It’s not every day that your family is proud of you for getting arrested.
Sara Atkins said goodnight to her kids before leaving Wynnewood for Washington, D.C., telling them how she is fighting for their health.
“Have fun getting arrested,” one told her.
More than 400 people from across the country flooded the capital on July 19 for a demonstration organized by Housing Works to share personal stories with senators of how the proposed repeal of the Affordable Care Act will impact their lives.
At press time, with the two bills in play — the Better Care Reconciliation Act (BCRA), which would repeal and replace, and the new Obamacare Repeal Reconciliation Act (ORRA), which would repeal ACA funding — the Congressional Budget Office estimated 22 million fewer people will have health insurance in 2026 with BCRA, and 32 million with ORRA.
More than 80 Pennsylvanians knocked on the door of the office of Sen. Pat Toomey (R-Pa.), including Atkins. Sixteen were later arrested — also including Atkins.
For her, voicing her children’s stories was well worth the arrests. (She was also arrested the week before.)
“We begged Sen. Toomey to listen to us,” she said. “This bill is going to kill our family and friends.”
The group chanted “shame, shame, shame,” Atkins recalled, which reverberated throughout the marbled halls. She was the first to share a firsthand testimony of her 11-year-old daughter, Freida.
Freida has an unknown autoimmune disorder. She’s been diagnosed with idiopathic anaphylaxis and eosinophilic esophagitis — basically, her immune system is failing her, and worsening each year.
“Just to keep her alive every day, she’s on three different antihistamines that are prescriptions, and not ones that you normally get prescribed — the heavy hitters,” Atkins said. Freida is also on medications for Tourette syndrome, obsessive-compulsive disorder and attention deficit hyperactivity disorder.
She goes to Johns Hopkins every other week for Xolair treatments — stabilizing her immune system — which can reach roughly $10,000 per shot without insurance, Atkins said.
Their insurance initially didn’t approve it, so she contacted Toomey’s office as well as the office of Sen. Bob Casey (D-Pa.). Toomey didn’t reply. Casey’s team called the Atkins’ insurance company and asked them to read Freida’s file instead of reject her based on her age.
“They took it seriously,” Atkins said, adding that she has thanked Casey numerous times in person. “They care. They ask how Freida’s doing, how other people are doing who have shared their stories.”
Freida’s treatments are about $2,000 a month. Without insurance, Atkins estimated Freida’s expenses would reach half a million in a year.
“With lifetime caps, with annual caps coming back to employer insurance, she will hit that pretty quickly, and then what are we supposed to do?” she questioned. “We can’t afford the treatments, the medicine; all the care that keeps her alive would be out of our ability.
“I’m supposed to tell my 11-year-old, ‘I’m sorry, there’s a way to keep you alive but we can’t afford it’?” she continued. “All we know is if this bill or just the straight-up repeal happens, she will die.”
The Atkins’ medical expenses don’t end with Freida. They have four other children ranging from 5 to 14, all of whom have Tourette syndrome and OCD; some also have ADHD.
Every time she visits Toomey’s office — almost a couple dozen times now — she asks, “Sen. Toomey, are you ready to sign [my kids’] death certificates?”
Capitol police showed up promptly on July 19, arresting 155 total.
Rosalind Holtzman was inspired by Atkins — who she referred to as a “hero with a snood and attitude” and a “fierce momma bear” — to protest at Toomey’s office. She went to D.C. on July 11, something she had never done before.
“Even though personally my own life is not on the line, other people’s lives are,” she explained. “If people are brave enough to put their lives and their bodies on the line, the least I can do is stand with them.”
Holtzman was also arrested that day, one of seven from Philadelphia, of which she said her elderly parents were extremely proud.
Holtzman was a pediatric nurse, a childbirth educator and a religious school teacher, and her husband is an emergency physician, so she understands the ins and outs of health care.
“I take Judaism seriously. I believe I need to live by the values that I claim I cherish and care about,” she said. She reiterated a quote from Hillel: “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?
“I have responsibilities to speak up for myself, but just as much, if not more, to speak up for other people,” added Holtzman.
Even at 11, Freida understands the severity of her own medical situation.
“When her throat is closing and she’s in the middle of one of these random anaphylaxis attacks, she knows what dying means,” Atkins said. “She has stopped breathing more than once. Her throat has completely closed more than once. … She knows her life is fragile.”
Atkins, whose family is Lubavitch, hopes the Orthodox community — which voted for President Trump by larger margins than the rest of the Jewish community — sees that they, too “will be hurt by this [bill], and we need to come together and fight.”
“I don’t think enough people understand the bills to understand how they will be hurt by it,” Atkins said. “I don’t care what anybody thinks. I have a kid that will die.
“I will fight for all five of [my kids] until my last breath.”
Contact: rkurland@jewishexponent.com; 215-832-0737
