Jean-Marie LawrenceJean-Marie Lawrence says she doesn't want anyone's pity, she just wants to be able work hard and live the American dream.
On Saturday, the 30-year-old emergency management planner - who has lived most of her life with muscular dystrophy, a degenerative muscle disease - shared her story and her worries during a health care town hall conducted by the Alliance for Healthcare Security at the Chattanooga Public Library.
Organizers said they invited U.S. Sens. Lamar Alexander and Bob Corker, who did not attend.
Lawrence and three other panelists spoke with more than 60 people who came to raise concerns over Republicans' intentions to repeal and replace the Affordable Care Act.
"I spend every day that this debate continues in fear of what the future holds for me and millions of my brothers and sisters with disabilities," Lawrence said, citing proposed cuts to Medicaid funding.
She said Medicaid gives her the means to hold down a full-time job and contribute to society. Without it, she loses home health service providers who make sure she gets up, help her in the bathroom, cook her meals and ensure she makes it to work. No Medicaid means she couldn't afford the complex powered wheelchair - valued at $60,000 - she uses.
"Unfortunately, all that I've achieved will be worthless if this health care bill is passed," she said.
In the end, it would mean she would have little choice but to give up working and spend the rest of her days in a nursing home, which is actually more expensive than her home health services, Lawrence said.
Micah Johnson, Corker's communications director, said in an email the senator was on vacation this weekend after he "spent much of the 4th of July holiday in Tennessee, interacting with constituents and attending several events."
"With the federal government currently $20 trillion in debt and Medicaid spending unsustainable on its current trajectory, the senator strongly supports the idea of giving governors the flexibility they have been requesting for decades while over time creating a more appropriate cost sharing partnership between states and the federal government," Johnson said.
Corker continues to work with Senate leadership on the matter and will take a position on the legislation when its text has been finalized, Johnson said.
Panelist Dr. Danielle Mitchell, a sports medicine physician, said the Republican mantra of giving more authority to the states was a way of dropping the medical financial burden on the states, local communities and families.
Mitchell is running as a Democrat for Tennessee's 3rd Congressional District seat against incumbent U.S. Rep. Chuck Fleischmann, R-Tenn.
Panelist Ginger Birnbaum, a mother of a 5-year-old son born with cystic fibrosis, worries about the possible weakening of rules preventing insurance companies from denying coverage for pre-existing conditions.
On a "healthy day," her son, King, takes 50 pills and spends 10 hours on a feeding tube, Birnbaum said.
While the family's insurance costs come to $40,000 a year, even with the Affordable Care Act, their medical costs would soar to $200,000 if that coverage goes away, she said. Annual or lifetime insurance payout caps are big worries for them.
"We're not the family who's going to tell you the Affordable Care Act is affordable at all," Birnbaum said. "You can imagine we're already under some financial stress, but there's absolutely no way that we would ever succumb to the horrors of this newly proposed bill because we are then looking at medical bankruptcy."
While the Republican legislation does not remove pre-existing protections, it does not force states to require insurance companies to provide benefits covering treatment and medicine for people with pre- existing conditions.
Alexander's office could not be reached for comment.
Contact staff writer Paul Leach at 423-757-6481 or pleach@timesfreepress.com. Follow him on Twitter @pleach_tfp.