Patient-carried medicine 4 FILE PHOTO

Bailey Johnson (center) walks to her father's truck with friends after school in September 2017. Unlike her friends, her backpack contains a bag of medicine she could need in emergency situations. File photo

COURTLAND — Deann and Curtis Johnson had high hopes for this year's legislative session.

Their daughter, Bailey, has a rare adrenal gland disorder called congenital adrenal hyperplasia. In essence, it means her glands lack the necessary parts to produce hormones that regulate various body functions, such as her metabolism and immune system.

The Johnsons carry around medicine for Bailey in case she has a sudden medical crisis, but paramedics and other emergency responders aren't legally allowed to administer that medicine. They can give simple medicine such as an Epipen, but only doctors can administer more complex medicine.

The Johnsons have worked with local lawmakers to pass a bill that would allow paramedics, EMTs and other emergency personnel to give medicine to Bailey if she were ever in a medical crisis. Though they faced some roadblocks with the bill's language last year, they were hopeful about this year's legislative session.

Unfortunately for the Johnsons, their bill was included in the omnibus budget Gov. Mark Dayton vetoed Wednesday.

"We were disappointed, of course," Deann Johnson said. "We kind of expected it to be coming."

The paramedic bill was among numerous policy changes and budget issues that garnered bipartisan support from the Legislature this session.

Rep. Clark Johnson and Sen. Nick Frentz, both DFL-North Mankato, successfully worked with medical industry lobbyists to address liability issues the bill could bring up. Emergency personnel often work under a physician's license, which means the physician or ambulance service could be held liable if an emergency responder makes an error by giving patients the wrong kind of medicine. 

The local lawmakers eventually ensured the bill would cover patients with any kind of rare disease. They found support from legislators across the state who represented families with similar concerns.

In the House, Rep. Julie Sandstede, DFL-Hibbing, told her colleagues she had a similar rare medical condition that required an action plan similar to Bailey's. Yet her plan relied on her son, who is in fifth grade, to administer her medicine. 

Sen. Torrey Westrom, R-Elbow Lake, had a family in his district with similar concerns. He helped push the bill through the Senate by getting it attached to the omnibus budget bill. The Senate also voted to add the bill's language to licensing legislation, but the House never took up that issue.

Though the paramedic measure survived as part of the omnibus budget bill, Republicans also included measures Dayton opposed. Last week, Dayton's office publicly released a list of 117 issues the governor didn't want in the budget and tax bills. Republican lawmakers eliminated more than half of those measures, but Dayton told the Legislature he would veto any bill that contained those issues.

The GOP-controlled Legislature tried to call his bluff over the weekend by passing both the tax conformity and omnibus budget bills, but Dayton made good on his promise Wednesday morning.

"This was an opportunity lost because of the way that politics are played that affects the real lives of real people," Clark Johnson said. "In this case, a young girl from Courtland, but there are other people in our district as well. This is a life-saving measure, and so when we're talking about all those political games, it gets very real. And so it's not only about politics and who wins and who loses, it's Minnesota citizens who are in really some dire circumstances ... that sometimes get neglected. And you just can't justify that."

The Johnsons still have hope lawmakers will pass their paramedic bill in 2019. Since sharing their story publicly last fall, they've testified at the Capitol and met other families that need the same sort of legislation.

Deann Johnson said she and her family have learned a lot about the legislative process. As she puts it, being in the political world is out of their comfort zone, but it's necessary if she and her husband can help Bailey thrive.

"For the last eight years, Bailey has to endure discomfort regularly," she said. "She medicates, gets poked and prodded, and has had several uncomfortable procedures, but she keeps moving forward. ... We continue for Bailey."

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