from a bill first put forward two years ago by state Reps. Danny Bentley and Patti Minter, was signed by Gov. Andy Beshear last March after being approved by the Kentucky legislature on a unanimous vote. It went into effect Jan. 1. 

It has been lauded as a positive step for many who live with diabetes, including state employees and those who bought insurance through kynect, Kentucky's state-run site for those seeking to apply for insurance coverage.

In a statement last March, after Beshear signed the bill into law, the American Diabetes Association applauded the move as one that would "reduce the financial burden for Kentuckians on state-regulated health plans so they will not have to choose between insulin and utilities, rent, or food."

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Some advocates, though, said the law is too narrow and won't impact the vast majority of people living with diabetes in Kentucky who have health insurance plans through their employers or through sources like Medicare or TRICARE, which applies to U.S. military members and veterans. More action needs to be taken, they said, at a national level.

"The problem is that a state can't pass a law that would affect anything that's federally regulated, and most people have health insurance that's federally regulated," said Sarah Ferguson, a Kentucky advocate whose daughter was diagnosed with Type 1 diabetes at age 14 more than a decade ago. "It wouldn't cover you if you have Medicare, which a lot of people with Medicare struggle with insulin pricing, or basically any other health insurance plan."

There are currently 440,000 residents who are covered by state-regulated health insurance plans, according to the Kentucky Department of Insurance, and U.S. Census data shows 7.7% of Kentuckians are currently uninsured, or about 345,000 people. The U.S. Department of the Treasury did not respond when asked Tuesday how many people in the state are covered by federally regulated insurance plans, including Medicaid, but it's a number that sits in the millions.

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'It's not $30' for many with diabetes

In a Twitter post Sunday afternoon, Rep. Minter said the bill signing in March was her "favorite 2021 moment" and that in 2022, "insulin copays under most health insurance plans will be capped at $30 a month."  And in a social media post of his own Monday morning, Beshear said the copay cap would "support every Kentuckian who has had to risk their life or be afraid of permanently damaging their health because they could not afford insulin."

But Ferguson said that language is misleading. It doesn't apply to those who are covered by federally regulated health insurance plans – including Medicaid, which covers about 1.6 million people in the state – or those who are uninsured.

"It's just not true, and it's extremely hurtful," she said. "People are going to go to the pharmacy and think 'Oh, it's $30 now,' but it's not. For (many) of the people who need help, it's not $30."

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Angie Summers, for instance, won't see any new savings next time she heads to the pharmacy. The Louisville woman has lived with Type 2 diabetes since she was 20 and has seen firsthand how it can wreck the body, losing both of her legs to the condition in recent years. "I left the hospital after I had my (first) amputation," she said, "and I still couldn't afford insulin."

Summers has brought her story before lawmakers in Frankfort before and said she's spoken directly to Beshear about issues facing those with diabetes. A copay cap for residents with state-regulated insurance plans is a good step for the people who will be impacted, she said, but a large number of people with diabetes in Kentucky are still left out in the cold.

"It's affecting too many people," Summers said. "I know they've got the cap, which is great, but it's helping a small, small percentage. And I know it sounds very greedy, a little selfish, but I'm like, 'Get back to me when it's going to help me.' I'm glad it's going to help some, but the fear is that they're going to see this as a fix-it, and it's not. My fear is that they'll be able to say 'See what we did!' and it'll be on the back burner again."

Minter, a Democrat from Bowling Green whose son was diagnosed with Type 1 diabetes as a toddler, understands the frustration. Passing the bill she sponsored alongside Bentley, a Russell Republican, with bipartisan support and no opposition was her proudest moment since being elected in 2019, she said, but she acknowledged the new law's limitations.

The fight, though, isn't over, she said, and with Kentucky legislators back in Frankfort, Summers and others who want to improve access to affordable insulin said lawmakers have an opportunity this winter to take a big step toward helping a wider portion of Kentucky's diabetic population.

Alec's Law considered in Kentucky

The legislature is in session and has a chance to act on Bill Request 53, a bill put forward by Minter and Bentley (who lives with Type 1 diabetes) which would allow people on other smaller or self-insured plans to access an emergency 30-day or 12-month supply of insulin at a reduced cost. Similar bills have been passed in Minnesota and several other states under the name "Alec's Law," in honor of Alec Smith, a 26-year-old Minnesota man who died in 2017 while rationing insulin he could no longer afford.

Rebecca Kelly, who serves as chapter lead of Kentucky's Insulin 4 All T1International advocacy group, pointed toward Kentucky's BR 53 as another step legislators can take to improve access to insulin, with chapter founder and legislative lead Angela Lautner calling it a "step in the right direction."

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Federal regulations, though, kept Kentucky lawmakers from going further with their copay bill passed last year, Minter said, and remain a formidable roadblock. State laws aren't able to affect federal programs, she said.

President Joe Biden's Build Back Better Act, which stalled in the U.S. Senate after being passed by the House of Representatives, included a proposed $35 monthly cap on insulin copays but is currently unlikely to become law. Minter encouraged constituents across the state to contact their representatives and push for action to be taken.

"People need to let their Congress members know that this isn't OK, that people need $35 for a 30-day supply," she said. "That could easily be done under Build Back Better, and it should be done, but that's beyond our control. Believe me, if I could change that through Kentucky law, I would do it tomorrow. We simply can't do it."

State lawmakers have good reason to take action to help constituents living with the condition. Kentucky has the seventh-highest rate of diabetes in the country, according to Baptist Health endocrinologist Dr. Manikya Kuriti, and she rarely gets through a day without hearing from a patient who's struggling to afford insulin.

The medication is "liquid gold," she said, and she often meets with patients who are unable to pay for it and instead have resorted to rationing their limited supply.

"Which medical condition do you do that?" Kuriti asked. "Is there any other medical condition where you say, 'Oh, I only took half of my inhaler,' or 'I only took half of my pill'? No. It doesn't work that way."

Kelly is optimistic about Alec's Law passing in Kentucky – "this is a humanitarian thing," she said, "this is not a Republican, Democrat or Independent issue." But as someone who's driven to Canada more than once to stock up on insulin at lower prices than are available for people without insurance in the U.S., she said she's seen firsthand the need for the federal government to take action.

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The insulin copay cap now in effect helps some people in Kentucky living with diabetes, but it doesn't help Summers, Kelly or thousands of others in the commonwealth. Pushing back against pharmaceutical companies that have continued to raise prices and instituting a federal price cap, she said, would make a difference for everyone.

"Right now, out of my pocket, it costs me about $300 a vial, and it's like that for a lot of people," Kelly said. "The ultimate problem is addressing the pricing directly from the manufacturers."

Lucas Aulbach can be reached at [email protected], 502-582-4649 or on Twitter @LucasAulbach.