ST. PAUL — Nine-year-old Bailey Johnson had a simple message for lawmakers: She needed Minnesota's paramedics to be able to administer medicine that could save her life.
"My adrenal glands don't work like other kids," she said.
Bailey has a rare disorder called congenital adrenal hyperplasia, which means her glands lack the necessary parts to produce hormones that regulate body functions such as her metabolism and immune system.
Despite this, paramedics and emergency responders aren't legally allowed to administer the specialized medicine she requires in case she ever has a medical emergency. Bailey, along with her parents, Deann and Curtis of Courtland, testified before the House Health and Human Services Policy Committee Wednesday to change that law.
The Johnsons have worked with local lawmakers since 2016 on legislation that would allow emergency responders to treat Minnesotans with rare diseases. Responders can give simple medicine such as an Epipen, but only doctors can administer more complex medicine because of liability issues.
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.
That's what Deann and Curtis found out when Bailey was close to having an adrenal crisis in the summer of 2016 at an outdoor festival. Though the Johnsons have made many preparations in case Bailey ever has a medical issue — Bailey carries around medicine, and the Johnsons have worked with local firefighters and school officials on her medical plans — they realized Bailey's life could be in danger if she was far away from home.
"It became crystal clear to us that all of our preparedness is not enough," Deann Johnson told lawmakers Wednesday.
Former Rep. Clark Johnson and Sen. Nick Frentz, both DFL North Mankato, tried to pass a law in 2017 to solve the problem but ran into language issues with medical industry lobbyists. They reintroduced another bill last year that garnered bipartisan support, as Sen. Torrey Westrom, R-Elbow Lake, carried the bill in the Senate.
Despite support from lawmakers and medical professionals, the bill was put into the $1 billion omnibus budget bill that Gov. Mark Dayton vetoed last year due to disagreements on other issues with Republicans.
Both the DFL-controlled House and GOP-controlled Senate have promised to pass bills like the paramedic proposal on their own merits this session. Rep. Jeff Brand, DFL-St. Peter, is carrying the bill in the House and expects it to pass off the House floor within a few weeks.
"The quicker the better," Brand said. "This is the same thing that passed last year but got hung up in the budget bill."
Brand's bill would take away liability for emergency personnel who administer complex medicine to people with rare diseases. While the bill initially targeted residents like Bailey with adrenal gland issues, lawmakers worked with the Emergency Medical Services Regulatory Board and the Minnesota Ambulance Association to broaden the bill's language.
Buck McAlpin, a lobbyist with the ambulance association, told lawmakers Minnesotans could have more than 400 rare diseases that would be covered by the bill.
"We didn’t just want to focus on one rare medical condition," McAlpin said.
Though the bill has a good chance to pass this session, local lawmakers will need to do more work to ensure it's implemented properly. Regulatory board officials are required as part of the bill to make recommendations to the Legislature by next year. Brand noted some major providers such as Allina already have plans for emergency personnel to administer complex medicine, but rural providers in Greater Minnesota are still concerned about liability issues.
Despite that, the Johnsons said they're encouraged to see so much progress being made for Bailey's sake. Deann Johnson said she and her family would be willing to testify in the Senate, though they have busy schedules with Bailey and her older brother, Ethan. Bailey is already in gymnastics, and she's looking to get into basketball and cheerleading, though she said it may not work with her or her husband's work schedules.
Still, she and her family are close to crossing lobbying the Legislature off their to-do list.
"I feel like this is the year," she said.