Joshua Scussell (second from left) with his wife, Heather (left) and Blaire Broda, his bone marrow donor. At right is Blaire's husband Joel. Courtesy of Joshua Scussell
Cindy Jalbert: Without knowing whether she will be able to buy insurance with a pre-existing condition, her husband is putting off plans to retire.
Cindy Jalbert: Without knowing whether she will be able to buy insurance with a pre-existing condition, her husband is putting off plans to retire. Courtesy of Cindy Jalbert

Cindy Jalbert retired eight years ago to help take care of her grandchildren, and she was eagerly awaiting the spring, when her husband would retire too. The plan was for Cindy, who’s 63 and has type 1 diabetes, to buy health insurance through the state’s Obamacare exchange.

That all changed Nov. 8.

“The night of the election, my husband said to me, ‘You know that if Trump wins, I can’t retire,’” Jalbert, of Windsor Locks, said.

Before he was elected, Donald J. Trump pledged repeatedly to repeal the Affordable Care Act, which, among other things, requires insurance companies to sell policies to people with pre-existing conditions, like Jalbert.

Trump has since said he’d like to keep some portions of the health law, including the requirements affecting those with pre-existing conditions. But Jalbert isn’t taking chances until she knows what the president-elect and Congress will do – until she can say with certainty that she’ll be able to buy insurance until she’s old enough for Medicare.

“I was devastated,” Jalbert said. “My whole life changed.”

She knows many people have worse problems. Still, because of the diabetes, she has a shorter life expectancy than most people, and was looking forward to spending more time with her husband while she’s healthy. “We’re in limbo,” she said.

The uncertainty over the health law’s future also means uncertainty for many Connecticut residents who have relied on it. To some, like Jalbert, it means waiting anxiously to see what will happen to benefits they had come to count on, or planned to use. Others are hopeful that there could be fixes to what they see as the shortcomings of Obamacare, particularly when it comes to affordability.

“I look forward to the new uncertainty,” said Debra Chamberlain of Groton, whose family’s health insurance premiums nearly doubled for coverage that she says now requires them to pay more out-of-pocket. “I’m looking forward to change again because the previous change didn’t help.”

Obamacare is personal for thousands of Connecticut residents. As of October, 204,689 poor adults in Connecticut were covered by part of the Medicaid program that was created under the health law. Another 99,038 had private insurance purchased through the state’s health insurance exchange, and more than three-quarters of them received federal tax credits, made available through the health law, to discount their monthly premiums. (While some portion of them had insurance before, the state’s uninsured rate has fallen since the health law’s major coverage provisions took effect in 2014, from 9.4 percent in 2013 to 6 percent in 2015, according to Census figures.)

Far more people have health plans that now operate under different rules because of Obamacare: Insurers can’t deny people coverage if they have a pre-existing condition. They can’t limit the dollar value of coverage someone receives in a year or over a lifetime. Many forms of preventive care are now available at no cost to patients.

‘It saved my life’

Joshua Scussell (second from left) with his wife, Heather (left) and Blaire Broda, his bone marrow donor. At right is Blaire's husband Joel.
Joshua Scussell, second from left, with his wife, Heather, left, and Blaire Broda, his bone marrow donor. At right is Blaire’s husband Joel. Courtesy of Joshua Scussell
Joshua Scussell, second from left, with his wife, Heather, left, and Blaire Broda, his bone marrow donor. At right is Blaire’s husband Joel. Courtesy of Joshua Scussell

Joshua Scussell has friends who complain about Obamacare, frustrated by the rising prices they face for health insurance. But he has a simpler evaluation of the law: “It saved my life.”

Scussell was 23 and working as a substitute teacher in Stafford when he was diagnosed with non-Hodgkin’s lymphoma. At the time, he was on his mother’s insurance plan, something the federal health law allows for young people up to age 26. It covered him through chemotherapy and a stem cell transplant that cost close to $150,000. It covered him when the cancer came back and he had a bone marrow transplant that cost even more.

Scussell was lying in his bed at Smilow Cancer Hospital at Yale New Haven in 2012, as part of the stem cell transplant, when he saw on television that the U.S. Supreme Court had upheld the health law. “The feeling I had was just indescribable, because I knew that was going to keep me alive as I lay there with my body essentially dying,” he said. “It was a pretty incredible feeling.”

When he turned 26, Scussell was in the middle of a year-long isolation period, when he couldn’t leave his home because of the possibility of infection. He got married shortly before he would have aged out of his mother’s policy and became covered by his wife’s insurance. Now, because of Obamacare, he notes, he doesn’t have to worry about being denied coverage because he has a pre-existing condition.

The Guilford resident knows the price of the chemotherapy drugs he took and the medications he now takes, and figures he’d be well past any lifetime treatment cost limit – something insurance policies used to have until the health law banned them.

“I’m sure I’m well over $2 million,” said Scussell, who is 27 and back to work substitute teaching.

Since the election, Scussell has been thinking of the future of the health law. He knows Republicans say they want to keep the provisions that helped him, although he’s skeptical. “We just have to wait and see, but those are the things that really kept me alive,” he said.

And he thinks of others who are in the position he once was, whose health care could hang in the balance.

“I’m scared for them, because it’s just a vital thing for so many people,” he said.

An opportunity to make it better

Debra Chamberlain is hopeful about changes to the health law.
Debra Chamberlain is hopeful about changes to the health law. Courtesy of Debra Chamberlain

Like Scussell, Chamberlain knows firsthand the importance of health insurance. Her 32-year-old son has significant medical needs. He recently had to have two surgeries and spent several days in the intensive care unit – care that she expects cost more than $100,000. Chamberlain said they need to be prepared for that to happen any year.

But she’s more optimistic about what changes to the law could bring.

Chamberlain thinks the result will be a revision of Obamacare – tightening the ship, as she puts it – rather than a wholesale change. And she expects that things that benefit her family will be preserved in whatever changes go through.

“My sense in all of this is that they’re not going to throw the baby out with the bathwater,” she said.

The current system hasn’t been effective in getting people who don’t need medical care to buy coverage, since many choose to pay a penalty rather than paying more for insurance, she said.

Chamberlain and her husband are self-employed; she’s a Realtor and he’s an attorney, and they get their coverage from a small-group policy through his law practice.

Because of their son’s medical needs, they make sure to buy the best coverage available (he can be covered by their plan because he’s disabled). “We’re fortunate that we can afford to pay for it,” she said. “I suspect that you would not get this story from other people.”

For Chamberlain’s family, Obamacare has brought significantly higher premiums – they now pay close to $30,000 a year for their own coverage – and more out-of-pocket exposure when they get care. She’s also noticed an increase in the paperwork and other hassles needed to get care authorized by her insurance company since Obamacare took effect.

“I think there’s an opportunity here and a desire to make it work and to make it better,” she said of the potential for changes to the law.

‘If that means using the ER…then so be it’

Affordability is one of Christopher Doucot’s biggest concerns about the health law too. He and his wife run a small nonprofit in Hartford and he works as an adjunct professor. Their income is slightly too high for them to receive Medicaid, and they buy heavily subsidized coverage through the state’s health insurance exchange.

“Frankly, calling the Affordable Care Act ‘affordable’ I think is a misnomer, because it’s not really affordable, even with the government subsidy,” Doucot said. “The copays, the premiums and deductible is a sizable chunk of change.”

When he got an MRI last year, he first had to take out his credit card and pay close to $800. He and his wife pay $463 per month for their insurance; the federal government chips in another $533.

When asked what he did for health care before Obamacare, Doucot uses a non-technical term: “health care through friends.” With no insurance, he had two operations paid for because he went to college with the surgeon and got the Catholic hospital to write off his other costs. Another doctor agreed to see him for free when he had trouble with asthma.

When their children were younger, Doucot and his wife qualified for the state’s Medicaid program. But he said it was often difficult to get appointments, unless they went to a clinic where they would be seen by a different medical resident every time.

After they got private coverage through Obamacare, Doucot and his wife had their first physicals in more than a decade. He got other preventive care, but questions whether he really needed it.

Doucot doesn’t think health care should be a for-profit industry. He would prefer a Medicare-for-all system.

What would they do if the health law is repealed?

“Well, I don’t know, we’d just go back to figuring it out,” he said. “And if that meant not getting something taken care of, then we don’t get something taken care of. If that means using the emergency room for nonemergency [care], then so be it.”

Over the years, he added, things have worked out for them; they’ve landed on their feet.

But, he noted, they’re getting older. He will turn 49 soon, and his wife is in her 50s.

“We’re at the age where things start breaking down,” he said. “We’ll probably be thinking about it a lot more.”

Arielle Levin Becker covered health care for The Connecticut Mirror. She previously worked for The Hartford Courant, most recently as its health reporter, and has also covered small towns, courts and education in Connecticut and New Jersey. She was a finalist in 2009 for the prestigious Livingston Award for Young Journalists, a recipient of a Knight Science Journalism Fellowship and the third-place winner in 2013 for an in-depth piece on caregivers from the National Association of Health Journalists. She is a 2004 graduate of Yale University.

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