For health-care activists, Senate bill's tabling is no excuse to rest

Adrianne Gunter has Multiple Sclerosis and started sharing her story at panels and rallies to advocate for the ACA. Friday, June 30, 2017 in Barkan Park, near Gunter’s residence in West Philadelphia.

Around the time President Trump was inaugurated in January, someone handed Adrianne Gunter a flier. It listed groups that had been organizing protests around the president’s agenda, the kind that had been growing in strength and number since the election.

“One was called ‘Tuesdays with Toomey,’ ’’ Gunter, 32, recalled – the group of women who spend their lunch breaks protesting outside the Center City office of Sen. Pat Toomey (R., Pa.). “And they were saying, well, this Tuesday we’re having people talk about Medicaid and health care. And I thought, oh, I wonder if it’s too late for me to apply to speak?”

Gunter has multiple sclerosis, and for the last six months, she has told and retold the story she took to that first protest — about how, right out of college, she lost vision in her left eye and scrounged up $400 for an ophthalmologist to theorize that it might be MS. About the two years she went without insurance, treatment, or an official diagnosis. About her four rejected Medicaid applications, and the job search that became harder and harder as she lost mobility and energy and time. About the day in 2015 when she got a call: Gov. Wolf had signed Pennsylvania’s Medicaid expansion under the Affordable Care Act, and she had been approved. Over and over, she told people outside Toomey’s office and on teleconferences and on panels that she feared proposed cuts to Medicaid would cost her the coverage she relies on for treatment.

For her, like many of the protesters galvanized after the presidential election, the first half of 2017 has been something of a crash course in activism and health-care policy – learning to mobilize quickly and call lawmakers daily over bills that, some days, seem to change by the hour. There was the secretive drafting, failure, and subsequent passage of the House health-care bill. There was the secretive drafting, failure, and subsequent fevered speculation over the potential future passage of the Senate health-care bill.

And there was the ensuing uncertainty that, for people like Gunter, is a health concern in and of itself.

“I try not to get overwhelmed, because stress makes the symptoms worse,” she said. “I try to stay calm.”

Now, with the Senate bill tabled until after the congressional recess, she and other activists who have protested the bills for months are taking a deep breath – but not that deep.

“I think everyone took a minute to breathe a little sigh of relief and celebrate that this got pushed off, but that was short lived. It was a couple minutes before everyone got back to work,” said Antoinette Kraus, the director of the health care advocacy group Pennsylvania Health Access Network. “This is still happening. And folks are pretty fired up.”

Toomey, whose office at Second and Chestnut Streets still draws weekly protests, has argued that the concerns of Gunter and activists like her are unfounded; under the Senate bill that he helped draft, he wrote in the Inquirer last week, those who qualified for Medicaid under the expansion would still be eligible.

But the bill would put spending caps on Medicaid. And it will eventually require states to pay more of the cost for the program’s expansion, to curb what Toomey called “uncontrolled, unsustainable spending growth.” That, healthcare advocates fear, will lead to cash-strapped states like Pennsylvania cutting coverage. (Senators are now reportedly weighing amendments to the bill.)

For longtime activists, the fight over the health-care bill is a heightened version of one they’ve been waging for years. ADAPT, the national activist group for people with disabilities, sent dozens of people, some in wheelchairs, to the Capitol last week to protest the proposed changes to Medicaid — which they say could affect coverage for people with disabilities who rely on Medicaid-funded care to live at home. More than 40 were arrested outside Senate Majority Leader Mitch McConnell’s office, including several protesters from Philadelphia.

“A lot of people got really complacent in the Obama era – I’m not saying that I didn’t have problems with Obama,” said Liam Dougherty, a volunteer with ADAPT who uses a wheelchair because of a neuromuscular disorder. He was arrested at the Capitol this year, protesting the House bill, which he said would hurt friends who use Medicaid. “But the fights I did have to fight – they weren’t superficial, but they weren’t life and death.”

Others say they’ve seen a new fervor among the activist crowd. “I’m gonna fight this, and if we lose, I will continue to fight it until we get what we have back,” said Cassie James Holdsworth, 61, another ADAPT activist who has spina bifida, and who was arrested at the Capitol in her wheelchair last week. Holdsworth gets coverage under Medicare; her daughter, who has a heart defect, has Medicaid.

For Gunter, the Senate bill’s tabling wasn’t cause for much celebration. The House bill, after all, “came back stronger than ever,” she said. So, though it takes her days to recover after leaving the house, Gunter has continued to speak.

“In school, we learned how to pitch our stories,” Gunter said – she has a degree in film and television writing from the University of the Arts – “and it’s very much like pitching a story. It’s my story.”

On days when even getting out of bed is difficult, “I tell myself, ‘You made a promise. You have to show up. You can do this. Sit up. Roll your legs out of bed. Stand up. Grab your cane…’ ” she said. “This is not a time to let down our guard.”

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