As fate of latest health care bill sits in limbo, families ‘don’t know what to think’

Sept. 28--GREENSBORO -- Even as the effort to repeal the Affordable Care Act appears dead, some parents are anxiously awaiting Saturday's deadline to pass.

That's how long the GOP-controlled Senate has to overhaul the Affordable Care Act with a simple majority. After that, they will need help from Democrats to pass a plan, which appears highly unlikely without compromise.

"We're all paying attention," said Amelia Mattocks, a health educator in Greensboro whose 18-month-old daughter, Fern, has Down Syndrome and receives Medicaid.

Even with news on Tuesday that the Republican leadership had given up trying to pass a plan before Saturday, critics of the country's latest health care fix -- the Graham-Cassidy bill -- remain hesitant to let their guard down.

"This morning, they said they pulled the bill altogether," said Mattocks, who called the offices of North Carolina senators Thom Tillis and Richard Burr asking that they not support Graham-Cassidy. "I don't know what to think."

For one reason, the latest proposal deeply cuts Medicaid, the health insurance program for the poor and disabled. For another, it also ends the current health care law's fines on people who don't purchase policies and waters down the subsidies that help consumers afford health insurance.

U.S. Sen. Ron Wyden of Oregon, who has worked with Republicans on a range of health care issues, said cooperation is the only way to avoid creating needless problems for constituents.

"You recognize the opportunities that are in front of you," said Wyden, the top Democrat on the Senate Finance Committee, which oversees health care funding. "My hope is we can come together."

The missing ingredient seems to be leadership, outside observers say.

Neither Trump, nor House Speaker Paul Ryan nor Senate Majority Leader Mitch Connell has given clear approval for a bipartisan approach. Some governors have called for a health care reset that would involve both parties working together on a limited agenda, but their suggestion hasn't been embraced in Washington.

"As we've seen in the past, they have no interest in using the normal procedures of going through committee hearings and getting (Congressional Budget Office) scores on their legislation," said Logan Smith of Progress NC, a nonprofit public advocacy group. "It's entirely possible they will pull a surprise maneuver and hold a vote in the final hours."

So, the wait for families continues.

"I've never wanted a week to go to faster," said Martha Chaires, whose son also has Down Syndrome.

Javier, who is 2, is just learning to walk. He has heart, kidney and gastrointestinal problems that require constant monitoring.

Fern's condition requires physical therapy, occupational therapy and speech therapy, which Medicaid covers. Without it, therapy could cost upwards of $300 a month in co-pays.

"If we were paying out of pocket for that, it would be exorbitant, even with good health insurance," Mattocks said.

In North Carolina, half a million people gained new health coverage under the Obama Administration's Affordable Care Act.

Those people now find themselves in limbo.

"Until that deadline passes, until they come out and categorically state they've run out of time, I think parents and families who rely on the ACA ... will be on the edge of our seats waiting," Smith said.

The Associated Press contributed to this story.

Contact Nancy McLaughlin at 336-373-7049 and follow @nmclaughlinNR on Twitter.

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