1 of 7
Scott G Winterton, Deseret News
Kathryn Jones Porter, her daughter Maekennah, husband Zachary and Stan Clawson unites with other Utahns to march and rally in downtown Salt Lake City in support of protecting access to affordable and quality health care Saturday, June 10, 2017.

SALT LAKE CITY — For Mark Hansen, the uncertainty surrounding the national health care debate is very concerning.

His 17-year-old son, Jacob, has cystic fibrosis and cerebral palsy, two conditions that have an enormous effect on the young teenager — and the rest of the family.

Through Medicaid and the Affordable Care Act, the Eagle Mountain residents have been able to afford the laundry list of costly medications Jacob regularly requires, along with a $50,000, high-tech wheelchair he uses to get around.

However, proposed legislation under consideration in Washington, D.C., could jeopardize that affordability and potentially put the Hansens is dire straits.

"If it weren't for (Medicaid), his medical bills would be astronomical," Mark Hansen said.

"I have a single medicine that's ($280,000) a year," Jacob added. "That's like buying a house every year. And that's just one of my medicines."

Jacob has endured numerous surgeries and procedures over his relatively short lifetime, his father of said, and none of them would have been possible without affordable health care coverage.

"It's a major fear for me as the dad to try and figure out how to keep my son alive," Mark Hansen said. "If we were to lose this Medicaid, our family would be homeless within a couple of months … and Jacob would probably be sick and unable to go to the hospital to get treatment."

The Hansens were among the scores of people who participated in a march and rally Saturday in downtown Salt Lake City in support of protecting access to affordable and quality health care. Organizers asked participants to call on Utah Sens. Orrin Hatch and Mike Lee, to reject proposals that would cut or cap Medicaid funding and repeal the Affordable Care Act, also called Obamacare.

The American Health Care Act, a controversial measure passed by Republicans in the U.S. House of Representatives, is currently under review in the U.S. Senate, with a vote possible in the coming weeks. Some critics worry the proposal could make worse a situation that they believe threatens to make affordable health care access less attainable.

"A lot of the people that are uninsured right now end up in the emergency room, and who pays for that? The taxpayers," said rally co-organizer Psarah Johnson, 40, who was diagnosed at 18 months with juvenile rheumatoid arthritis. "It's the most expensive kind of health care there is right now."

Co-organizer Stacy Stanford, 32, uses a wheelchair part time due to lasting effects of neurological damage suffered during a car crash six years ago. She said lack of health insurance coverage for six years has hindered her ability to obtain necessary medical treatment to properly diagnose her condition.

"I have some mobility impairment, difficulty walking, wide-spread weakness (and) pain," Stanford explained. "It's frustrating as a sick person (and) disabled person, because illness and disability doesn't affect one party. Health care is not a partisan issue, and yet it's become one somehow."

Local health care advocates are working to fight against the notion of limited access to coverage, she said.

"Health care is essential to everyone all the time," Stanford said.

Limited coverage will force taxpayers to foot the bill for millions of people who won't be able to afford adequate coverage if Obamacare is repealed, she said. Locally, Stanford called on Utah lawmakers to support policies that provide coverage for those who need it most.

"On a state level, if (the American Health Care Act) does pass federally, we need to be mindful to resist some of those harmful reforms," she said. "How insurance is designed to work is that younger, healthier people will help subsidize those costs and keep them down across the board."

Stanford warned those who don't believe health insurance is something they need because they are young and healthy that they should be mindful of the potentially dangerous unknown.

"You might need that care tomorrow," she said. "I was pretty healthy until I wasn't. It takes one diagnosis, one accident or one infection for you to join the disabled class … to become one of those sick people that needs the expensive coverage."

Rep. Ray Ward, R-Bountiful, a family physician, was among the speakers during the rally on the plaza of the Wallace Bennett Federal Building. Ward said two major priorities for him regarding whatever law is passed by Congress is to protect those with pre-existing conditions and preserving Medicaid.

"We need some kind of system where you pay your fair share, but people are afraid they're going to be cut off from their insurance because of having had a pre-existing condition. That's not right," he said. "And I hope there aren't big cuts to Medicaid. (It) provides important services that people need. It needs reform like the whole rest of the system, but making big cuts to Medicaid and cutting off people from their insurance isn't going to help."

While the debate is ongoing, Mark Hansen said he is coming to a place where he is supportive of the notion of universal health care in the U.S.

"I like the whole concept of the free market, but there are certain things that should be provided," he said. "Health care is one of them. Keeping my son alive and keeping (other) kids alive (is) something that we should all be taking care of."