COLUMBUS, Ohio — Michael Spitzer, a 2-year-old from Upper Arlington, says hello to everyone — even in the grocery store. He likes hot dogs and French fries and watching airplanes fly.
“He dances to any music that is playing,” said his mother, 37-year-old Lauren Spitzer. “So in an elevator, even if it’s bad elevator music, that kid is dancing.”
Michael also is a little kid living with cystic fibrosis — a condition that affects the lungs and, for him, means aggressive treatment for coughs.
Michael is healthy right now, but his condition could change anytime. Spitzer says she’s concerned about how the proposed Republican health care bill in the U.S. Senate may affect her son’s access to medication if he needs it in the future.
The legislation under consideration guarantees coverage for people living with pre-existing conditions, such as cystic fibrosis. But it would allow states to apply to waive coverage of 10 essential health benefits currently mandated by Obamacare — like prescription drugs. The bill appears to have stalled for now because Republicans can’t find enough support within their party to pass it, and Democrats unanimously oppose the legislation.
Ohio Matters is a series examining important national issues through the eyes of people living across the state.
Disagreement and concern over the bill isn’t limited to Congress. Parents in the Columbus area with children diagnosed with pre-existing conditions, like cystic fibrosis or type 1 diabetes, say that allowing states to opt out of covering prescription drugs could leave their kids vulnerable.
“When your condition requires you to have that medication just to carry on, that feels like not really having coverage,” Spitzer said. “So if they’re saying, ‘well you can have health insurance, but it doesn’t cover your medication,’ then, it’s like, what does it cover? Because that’s what I need health insurance for.”
The cost of a chronic condition
Owen Friend, an 8-year-old from Hilliard, was diagnosed with type 1 diabetes last October. His father, Steve Friend, estimates his family spends $2,000 every 90 days to help pay for his son’s medication. The family has private insurance through an employer.
Friend, 48, said he’s concerned about what would happen if states could opt out of mandating coverage like prescription drugs.
“The fact the state can opt out of it makes me wonder how much our state will actually care for us, when this time comes,” Friend said.
He hears about legislation that could lower drug costs, but he said it doesn’t seem like a reality to him. Friend said he believes the costs of prescription drugs will only continue to rise. He worries about Owen’s future: He wants his son to be able to support a family someday, and buy a house. He worries that his son might some day have to choose between his medication and food.
“I know some people might think of this as an extreme example of our fears,” Friend said. “This isn’t something that we’re making up for drama or for people to feel sorry for us – it’s a legitimate fear for us.”
Friend considers himself a life-long Democrat and said he’s frustrated by the stalemate in the federal government — he doesn’t believe health care should be a partisan issue. He wants Democrats and Republicans to put away their differences and work together on the health care legislation. He said he wants a plan that’s good for all Americans, not for one political party.
“This isn’t a game for some people. This is actually their lives. This is my son’s life. This is how he will be able to afford treatment,” Friend said. “And messing around with my son’s health care and how he’ll be able to live the rest of his life is — it’s not a joke. It’s not a game.”
Still, Friend says he shields Owen from most of the debate over health care. These weighty policy issues could affect the most carefree Americans: children.
“When he’s 8 years old, he cares about throwing a Frisbee, he doesn’t care about what current health bill legislation is up for debate,” Friend said.
What the future holds
Cassandra Freeland, of Clintonville, said her 13-year-old son Adam was diagnosed with type 1 diabetes just over a year ago. They’ve talked about the health care legislation, but he still has a hard time wrapping his head around the subtleties of insurance — and she says she does, too.
Freeland, 46, has private insurance through an employer, but still spends a bundle on her son’s medication. She recently paid $1,200 for a 90-day supply for one kind of insulin — and that’s with the insurance-negotiated discounted rate.
If prescription drugs weren’t covered by insurance, she said, her family would have to make some hard choices. She thinks her family will be OK in the short term, but she worries about what might happen when her son becomes an adult and has to navigate the health care system solo.
“If you think about him out on his own, looking for insurance, a policy that doesn’t cover those essential benefits, that doesn’t cover prescription drug care, is not going to take him far,” she said. “The costs are astounding, and they’re never going to end. The cost of insulin is kind of ridiculous.”
She said she’s encouraged by Gov. John Kasich and says she doesn’t believe he would let prescription drug coverage lapse in Ohio. But she worries about how lawmakers in the future may act. Until having kids, she said, she held fairly middle of the road political views. But now she’s become much more liberal.
“I have some hope because I think that’s not the direction our governor would go, but four years from now or six years from now, who knows?” Freeland said.