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ICYMI: Senator Hassan Visits Child with Spinal Muscular Atrophy, Underscores How Harmful Graham-Cassidy Trumpcare Bill Would Be

Bodhi’s Mother: Under Trumpcare, "If we sold our house, we could probably keep him alive for another year"


Click here for video of Senator Hassan’s visit with the Bhattarai family

CONCORD – Yesterday, Senator Maggie Hassan visited with Bodhi Bhattarai of Concord, who experiences spinal muscular atrophy, and spoke with Bodhi’s parents about how devastating the Graham-Cassidy Trumpcare bill would be for children like Bodhi. Bodhi's mother, Deodonne Bhattarai, told WMUR that under Trumpcare, "If we sold our house, we could probably keep him alive for another year."

See below for highlights of the coverage:

WMUR: NH families worry they could lose insurance coverage under health care bill

By Adam Sexton

CONCORD, N.H. — Wearing a mask and a superhero cape, 3-year-old Bodhi Bhattari seems almost unstoppable as he steers his wheelchair around his Concord home. But his parents are worried about his future as Republicans in Congress work to repeal the Affordable Care Act.

A bill filed by U.S. Sens. Lindsey Graham and Bill Cassidy would redistribute a lot of power and tax dollars to the states, but families like the Bhattaris are concerned that ultimately, they will lose coverage or be unable to pay for it.

"The thing that scares me the most is caps and preexisting conditions," said Ranjan Bhattari, Bodhi's father. "Sure, I can get health insurance, but I might not be able to afford it."

Bhodi has spinal muscular atrophy, a rare neuromuscular disorder characterized by muscle weakness and difficulty standing or walking. It can be fatal.

It's unclear exactly what would happen if the Graham-Cassidy bill is passed and signed into law. The nonpartisan Congressional Budget Office said it would not be able to give a full accounting of the bill's affects before a planned vote next week.

The Bhattari family sat down with U.S. Sen. Magge Hassan, D-N.H., Thursday afternoon to discuss the bill. They said they worried that they quickly would be unable to afford insurance for their son if it passes.

"If we sold our house, we could probably keep him alive for another year," said Deodonne Bhattari, Bodhi's mother.

… Hassan said she supports reforming Obamacare, but not like this.

"That's why it's so important that we get back to the bipartisan progress we were making in the Senate and we stop Graham-Cassidy," she said.

Bodhi's parents said the stakes couldn't be higher.

"It's really, literally, life or death for him," Ranjan Bhattari said.

Concord Monitor: Hassan meets with Concord boy as part of push to save Obamacare

By Paul Steinhauser

A Concord 3-year-old who suffers from a rare neuromuscular disease is once again in the spotlight in the fierce political battle over repealing Obamacare.

Democratic Sen. Maggie Hassan visited Thursday with Bodhi Bhattarai and his parents, just days before a crucial Senate vote over a bill introduced by Republican Sens. Lindsey Graham of South Carolina and Bill Cassidy of Louisiana.

… “The latest Graham-Cassidy Trumpcare bill threatens the health and well-being of millions of Granite Staters and Americans like Bodhi,” Hassan said.

“We can’t let the political pressure to ram the Graham-Cassidy bill through mask the fact that this is about people and that Graham-Cassidy would really hurt so many people in New Hampshire and across the country,” added New Hampshire’s former governor and freshman senator.

Bodhi experiences spinal muscular atrophy, a rare and often deadly disorder that impedes mobility. When Bodhi was around a year old, he was diagnosed with the incurable disease that affects just one in 10,000 infants.

Bodhi depends on hundreds of thousands of dollars of lifesaving drugs each year to survive. And thanks to an expensive wheelchair, he is able to quickly move around his house, giving him a degree of independence.

The child’s parents, Deodonne and Ranjan, are concerned that the GOP efforts to repeal the federal health care law would strip coverage to those with pre-existing conditions. Earlier this year they wrote to Democratic Sen. Jeanne Shaheen, who took to the floor of the Senate in June to highlight Bodhi’s story.

With the Graham-Cassidy bill coming close to securing the 50 Republican votes needed for passage, Bodhi’s plight is front and center again, courtesy of Hassan’s visit. 

Bodhi gave the senator a tour of his home, showing off his room and the wheelchair lift in his garage.

Bodhi’s mother, Deodonne, who left her job as an attorney to take care of her son full time, told Hassan that “there’s a real disconnect between what’s going on in D.C. and what’s going on here.”

“The current bill is tragically misguided,” Deodonne added. “There are so many areas where our son will be hurt by it directly.”

She said her top concern is that the medications he needs to survive will be covered. “Otherwise he won’t survive,” she said. “I wish that those in D.C. could actually be honest about what their bill does, because the rhetoric that’s coming out, the talking points that they’re using, are just false.”

… As with Obamacare, Graham-Cassidy would prevent insurers from turning away those with pre-existing conditions. But the bill would give states the ability to allow insurance carriers to base premiums on a person’s medical history, and to sell leaner plans that don’t cover the 10 essential health benefits currently mandated by Obamacare.

“You look at what the bill actually does, it allows the states to have the flexibility to decide that their plans don’t have offer essential benefits,” Deodonne said.

Ranjan argued that his son “would be covered, but Bodhi is in such a rare disease family, that it would effectively make our premiums so high that we can’t afford to provide the lifesaving drug that every three months he needs.”

Hassan told the parents, that “I am deeply grateful that you are willing to tell Bodhi’s story and your story because it’s a story that a lot of families face.”

“What Bodhi and his mom and dad showed us today is how things actually work and what will happen to Bodhi if he doesn’t have health insurance coverage that is accessible, affordable, in real time, at a critical point for him, so he can get the treatment he needs, have as high a quality of life as he possibly can, and let this family live like any other family because they’ve got access to health care,” Hassan said after her visit.

Hassan’s son Ben was born with cerebral palsy, and she said her visit with Bodhi “certainly does” hit home.

“One of the things that drove me into public life was the experience of having a child with severe disabilities. And my husband Tom and I have been blessed to have private health insurance. But we also needed Medicaid to cover things that private health insurance won’t, just as Bodhi and his family do. More than anything, health care is about people,” Hassan said.