Salt Lake City, Utah- (ABC4 Utah) – A Utah man was one of only ten people who had a rare opportunity to share their health care concerns with President Donald Trump.
Box Elder County Commissioner Stan Summers says the Affordable Care Act has failed his family. He took that message from Brigham City to Washington D.C.
Trying to sell his health care bill, President Trump turned to Americans who say they are struggling under the current system.
Summers was one of the few invited to participate in the listening session.
“I was just amazed at the honesty, and humbleness of being able to walk into the Oval Office and have people care, they hung on every word,” said Summers.
Summers says his 25 year old son suffers from a rare condition.
“It’s called IgG4 systemic sclerosing disease, and now they think that it’s kind of a mass cell.”
He says under the ACA his son was denied the care he needs.
He says he was cut off from hospice care, and couldn’t get access to drugs that could potentially treat the condition.
“I don’t know if he’s going to last ten minutes, ten days, ten years. Nobody knows, nobody can tell us what his mortality is.”
That’s why he jumped at the opportunity to share his thoughts on how the system can be improved.
Summers would like to keep protections for pre-existing conditions and allowing kids to stay on a parents plan until 26.
He also suggested access to experimental drugs and a one time deductible for the same condition, instead of starting over every year.
He says that has been very costly for his family.
“There’s a lot of people out there just like us. I think we all need to have some sort of a safety net.”
Advocates for the ACA say the safety net is exactly what’s at risk. Jason Stevenson, with Utah Health Policy Project says the republican replacement plan will squeeze out Utahns.
“Lower income Utahns, especially those with larger families who have children covered by Medicaid or CHIP, they would see their tax credits cut and pulled back, as well as older families, people in their 50’s and 60’s,” said Stevenson.
The plan is facing resistance, even from some congressional republicans. One of them is Utah Senator Mike Lee. He says it fails to deliver on the promise to repeal and replace the ACA.