Many millennials have their hands full as they launch into adulthood 鈥 jobs, homes and partners. But Ford Inbody, 33, already thinks about聽a time when he won鈥檛 be able to work. He has Parkinson鈥檚 disease.
Every night after work, he and his wife, Cortney, walk their two dogs through their Overland Park, Kan., neighborhood. For now, going out for an evening鈥檚 stroll is easy. But many of their evening conversations revolve around a time they know is coming 鈥 when these walks will prove聽difficult.
Inbody was diagnosed with disease three years ago. When he was 25, he started noticing confusing health symptoms like joint stiffness, tremors and loss of smell. He said initially he was relieved to get a definitive diagnosis.
But, he said, 鈥淚 then started doing more research about it; that鈥檚 when it became a little bit scary. There is no cure. There is no way to slow the progression of the disease. There鈥檚 nothing really except just symptom management.鈥
Since the diagnosis, the couple has had to dramatically rethink their future.
鈥淲e had to very much start considering life planning,鈥 he said. 鈥淲e had to make sure, you know, are we going to have enough income?鈥
They鈥檙e not planning to have kids and are bracing for a much more modest lifestyle than they once imagined. They live now with Ford鈥檚 grandmother, to save money for the day when the degenerative disease will eventually force him to stop working.
For now he gets health insurance through his job at a law firm, training attorneys on corporate policies. But Ford and Cortney worry about how his condition will progress and how they鈥檒l pay for health care when he can no longer work.
Cortney works in the human resources department for a chocolatier. It is possible Ford could go on her insurance, but when they first ran the numbers, that was prohibitively expensive. So they thought Ford would get private insurance at a reasonable price despite his condition on the Affordable Care Act exchange; then he鈥檇 probably transition to Medicaid when his condition gets bad enough. That鈥檚 been his plan.
Ford, now 33, was diagnosed with young-onset Parkinson鈥檚 disease three years ago. He and Cortney savor his relatively good health today. But the disease is degenerative, which means they鈥檒l likely need an individual health policy one day soon and will eventually turn to Medicaid. (Alex Smith/KCUR)
But ever since the election, he鈥檚 been preoccupied with the developments of repeal and replace.
It鈥檚 a constant concern, he said 鈥 鈥渞eading the news every day, checking out all the different stories that are going on.鈥
Inbody read every word of the released March 6. He was somewhat relieved to see that, at least so far, it includes the requirement that insurance companies cover preexisting conditions in every plan on the exchange.
鈥淚t鈥檚 not like a complete 鈥榓ll is lost鈥 situation,鈥 he said. 鈥淎nd I certainly am not jumping from the roof and concerned that Republicans are trying to doom me to a life of no care.鈥
But he does have questions about how the overhaul of the health law聽will play out, in terms of his situation. , a senior manager with the research and consulting firm Avalere Health, said it鈥檚 true Inbody would be able to get some sort of insurance policy, regardless. But there鈥檚 a big difference between how the new tax credits he鈥檇 get under the GOP plan would compare with the ACA subsidies to聽help聽pay for insurance costs.
鈥淭he changes to the tax credits and to the subsidies available could mean that he鈥檚 going to have to pay more,鈥 Sloan said. 鈥淒epending on his finances, some of those changes could mean that he has to pay a lot more to get coverage on the individual market.鈥
Today, the annual ACA subsidies are based on income and the cost of coverage in each region. Under the GOP proposal, Inbody and his wife would, instead, get a flat $5,000 per year to help pay for health insurance coverage for them both. So when Inbody stops working and the couple鈥檚 income is much lower, they won鈥檛 get extra help in the GOP plan to pay for monthly health insurance premiums.
That鈥檚 not all. Sloan explains that, under the GOP plan, some for out-of-pocket costs will disappear.
鈥淲ith this new proposal, that just doesn鈥檛 exist anymore,鈥 he said.
Sloan said there鈥檚 also nothing in the new plan to stop another problem 鈥 many exchange policies cover fewer medications than employer-based plans, and the networks of doctors and hospitals are getting .
The bill also proposes drastic changes to Medicaid. Inbody could very well end up on Medicaid 鈥 it鈥檚 the insurance rely on.
The Republican plan would limit how much money states get for each Medicaid recipient. And though that amount would go up each year, the increase would be based on overall inflation, not the increase in medical costs. So eventually, Sloan said, the federal government would be giving states a lot less money, relative to the cost of health care.
鈥淭hen the state has to make a decision. In Kansas鈥 case, they鈥檒l have to say, 鈥楬ow do we make up that difference?鈥欌 Sloan said. 鈥淭hey can say, 鈥榊ou know what, we鈥檙e just going to reduce eligibility. Previously, we gave Medicaid to people up to this income. Now we鈥檙e going to take that 鈥 a little bit 鈥 because we need the money. So we鈥檒l save money by not covering these people.鈥欌
For example, consider Inbody鈥檚 case. Restricting eligibility for Medicaid, under the GOP plan, could mean it will be harder for Inbody to get that coverage, Sloan said. Then, 鈥渆ven if he gets Medicaid down the line, how generous are the benefits? Do they cover everything that he needs for his Parkinson鈥檚 condition?鈥
Inbody has hope that whatever legislation is ultimately passed will help him and others with their health problems. But the politics frustrates him.
鈥淭he Republicans, they want it their way,鈥 Inbody said. 鈥淎nd the Democrats are going to do everything they can to refuse a Republican victory. And really, what that means in the end is something completely ineffectual that doesn鈥檛 really help anybody is going to get passed 鈥 and nobody鈥檚 really going to be happy about it.鈥
For now, Inbody said, he鈥檚 enjoying the health he has. He and Cortney headed out last weekend on a Colorado road trip.
This story is part of a partnership that includes , and Kaiser Health News.