Bill named for Arvada girl signed into law

Law makes it easier for doctors to stay with patients with rare diseases

Staff report
Posted 4/17/18

Physicians often sign contract agreements to not actively tries to take patients with them, if they leave a group practice. Those that do, may be legally forced to pay monetary damages. But a bill …

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Bill named for Arvada girl signed into law

Law makes it easier for doctors to stay with patients with rare diseases

Posted

Physicians often sign contract agreements to not actively tries to take patients with them, if they leave a group practice. Those that do, may be legally forced to pay monetary damages.

But a bill signed into law April 2 makes an exception in the case of patients with a rare disorder.

SB18-082 known as “Gracie’s Bill” is sponsored by Sen. Rachel Zenzinger, D-Arvada, and Rep. Chris Kennedy, D-Lakewood and was signed into law by Gov. John Hickenlooper.

The law was inspired by Arvada resident Grace Hoyt, 7 with a rare disease, posterior column ataxia with retinitis pigmentosa. This means that she has poor balance, she is legally blind, and she does not feel pain.

“Not feeling pain has been the hardest part of her condition to manage,’ said Susan Hoyt, Grace’s mother, in testimony supporting the bill. “Gracie has had many, many infections in her short life. She has been hospitalized about 15 times, always for some type of infection. Some of these infections were very serious, even requiring amputations of some of her fingertips.”

Hoyt continued to explain that her family has relied on infectious disease doctors to manage her daughter’s infections and find medications to prescribe that she is not resistant to.

“We have had mixed luck with infectious disease, but in 2013 we found Dr. Wendi Drummond at Rocky Mountain Hospital for Children.” Hoyt said. “Dr. Drummond was a Godsend. She understood the complexity of Gracie’s care. She listened to my concerns and answered my questions honestly, never getting offended if I questioned a particular treatment.”

But in January 2015, Drummond left Rocky Mountain and the terms of her non-compete agreement prevented her from talking to the Hoyts or having any influence on Gracie’s care.

“We still have not found an infectious disease specialist who understands Gracie like Dr. Drummond did,” Hoyt said. “Her new infectious disease doctors try to treat her like a 7-year-old with a normal immune system, not comprehending the seriousness of her condition. If Dr. Drummond could have continued to help with her care, I believe the doctors would have treated Gracie more quickly and she would not have spent as much time in the hospital.”

Hoyt encouraged members of congress to consider her daughter and other children and adults with rare diseases when making their votes.

“The idea that we would withhold critical healthcare from a child to protect a business made no sense to me,” Zenzinger said. “How do you justify that to the sick child? You can’t. I’m proud that my colleagues in the legislature saw the same logic and acted decisively to fix the problem.”

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