Concord Monitor: Shaheen hears ACA concerns at roundtable

By ELLA NILSEN

Monitor staff

Even though Sabrina Dunlap’s family doesn’t depend on the Affordable Care Act for insurance, the thought that the federal health care law could be repealed still keeps her up at night.

Dunlap of Hopkinton has a 4-year-old daughter with a very rare and severe systemic disease where her body is constantly attacking itself, thinking it’s fighting off something that isn’t there.

“It’s a very severe disease and kids do die from it,” Dunlap said.

Luckily for her family, there is a biologic medication that can treat her daughter ’s disease. Dunlap calls it a “gamechanger.”

But that medicine is so specific and so expensive, insurance only covers it when it’s administered in a hospital setting. The family regularly travels to Boston for the life-saving remedy.

“You’re talking about medications that are astronomically expensive, but for us, it’s a matter of life and death,” Dunlap said.

Dunlap and five other local residents shared their concerns at a roundtable hosted by Democratic Sen. Jeanne Shaheen Friday at the University of New Hamshire School of Law.

People who would be affected by a repeal of the Affordable Care Act shared their stories, including two local business owners and a mother whose adult son was able to get his addiction treatment covered by the state’s insurance exchange.

“Repealing it with no replacement plan is not the answer,” Shaheen said.

Concord resident Nansie Feeny said her son was only able to get treatment for his heroin addiction through the state’s insurance exchange.

Before he got insurance, their family was unable to pay the $800 in cash needed to get into a treatment program.

At one point, Feeny had joined her son’s search for strips of the maintenance drug Suboxone sold on the street – desperate to keep him from using heroin.

“I believe eventually I would have buried my son,” Feeny said. “Your kid is your flesh and blood. If somebody said you need to die for them, you would say, ‘where?’ You wouldn’t even ask.”

With insurance, her son is able to get treatment and therapy covered. Heroin has taken its toll, but things are better, Feeny said.

“His opportunity exists because of the medical community helping and that’s a vital piece,” she said.

If a federal repeal goes through, Dunlap wouldn’t directly lose insurance, as her family currently gets it through an employer plan. However, if other provisions of the federal health care law disappeared, it would have a huge impact on her child.

For instance, even though the family is already covered by a highdeductible insurance plan, a repeal the heath care law’s prohibition on annual and lifetime dollar limits could mean her daughter ’s medication would become unaffordable.

“We would blow through a lifetime cap of a million bucks in a short time,” Dunlap said. “That is huge for us.”

She worries a repeal could also mean her 4-yearold would face denial for her disease being considered as a pre-existing condition. Dunlap has been listening to Republican’s plans for replacement and is nervous about high-risk pools coming back.

“There are children who are born this way,” Dunlap said. “It’s an orphan drug, it’s a rare disease, and it’s very expensive. The notion you can cherry pick stuff out of the ACA and get rid of the stuff that annoys people is ludicrous to me.”

“You’re talking about medications that are astronomically expensive, but for us, it’s a matter of life and death.”