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Anthony Arnold, 40, who has cerebral palsy, a condition he was born with and which has greatly limited his physical development, speaks with the help of a communication device attached to his chair Thursday evening University Park. He said those with pre-existing health conditions without the ACA would profoundly hurt their ability to obtain health insurance.<

Grand Forks man with cerebral palsy: 'I would have nothing' without ACA insurance

Anthony Arnold, 40, has a UND Fighting Sioux tattoo and a power wheelchair that costs more than some cars.

Arnold has cerebral palsy, a condition he was born with and which has greatly limited his physical development. He speaks with the help of a communication device attached to his chair and, on Thursday evening, used his keyboard to read a speech he'd written for a rally against the ongoing GOP campaign to repeal and replace the Affordable Care Act, a move Arnold and the others gathered at University Park with pre-existing health conditions say would profoundly hurt their ability to obtain health insurance.

Before the ACA opened the ability for Arnold to buy his own insurance plan about two years ago, he was on the plan of his mother, Dolly, a former paraprofessional for a local public school system. Arnold said the day he bought his plan was "like the happiest day of my adulthood" and speculated about how the experience of paying for one of his recent surgeries, a dental operation that cost roughly $13,000, could have played out had he been uninsured.

"It would be like swimming in open sea and trying to come up for air periodically," he said. "In my case, I would barely get done paying for one thing and then something else may pop up."

Beyond the surgeries, Arnold also has to think about various training and rehab regimens to maintain his physical abilities. There's also the matter of the technology that helps give his life some normalcy; the chair costs about $10,000 and the speaker is $8,000. Both have a use period of about five years before Arnold needs to replace them.

His comments drew murmurs of agreement from the audience at the rally, which was organized by local civic group Equal Rights for All and attended by a cross-section of Grand Forks, including members of the Performing for Change theater group representing people with disabilities. Many of those who came to the event wore stickers proclaiming "I have a pre-existing condition," and carried signs advocating for protections of Medicaid and declaring health care as a right, not a privilege.

Arnold was one of a series of speakers that shared their experiences with health care and addressed what they believed would be the harmful realities of the potential ACA repeal. The elimination and replacement of the health care law was a campaign promise of President Donald Trump and has been the subject of a contentious legislative process driven by Congressional Republicans.

A draft of the Senate GOP American Health Care Act bill released Thursday would cut back expansions to Medicaid, such as that enacted in North Dakota, and would shift more financial responsibility for the program to the states. It's not clear yet how people with pre-existing conditions would fare under the bill, but moderate Republicans are wary of a proposal on the table now that could effectively cut protections for that pool.

Many who fit that description in one way or another were at the park in Grand Forks, as were representatives from the office of Sen. Heidi Heitkamp, D-N.D., who has opposed the bill.

Anthony believes the ACA could use some reworking, but for the most part he says it's been "liberating" for him. Before he made his speech, he summarized his feelings about the AHCA as he knew it then.

"I'm scared because I would have nothing," he said.

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