MANASSAS, Va. — The U.S. House of Representatives voted Thursday night to pass a bill that could have a major impact on your health care coverage.
For a mom in Manasass, it's personal. She's been pushing lawmakers to pass the Strengthening Health Care and Lowering Prescription Drug Costs Act. As the bill heads to the Senate, she says if it doesn't pass, her child could die.
Jack Nelson looks like a typical seven-year-old boy who loves to watch his favorite movies. But he has a life threatening disease and must spend two to six hours a day in a vibrating vest. The vibrations push medication deep into his lungs.
"Jack has Cystic Fibrosis. It's fatal. It's progressive. There is no cure," said Jack's mom Tasha Nelson, who has three children and is pregnant with her fourth.
She opened her refrigerator and pulled out a small, white vial.
"This vial right here is $200 a day. This is the medication that helps him breathe the most. It thins his mucous so that he can take a breath," said Nelson.
Opening a cabinet and pointing to rows of pill bottles she said, "This is what allows him to eat. He takes one of these every time he has a meal. This is $1200 a month. As he ages, it'll get more expensive because he'll need more and more per meal," said Nelson.
And that machine with the vibration vest costs $22,000.
Every year, Jack's total medicine cost run $108,000.
The family pays $34,000 dollars of that is in out of pocket expenses and deductibles. If they didn't have insurance, they'd be medically bankrupt.
"We're not a sponge on the system," Nelson said. "We don't use Medicaid, we have a federal insurance plan."
But Nelson said she's terrified that the Trump Administration attempts to dismantle Affordable Care Act, will have devastating, even deadly impacts for families like hers.
"When the ACA was signed into law, there was four years from the time it became law to the time that we were actually covered," she explained. "Four years without coverage will kill a lot of us. Because it takes years for these things to come into after and work. And a gap in coverage for kids like mine, is literally deadly."
She's part of the parent organization Little Lobbyists, and has been on Capital Hill pushing lawmakers to sign omnibus health care bill which strengthens the Affordable Care Act and puts protections in place for people with life-threatening diseases like Jack. Virginia Congresswoman Jennifer Wexton is a sponsor.
"This is something that affects all of our constituents and we all have an interest and an obligation to make sure we take care of these kids and people with pre-existing conditions," Wexton said.
Before the ACA, insurance companies could put lifetime caps on coverage.
Tasha Nelson says if this legislation isn't passed, lifetime caps will likely come back putting Jacks' life is in jeopardy.
"So right now, with the ACA intact, we're safe. It doesn't matter how sick Jack gets, the insurance company continues to receive payments from me," she explained. "They can't say, 'your too expensive, your life is worthless, we can't cover you.'"
The House of Representatives passed the bill Thursday night by a vote of Its fate now rests with the Senate where it is less certain to pass.