Many millennials now launching into adulthood have their hands full — jobs, homes and partners. But 33-year-old Ford Inbody already is thinking about a time when he won't be able to work.
He has Parkinson's disease.
Every night after work, he and his wife, Cortney, walk their two dogs through their neighborhood in Overland Park. These days, going out for an evening's stroll is easy. But many of their evening conversations revolve around a time they know is coming — when these walks will be more difficult.
Inbody was diagnosed with young-onset Parkinson’s disease three years ago. When he was 25, he started noticing confusing health symptoms like joint stiffness, tremors and loss of smell. He says initially he was relieved to get a definitive diagnosis.
“Once I knew that and then I started doing more research about it, that’s when it became a little bit scary. ’Cause there is no cure. There is no way to slow the progression of the disease,” Inbody says.
The diagnosis made the couple dramatically rethink their future. Inbody says the degenerative disease will eventually force him to stop working.
"We had to very much start considering life planning," he says. "We had to make sure, you know, are we going to have enough income."
They're not planning to have kids and are bracing for a more modest lifestyle than they once imagined. They now stay with his grandmother to cut costs. But Inbody always figured that, no matter what happens, he’d be able to get private insurance at a reasonable price – despite his condition – on the Affordable Care Act exchange, and eventually go on Medicaid because of his disability.
Ever since the election, he’s been preoccupied following the Republican plan to repeal and replace Obamacare. He actually read the entire replacement plan and was somewhat relieved to see it keeps the requirement that insurance companies must cover preexisting conditions.
“It’s definitely not like a complete ‘all is lost’ situation, and I’m not like jumping from the roof and concerned that Republicans are trying to doom me to a life of no care,” Inbody says.
But he does have questions about how this will play out for him.
Chris Sloan, with the research firm Avalere Health, says it’s true Inbody will have access to insurance. But he may end up paying more for less care. For starters, there’s a big difference between how the new tax credits compare with the ACA’s subsidies, which help cover insurance costs.
“The changes to the tax credits and to the subsidies available could mean that he has to pay more,” Sloan says. “And depending on his finances, some of the changes could mean that he has to pay a lot more to get coverage on the individual market.”
Currently the ACA subsidies are pegged to one’s income and where one lives. Under the Republican proposal, he and his wife would get a flat $5,000 per year to help pay for coverage. So when Inbody stops working, he won’t get extra help paying for his insurance.
And that’s not all. The ACA also provides extra help to low-income people for out-of-pocket costs.
“With this new proposal, that just doesn’t exist anymore,” Sloan says. “So even if you’re getting a tax credit to pay for premiums and can afford your premiums, people in this market are also going to have to look and say, ‘Can I afford the cost sharing to get the services I need, even though I’m paying the premium?’’’
Sloan says there’s also nothing in the new plan to address another problem that’s already happening with plans under the ACA – they’re covering fewer medications and the networks of doctors and hospitals are getting narrower.
That means Ford and people like him who have specific health needs they absolutely can’t do without will have to be very careful shoppers.
“He is going to have to really know what doctors he needs, what medications he needs and check when he’s picking a plan that they cover those things, because he’s not just going to be able to assume, ‘Oh, they’ll cover my products,’” Sloan says.
And then there’s Medicaid, which Inbody may end up on because it covers people with disabilities. The Republican plan limits how much money states get for each Medicaid recipient—and that amount goes up based on inflation, not increasing medical costs. So eventually, Sloan says, the federal government will give states a lot less money.
“And so then the state has to make a decision. In Kansas’ case, they’ll have to say, ‘How do we make up that difference?’ And they can narrow benefits, or they can say, ‘You know what, we’re just going to reduce eligibility,’” Sloan says.
Meaning they may limit who gets Medicaid.
Inbody hopeful the new plan will help him and others with health problems, but the politics of health care frustrate him.
“The Republicans, they want it their way. And the Democrats are going to do everything they can to refuse a Republican victory,” Inbody says. “And really what that means in the end is something completely ineffectual that doesn’t really help anybody is going to get passed. And nobody’s really going to be happy about it.”
Alex Smith is a health reporter for KCUR. You can reach him on Twitter @AlexSmithKCUR