Mt. Airy resident Amy Concilio holds her daughter Claire, who has spinal muscular atrophy (SMA). (Photo courtesy of Amy Concilio.)

by Sue Ann Rybak

Mt. Airy resident Amy Concilio’s prayers were answered when Sen. John  McCain (R. Ariz.)  cast a “no” vote to defeat his own party’s Obamacare repeal bill, which would have made massive cuts to Medicaid.

Concilio’s daughter Claire, a 2-year-old, has spinal muscular atrophy (SMA), a motor neuron disease that leads to the wasting of young muscles, impairing the ability of newborns and toddlers to walk, crawl, or even hold their heads up, and, in most severe cases, failure of muscles that enable them to breathe. There is no cure for SMA and it is a leading genetic cause of death in infants.

Madeline Bell, president and CEO of Children’s Hospital of Philadelphia (CHOP) said in a statement that severe cuts to Medicaid would have a devastating effect on Pennsylvania families and their children.

“More than 80 percent of our children receive their health insurance through Medicaid; if you’re surprised by that number, you’re not alone,” said Bell. “Medicaid is the largest children’s health program in the United States. It provides health coverage for more than 30 million children – including children with chronic illness, disabilities, and behavioral health concerns. Many of these children have no other options for health insurance.”

Concilio is the founder and executive director of Teen UpRise, a tutoring and mentoring program devoted to supporting the academic and social advancement of at-risk girls. She agreed speak to the Chestnut Hill Local about the first FDA-approved treatment for SMA and the impact cuts to Medicaid would have on her daughter.

“Do you want chocolate milk,” her mother asked.

“Yes,” Claire replied in a sing-song voice.

“Are you going to drink it,” she asked.

“Yes,” Claire replied.

“Are you lying,” her mother asked.

“Yes,” the toddler replied again without looking up.

“She drinks donor breast,” said Concilio, who stopped working in order to take care of her daughter full-time. “It’s supposed to be easier for her body to break down. I put a little chocolate in there and hope for the best.

“Claire loves to swim,” she said. “We have a blow up hot tub and pool in the back. As part of Claire’s physical therapy, she swims twice a day for an hour.”

“Between early intervention and CHOP, she has about eight appointments a week. Plus, I do six to eight hours a day of physical therapy on top of that,” she said.

Claire is currently receiving Spinraza (nusinersen), the first FDA-approved treatment for SMA in pediatric and adult patients.

Concilio said that before Claire began receiving treatment with Spinraza (nusinersen), every day her daughter “lost the ability to do something – like moving her eyebrows.”

“She didn’t even have the breath support to speak,” said Concilio, an adjunct professor at Arcadia University in Glenside. Before treatment, she could only say ba, mm or T. But within eight hours of receiving her first injection of Spinraza, she said ‘Momma’ for the first time.

“Claire couldn’t roll over until three months ago. So, we were waking up 10 to 20 times a night. Now that she is taking Spinraza, she can partially roll herself. There was a point last year, when I really had to come around to the idea that she might be completely dependent.

“But now, with physical therapy, Spinraza and a special diet, they [the researchers] think she could be walking with a walker in a year. This time last year I thought she was going to die soon.”

Concilio added as a Biogen Patient Ambassador, she is speaking on her behalf, not Biogen’s.

But she knows the fight to cut Medicaid is not over.

Recently proposed legislation to repeal and replace the Affordable Care Act (ACA), sponsored by Senators Bill Cassidy and Lindsey Graham, would significantly cut federal funding for health coverage over the next decade, and the cuts would grow dramatically in 2027, when the bill’s temporary block grant (which would replace the ACA’s Medicaid expansion and marketplace subsidies) would expire and its Medicaid per capita cap cuts would become increasingly severe.

According to the Center on Budget and Policy Priorities, “the bill would cap and cut federal Medicaid per-beneficiary-funding for tens of millions of seniors, people with disabilities, and families with children starting in 2020. Instead of the existing federal-state financial partnership, under which the federal government pays a fixed percentage of a state’s Medicaid costs, Cassidy-Graham would cap federal Medicaid funding at a set amount per beneficiary, irrespective of states’ actual costs. The cap would grow more slowly each year than the projected growth in state per-beneficiary costs. Prior CBO estimates suggest that Cassidy-Graham would thus cut the rest of Medicaid (outside the expansion) by $175 billion between 2020 and 2026, with the cuts reaching $39 billion (8 percent) by 2026, relative to current law.”

Concilio said the new legislation would put caps on all recipients.

“My daughter would likely reach her cap in 18 months. Without treatment, she would be essentially paralyzed in 3-5 years. On treatment, her physical therapists see her walking with a walker in two years.”

When the Local asked the single Mom what she wants to tell people, she replied simply, “If Claire were to lose Medicaid, we’d lose more than the hope of her ever having a normal life,” she said. “We would lose her.”

This article was updated on Sept. 22. An earlier version of this article erroneously stated that Spinraza was still in the clinical trials. It was approved by the FDA for treatment of SMA in December 2016.