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Concord mom worries weakening federal health care law will threaten life of her son

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Deodonne and Ranjan Bhattarai watch as their 18-month-old son Bodhi navigates his wheelchair for one of the first time at the State House last week. The family was there to pick up a proclomation signed by Governor Hassan. (GEOFF FORESTER / Monitor staff)

Concord mom worries weakening federal health care law will threaten the life of her son.

The mother of a 4-year-old boy in Concord who suffers from a rare neuromuscular disease said she’s deeply worried about her son’s ability to survive if the national health care law continues to be weakened.

“I fear for my son. I fear for our ability to maintain not just insurance coverage but quality coverage that covers the things that his life depends upon,” Deodonne Bhattarai said Monday as she stood in between Sens. Jeanne Shaheen and Maggie Hassan during an event at Riverbend Community Mental Health.

New Hampshire’s two Democratic senators blamed President Donald Trump and his administration for “sabotaging” the Affordable Care Act – better known as Obamacare. The ongoing efforts to erode the law has resulted in rising prescription drug prices, skyrocketing health insurance premiums and weakened protections for pre-existing conditions.

Hassan, who sits on the Senate’s Health, Education, Labor, and Pension Committee, claimed that “the Trump administration is pulling us backward, taking steps to sabotage our health care system and raising costs for consumers.”

Bhattarai, a Contoocook native who now lives in the Heights on Concord’s east side, is the mother of Bodhi Bhattarai. The boy 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.

“Our son fights every day. He is a mighty warrior, and he shows what real strength is,” Deodonne Bhattarai said Monday.

Deodonne and her husband, Ranjan, were concerned about the GOP efforts to repeal the federal health care law would strip coverage from patients with pre-existing conditions. Early last year, they wrote to Shaheen, who took to the floor of the Senate to highlight Bodhi’s story.

Last September, during the unsuccessful effort by congressional Republicans to repeal Obamacare, Hassan visited with Bodhi in his home to highlight the push to save the health care measure, which President Barack Obama signed into law in 2010.

On the campaign trail, Trump and congressional Republicans promised to repeal and replace the health care law, which has long been opposed by conservatives. And even after multiple efforts to repeal failed in Congress last year, the GOP has chipped away at core aspects of the law, including a provision in the tax bill earlier this year that eliminated the individual mandate that Americans have health insurance. And a budget plan currently in the works on Capitol Hill also lays the groundwork for another potential attempt at a full repeal.

“The current actions by this administration are misguided, they are destructive and will result in taking our ability to fight away from us. And it will cost,” Bhattarai said Monday.

“For the 25 percent of Americans who have a pre-existing condition, the reality we face on a daily basis is very simple: An insurance card that covers nothing means nothing,” she said, her voice trembling as she spoke. “Failing to protect those of us with pre-existing conditions and disabilities from discrimination by insurance companies will result in a heartless tally of battles lost and lives taken too soon, and among them will be my son.”

Shaheen said the president is doing everything he can to undermine the Affordable Care Act.

“The Trump administration is intentionally using every means at its disposal to cause chaos in the healthcare marketplace, to keep consumers in the dark about what their health care options are,” Shaheen said.

The most harmful action was the administration’s “refusal to defend the health care law against partisan lawsuits which jeopardized critical pre-existing conditions protections.”

While the president has long called for the scrapping of Obamacare, Trump has said that pre-existing condition protections should be kept. But the move this spring by the Justice Department to refuse to defend the existing law in court challenges puts those protections in peril.

If that aspect of the law falls, Hassan said patients will suffer.

“That means that insurance companies would go back to the days when insurance companies would be allowed to discriminate in pricing or in coverage altogether against people who have been sick. It’s as simple as that,” she said.

Public opinion polling has indicated that the consumer protections were one of the most popular parts of the law.

Both Shaheen and Hassan vowed that they would continue to protect the health care law and asked those who depend on coverage to “urge the Trump administration, to urge our Legislature here in New Hampshire, to urge Gov. Sununu to fight to keep the Affordable Care Act intact.”

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