‘A matter of life and death’

Elm City residents worried about repeal of Obamacare

NEW HAVEN >> New Havener MnikesaWhitaker-Haaheim, a former teacher at Fair Haven Junior High, suffers from a rare and progressive inflammatory muscle disease, antisynthetase syndrome, and says the insurance she can only get by virtue of the Affordable Care Act “is a matter of life and death for me.”

Her husband, Justin Haaheim, suffers from narcolepsy and chronic migraines and takes medication that would cost him $75,000 a year without the ACA, aka “Obamacare.”

Maggie Quinn of Bethany fell and broke her back in several places back in 1991 and, with that whopper of a pre-existing condition, wouldn’t be able to get insurance were it not for the ACA.

Sheila Wilson has been able to manage her Type 2 diabetes — and still hold on to enough money to raise three kids — with help from health insurance she obtained through the Affordable Care Act. She worries that Congress may take her insurance away “and we’re going to have to choose between whether we pay our rent or get healthcare.”

And Alexis DeCecchi suffers from natural killer cell deficiency syndrome and said, “I’m here (alive) mainly because of the Affordable Care Act.” The ACA “has allowed me to regain a quality of life that I had lost,” she said.

All sat around a table at Manjares, a Westville eatery, Saturday afternoon and told their individual stories as part of an effort by U.S. Rep. Rosa DeLauro, D-3, to shine some light on the need for the Affordable Care Act and what might be lost if Republicans in Congress repeal it without putting a suitable replacement in place.

DeLauro’s intent in organizing the roundtable discussion was to answer the question, “What would repeal mean to us?”

She includes herself among the “us” because she herself is a survivor of ovarian cancer, which would make obtaining insurance difficult without the ACA — and, of course, were she not a member of Congress.

“There is an effort that is underway by my colleagues on the other side of the aisle to quickly repeal” the Affordable Care Act” and access to any number of services we now take for grants, including mental health services, are at risk, DeLauro said.

DeLauro said she recognizes the Affordable Care Act has flaws and “needs to be changed,” but said “there are a number of ways that we can address what needs to be changed without repealing it.”

Whitaker-Haaheim, who was forced to retire from her teaching job in 2001 after 15 years on the job — and given three to five years to live at the time — is still here. But these days, she travels with a portable, rolling ventilator to help her breathe. She said she didn’t ask to be sick, and understands that she may live for years more, or just for a few months.

She was never the kind of person to expect things for free, but as a result of her illness she has needs that go beyond her ability to pay.

“I have 14 doctors” and is on a dizzying array of medications, Whitaker-Haaheim said in interview before the meeting. “I’ve never, ever taken something that I didn’t pay for — but even if I did, that doesn’t mean I should die.”

She told DeLauro later that “every day that they delay” in coming up with a suitable plan to replace Obamacare “is a day that’s not promised to me.

“I don’t have time,” Whitaker-Haaheim said. “I just don’t have time.”

Domenique Thornton, former mayor of Middletown and general counsel of Mental Health CT, also has been touched personally by the Affordable Care Act.

She’s the mother of three daughters, one of whom is a survivor of both sexual abuse and domestic violence — both of which give her what qualifies as pre-existing conditions that could prevent her from obtaining health insurance without the assurances that Obamacare provides, she said. Now, she could lose it. “How can they take away the insurance of 24 million people nationwide,” Thornton asked. “That wrong!”

The event came as Democrats in the House of Representatives held a national day of action to raise consciousness and stir up constituents to protect the Affordable Care Act.. More than 80 Members of the House Democratic Caucus were to participate in ACA-related events.