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Despite solid votes for insulin help, it falls out of final budget deal

Nicole Smith-Holt and James Holt discuss the cost of insulin and how their son, Alec Smith, died after rationing his medication on Tuesday, Jan. 22, 2019, at the state Capitol in St. Paul. Minnesota lawmakers are pushing a raft of insulin-related bills this session. Brian Bakst | MPR News

Heading into final budget negotiations, both the House and the Senate passed bills with overwhelming majority votes to start addressing the rising cost of insulin.

The House and Senate positions differed slightly, but they had the same goal: establish an insulin manufacturer’s registration fee to help people pay for insulin when they can't afford it on their own.

That's why Matt Little was so surprised on Thursday to hear the provision was nixed in closed-door negotiations on the health and human services budget.

"We kind of thought the job was done because we got it in the budget bill and it had broad bipartisan support," said Little, a DFL senator from Lakeville.

The news first broke on Twitter: DFL House Health and Human Services Chair Tina Liebling tweeted that the Senate killed the bill in "final hours of negotiation."  Senate Health and Human Services Chair Michelle Benson, a Republican, shot back: "You gave us a spreadsheet without insulin program on it. (First offer.) I didn't notice, even in the several back and forth offers. We all closed the spreadsheet."

In an interview, Liebling said the insulin provision wasn't just a mishap on a spreadsheet. She said Rep. Laurie Halverson, DFL-Eagan, was working on compromise language with Benson throughout negotiations. At midnight on Thursday, Liebling said she asked Benson directly, "are we going to get a deal on insulin? And she said: No."

"This is not about politics, this is about life and death for a lot of people," Liebling said. "No Minnesotan should ever die from the lack of an essential drug that we have, that's available, that they just can't afford to buy it. We need to do whatever we can to make sure that doesn't happen again."

In a statement released Thursday afternoon, Benson said putting together the bill was challenging "for everyone involved."

"This cost of insulin has been turned into a political punching bag to the detriment of patients, and I find it disingenuous for Rep. Liebling to immediately blame others for a specific provision being left out of the bill," she said.

Benson said there were other measures in the bill aimed at reducing the cost of insulin and other prescription drugs.

Both Liebling and Little said there's still time to amend the health and human services budget bill to include the measure.

"I don't care how it got removed, I don't care about the back and forth," he said. "I think just an extra five minutes, go back in there, add it as an amendment to the agreement...just a few minutes will save lives."

But Benson said there's not time to change the proposal. "Millions of Minnesotans are depending on us to finish this bill and we need to move forward on the agreed upon budget," she added in the statement.

The Legislature adjourned the regular 2019 legislative session on Monday without a budget deal in hand. Leaders have spent the days since filling in details behind closed doors ahead of an eventual special legislative session to pass a new two-year budget.

The insulin proposal picked up steam this year after a handful of citizen lobbyists held press conferences and flooded hearings. One of those people was Nicole Smith-Holt, whose son Alec Smith died at the age of 26 after he rationed insulin that he couldn't afford. She said the news Thursday morning was "heartbreaking."

"I want to know the truth," she said. "Was it a technicality, was it an omission, did somebody drop the ball?"

Smith-Holt was particularly frustrated that the provision was killed in closed-door talks after pushing so hard for it to pass all session -- and out in the open.

"In 2019, we should have a level of confidence and a level of transparency that these shady transactions don't even exist at this point. They are rushing so much that things are falling through the cracks. Bad things can happen," she said.

"I want to say it's typical of politicians, but it feels really personal," she added. "We are going to double up our efforts and we are going to come back bigger and  stronger next session."

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