WILLINGBORO, NEW JERSEY — When Laurel Smith first looked at the Obamacare replacement bill passed by the House of Representatives last week, she was shocked by the list of pre-existing conditions that states would be allowed to use to charge people more for coverage.
“I was like, oh my god. That’s my whole family,” the Medford, New Jersey resident said. “Even my dog has thyroid issues.”
Smith has asthma and survived thyroid cancer, her husband has diabetes, and her 26-year-old son Jamie has Mitochondrial disease, and has required constant medical attention, including a feeding tube, since he was diagnosed at eight years old. The medication he takes for his immune system is roughly $10,000 a dose, she said.
“We’re all pre-exisiting conditions, and I can’t imagine them putting us in a pool and having them rate me based on my health care,” Smith told ThinkProgress.
Jamie, who said he wasn’t expected to live past a few years old, claimed that if the bill were to become law, Trump and GOP lawmakers would be committing “genocide.”
Laurel and Jamie Smith spoke to ThinkProgress outside the John F. Kennedy Center in Willingboro, New Jersey, where they planned to protest Rep. Tom MacArthur (R-NJ), who drafted the amendment that led to the passage of the Affordable Health Care Act.
“When we went to his town hall before, and I was in tears, he promised us that he would not vote for anything that was going to hurt his constituents,” Smith said. “This is deadly for his constituents.”
Hundreds of people — most of whom said they had never before attended a town hall — were already lined up outside the venue Wednesday afternoon, two hours before MacArthur was scheduled to arrive. Constituents wore name tags with their Zip codes and held red and green flags, which they planned to wave to indicate whether they agreed or disagreed with the congressman.
Margaret Davis, another of MacArthur’s constituents, told ThinkProgress very little would prompt her to pull out the green one. “Maybe if he says hello,” she said. Standing next to her, Nancy McGuire added: “Or if he says ‘I’ll resign.’”
Dozens more people — both third district constituents and others who traveled farther — protested in front of the community center, holding signs claiming the ACHA will kill Americans and waving cardboard tombstones with their own names.
It was a new level of notoriety for MacArthur, a moderate Republican from a swing district. Before he brokered a deal with the House’s far-right Freedom Caucus to get the Republican replacement for Obamacare over the finish lane, his tenure in the House was fairly unobtrusive. But since the bill narrowly passed the lower chamber of Congress last Thursday with just 217 votes, MacArthur has become one of the faces of Trumpcare — and his constituents are wondering what happened.
“When Tom ran for office this last go round, he presented himself as somebody who would work across party lines,” Kevin Kapuscinski, who voted for MacArthur, told ThinkProgress. “Then, came Tom and his amendment, just to pander to the Freedom Caucus — well that pissed me off. I’m sorry, but you have to call it like it is. My moderate representative turned far-right on me.”
Kapuscinski, like everyone ThinkProgress spoke with, is no fan of MacArthur’s amendment. “The old saying is, the devil’s in the details. There’s too many outs in it.”
And that’s precisely what the amendment does: it gives states the option to opt out of two key provisions of Obamacare, namely, the mandates that insurers cover basic health services like hospitalizations, prescriptions, and maternity care, and the prohibition against insurers taking pre-existing conditions into account when they set rates.
MacArthur and other Republicans insist that his amendment doesn’t repeal Obamacare’s protections for pre-existing conditions, because it still includes language prohibiting insurers from denying someone coverage because of their health status.
But, in practice, it opens the door for the sick to be priced out of functional access. In a state that chooses to get rid of the protections, those who have a gap in coverage for any reason, can be asked by insurers to list all of their previous ailments — and then charged far more for their coverage because of them.
“My wife’s got a pre-existing condition,” Kapuscinski said, and at risk of losing her job because of her current health status. If that happens, he said, “we might be in a world of hurt… it’s going to directly affect us.”
States that roll back the protections would be required to establish safety nets, likely in the form of “high-risk pools” for those who have costly ailments. In the past, however, such pools were often overburdened and underfunded, and offered skimpy coverage, exorbitant costs, and long waiting lists.
“There are a lot of things he doesn’t understand, like the need for a much more significant high-risk pool,” said Janet Davidson, a constituent who previously worked in health care administration. “High-risk pools don’t work, in general, particularly well.” She also called the plan to reduce Medicaid “outrageous.”
MacArthur’s constituents weren’t the only ones outraged by his amendment — and are far from the only ones who would be affected. Bob Finkelstein, who isn’t from MacArthur’s district, told ThinkProgress he came in from neighboring Philadelphia because he too would be directly affected by the legislation if it passes.
“I have multiple sclerosis, and I take a medication that costs over $80,000 per year,” he said. “When the Affordable Care Act passed, for the first time since I was diagnosed in 2003, I really felt it was going to be affordable. It was the first time I wasn’t afraid.”
Before Obamacare, Finkelstein said he was paying 40 percent of the cost of his medication out of pocket. If Trumpcare passes, and the pre-existing protections are revoked, he estimates he’ll be facing a crippling $50,000 per year in medical costs.
“If I don’t take my medication, I could become paralyzed, I could die an early death, so what he’s doing is actually playing with people’s lives,” Finkelstein said.
“And anything that happens to someone like me, or anyone else who can’t afford health care in this country, it is going to be his fault and the fault of every single Republican who voted for that bill. People are going to die.”