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 measure offers the GOP its final chance this year to repeal and replace the Affordable Care Act, which was signed into law in 2010 by President Barack Obama.
“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 about a year old, he was diagnosed with the incurable disease that affects just 1 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.”
Cassidy argues that his bill does offer protections for individuals with pre-existing conditions, and that the legislation would increase, rather than decrease, the number of Americans covered by health insurance.
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.
Hassan’s visit with Bodhi comes as fellow Senate Democrats and liberal groups launch a full-court press to try to sink the Graham-Cassidy bill, which must pass the chamber before Sept. 30, when Senate rules would require Republicans to secure 60 votes, rather than the current 50 to pass the measure.
Hassan and Shaheen have teamed up often this year at events in the Granite State as part of their push to save and improve Obamacare.
But in rare moment, they didn’t see eye to eye on legislation introduced last week by Sen. Bernie Sanders of Vermont that would establish a Medicare for all, single-payer health care plan.
Hassan, a member of the Senate Health, Education, Labor and Pensions Committee, said she’s placing her efforts right now on trying to prevent the repeal of Obamacare and on trying to improve the health care law.
But she said that she has concerns over Sanders’s bill due to “some of the costs and the kind of disruption that moving to that kind of system might have.”
She added that “as Sen. Shaheen has said, the chance of Medicare for all or a single-payer system passing in a Republican Congress is just pretty much nonexistent. So what I think is really important right now, especially for those on the health policy committee, is to really focus on how we can and stabilize what we have.”