NASHVILLE, Tenn. (WJHL) — Legislation named after a Hawkins County girl who recently died after battling a rare genetic disease was advanced Tuesday by a Tennessee House subcommittee.

The House Health Subcommittee approved sending House Bill 1429 to the full Health Committee.

Named “Quinnlee’s Law,” the bill by Rep. Gary Hicks (R-Rogersville) would change a section of state law regarding home medical equipment.

The bill is named after Quinnlee Shriner, a Mount Carmel 1-year-old who passed away Friday. She was diagnosed with spinal muscular atrophy with respiratory distress, or SMARD, and spent months in the hospital before doctors approved her discharge.

A cuirass ventilator that allowed Quinnlee to breathe on her own. (Photo: Scott Shriner)

Quinnlee’s return home was delayed, however, due to a state law requiring out-of-state home medical equipment providers to have an office or place of business in Tennessee in order to sell equipment in the state.

Quinnlee needed a home cuirass ventilator, but because the manufacturer had an exclusive contract with a company in New York to distribute it and did not have a license in Tennessee, it legally could not provide the device.

In order for her to get the ventilator, the state Health Facilities Commission held an emergency meeting to grant the company a license, a process that took about two weeks. The license was contingent upon the company establishing an office in Tennessee within 30 days.

“This bill simply gives Tennesseans access to care, live-saving care in the case of Quinnlee by allowing medical equipment services to provide much-needed devices in a much more efficient and expedient manner while still maintaining the integrity of the licensure process,” Hicks said during Tuesday’s subcommittee meeting.

Quinnlee was able to get the device and come home just in time for Christmas.

“On Friday, I received a phone call from Quinnlee’s father, and unfortunately, Baby Quinnlee passed away,” Hicks said. “And so, without this machine she would’ve not been able to enjoy the small amount of time she had left.”

Hicks’ bill would delete the statute requiring home medical equipment providers to have a location in Tennessee.

Rep. Darren Jernigan (D-Old Hickory) said the law was put into place because out-of-state companies would ship medical equipment to Tennesseans and then “fold up shop,” leaving patients with no one to turn to for help with their devices.

Katie Thomas with the Health Facilities Commission said the commission may be able to address that potential issue in its rulemaking under Hicks’ bill.

Two people representing the Association of Tennessee Home Oxygen and Medical Equipment Services were present at the hearing to oppose the legislation in its current form.

“As written, this bill could allow anyone to simply state their product is not available from a home medical equipment company in Tennessee, therefore exempting themselves from having a Tennessee location,” Michael Hanna, compliance officer for Home Medical Products Inc., said.

Hanna said that he too would like to see the process streamlined, but it would be difficult for the state to enforce regulations on out-of-state companies. He believes any policy change should target exclusive arrangements, like the one the ventilator manufacturer has with the New York company to distribute the device.

Home medical equipment providers, Hanna argued, should have a location in the state in order to support patients using their devices.

“You can’t drop something at the curbside or in front of the porch,” Hanna said. “A lot of people can’t get it inside and know how to use it.”

Hicks said he is willing to work with those who have concerns about his bill.

“But right now, I’d like to see this legislation move forward for those other families like the Shriner family that’s had to go through this,” Hicks said.

The bill’s Senate companion, SB 925 by Sen. Jon Lundberg (R-Bristol), has been referred to the Senate Health and Welfare Committee.