SALT LAKE CITY — Without the Affordable Care Act, Kammie Garr may be forced to sign her son over to the state so he can get the medical care he desperately needs.
"We struggle," the Clinton mother of three said Wednesday. "He's better with health care, but many of the therapies that would work for him are out of reach financially for us."
On top of that, 9-year-old Dominick's health problems would be considered pre-existing conditions and would not be covered without protections afforded by health care reform, which Congress is threatening to do away with.
Many Americans don't understand what may be at stake if Congress repeals the law known as Obamacare, said Whitney Duhaime, vice president at Denials Management, a Millcreek health care claims advocacy firm.
Duhaime said even people with plans secured through an employer will lose certain provisions such as coverage of 10 essential benefits, including treatment for mental health issues, coverage for pre-existing conditions and coverage of adult children to the age of 26 on a parent's plan.
The 2010 passage of the Affordable Care Act also removed annual and lifetime maximums and copays for preventive care.
Health care reform made it possible for more than 188,900 Utahns and nearly 9 million Americans to gain access to affordable, quality health care, yet prior to President Donald Trump taking office this year, Congress made its intent to change the law and in December asked state leadership for feedback on the matter.
And while Gov. Gary Herbert submitted a letter saying certain things about the Affordable Care Act were working for Utahns and others weren't, the Alliance for a Better Utah was discouraged that Utahns were not asked to participate.
The group launched an online survey, and in just a couple weeks, more than 1,700 Utahns responded.
More than 92 percent of survey respondents said they believe the Affordable Care Act should not be repealed, and instead be fixed.
"Utahns generally want and need the protections afforded by a variety of benefits found in the Affordable Care Act," a report of survey results from the Alliance for a Better Utah states. "While there are problems with the realities of insurance under the Affordable Care Act, such as high premiums, decisions made by politicians should reflect the additional reality that most people benefit from at least one or more provisions found within the act."
Josh Kanter, founder of the Alliance for a Better Utah, said repealing the law would be reckless and lead to "immediate and significant consequences" for many Utahns.
Terry Mitchell, a self-employed real estate broker, estimates she'd be dead — or at best in a wheelchair — without the Affordable Care Act, which made it possible for her to afford care for her various chronic ailments.
"The financial and emotional burden imposed on me and my family through all this is unbelievable and hard to put into words," she said.
Mitchell, 52, participates in a marketplace plan and says she budgets the rest of her life around it.
"People shouldn't have to choose between keeping their house or buying the medications they need to stay alive," she said, adding that the stress of deciding between it all only compounds issues.
"My life has changed dramatically," Mitchell said. "I do things I couldn't do before, including the ability to hold my baby granddaughter, that many people just take for granted."
The alliance delivered the survey results, including a selection of personal stories, to Gov. Gary Herbert and top legislative leadership Wednesday to let them know the impact repealing the law would have on Utahns, including many whose "lives hang in the balance," Kanter said.
"It would be hard to take a step back," Garr said.
She's lived the reality of repeated denials from insurance companies and the inability to diagnose and properly treat her son's problems.
"I want to take care of him. He's my son," Garr said. "No parent should have to consider giving up that responsibility, and I'm doing everything I can to avoid that."