WASHINGTON (CN) – By the time Paul Gibbs was 5 years old, he had already gone through nine surgeries for a condition he was born with that damages his kidneys through an inability to expel waste. His kidneys reached the end stage of failure by 2008 and Gibbs was forced to seek help for his $79,000 transplant surgery, asking members of his church and family friends for donations.
A local theater group in Utah raised $10,000 for his medical bills, and a combination of Medicare and Medicaid funds eventually allowed him to have the operation.
Now, Gibbs’ 5-month-old son Peter is showing signs of declined kidney function and underwent his first surgery in June.
During a House Oversight Committee hearing Wednesday on efforts by the Trump administration to repeal the Affordable Care Act, also called Obamacare, Gibbs said his son could be denied coverage for the rest of his life if protections for pre-existing conditions were stripped away.
“Because of the ACA, we know that he cannot be denied insurance coverage for it,” Gibbs testified. “But if the ACA is repealed and we lose those protections, Peter will be branded for life with a pre-existing condition that at best would make insurance coverage prohibitively expensive, and at worst will lead to it being denied entirely.”
President Donald Trump has wanted to do away with the ACA since assuming office, saying numerous times during his 2016 campaign he would demand a repeal of the law on his first day in office. His administration has tried to repeal the law dozens of times to no avail.
The most notable of these attempts was championed by former House Speaker Paul Ryan and dubbed the Health Care Freedom Act, which proposed eliminating the ACA’s individual markets without a compressive replacement.
The bill would have pushed nearly 16 million Americans into the uninsured category. Republican Senator Lindsay Graham of South Carolina said at the time, “The skinny bill as policy is a disaster.”
In March, the Justice Department said it would no longer defend the ACA in a lawsuit filed by Texas and other Republican-led states to kill former President Barack Obama’s signature health care law.
The states argue the entire law should fall because of the 2017 Tax Cuts and Jobs Act’s repeal of an individual mandate penalty, which was originally upheld by the Supreme Court in 2012 under Congress’ ability to tax and spend.
On Wednesday, lawmakers heard from Gibbs and other patients about their inaccessibility to medical coverage if the ACA was successfully repealed.
Peter Morley, a New York resident diagnosed with lupus in 2013, among a slew of other medical conditions, said he could die without insurance coverage.
“I take 25 medications daily, 38 yearly, and receive 12 lifesaving infusions yearly for my lupus,” he testified. “Without access to insurance, I could not afford to pay for these medications and would lose access to my team of doctors.”
Frederick Isasi, executive director of Families U.S.A, an organization that works to bring health care to local communities, said the group’s mission is to make everyone’s lives better. If the ACA is repealed, 20 million people would lose coverage, he said.
Isasi’s written testimony included a detailed analysis which states the proportion of uninsured individuals in rural areas fell by nearly a third, from 21.6% to 14.4%, after Obamacare was passed. Through Medicaid expansion, part of the ACA, 1.9 million Americans gained coverage.
But David Balat, director of the Right on Healthcare Initiative, said an issue with the ACA is that it drives up prices of insurance premiums.
“The high cost of care is the single biggest reason why health care has become less accessible,” Balat testified. “The high cost of care is what the American people care about.”
Congressman Elijah Cummings, a Maryland Democrat who chairs the committee, said the vote to pass the ACA was the most important of his career. He said it ended a type of legalized discrimination against people with pre-existing conditions.
“Sometime we have to get around to making sure that all people are taken care of,” Cummings said. “And it can be an effective and efficient system and one that will work for all Americans.”
Other witnesses at Wednesday’s hearing included Abbe Gluck, a professor at Yale Law School, and patients Casey Dye and Stephanie Burton.