The children who are no longer being left behind

THE CHILDREN WHO ARE NO LONGER BEING LEFT BEHIND…. The irony of Sen. Ron Johnson’s (R-Wis.) ugly screed against the Affordable Care Act is how backwards it is. He and other conservatives are concerned that the health reform law might make it harder for ailing children to get needed care.

The reality is the exact opposite.

A year ago, the parents of a little girl in Ohio were worrying that they would soon exceed the lifetime limit on their health insurance. Taylor Wilhite had been diagnosed with leukemia at age 8, and her treatment — rounds of chemotherapy, a bone marrow transplant, long hospital stays — had been stupendously expensive.

“No one tells you that you have a cap” on coverage, says Amy Wilhite, Taylor’s mother. When a social worker warned the Wilhites that they should check, they learned their limit was $1 million. By then, they had spent $770,000. Taylor’s father’s company managed to negotiate the maximum up to $1.5 million, but Taylor’s oncologist said the cost of her care could hit $3 million to $4 million. “I was just frantic,” Amy says.

As the cap got closer, the Wilhites began to put off care for conditions that weren’t life-threatening, but the bills kept mounting. “The cost of medicine, you just wouldn’t believe,” says Amy. And hospital room charges — “you’d think she was in a resort.”

The options for people near the limit weren’t pretty. Cancel all but essential treatment, scramble for charity care, or contemplate bankruptcy. But then came a reprieve. The health reform legislation, which President Obama signed into law a year ago today, contained a provision that barred insurance companies from setting lifetime limits.

The provision took effect last September, and suddenly, one huge concern was gone. Taylor, now 12, isn’t entirely out of the woods; her leukemia is in remission, but she needs continuing care and monitoring, and a hip that deteriorated during her procedures requires that she use a wheelchair to go long distances. But the Wilhites no longer have to worry about hitting the insurance limit — and, from now on, other people struggling with their own or a loved one’s devastating illness won’t have to endure the added anxiety that the money will run out.

A similar story is found in California with the Walters family, whose young daughter Violet was diagnosed with a dangerous form of epilepsy, but who was able to get care thanks to the Affordable Care Act. There are countless other stories across the country, just like these.

The Republican message to these families is pretty straightforward: “We’re going to fight like hell to take away the benefits that saved your family. But don’t worry, you’ll love our ideas about medical malpractice reform.”

The conservative crusade to gut the American health care system bothers me, in large part because of its cruelty. If the GOP kills the Affordable Care Act, real families — the kind of folks who are often lost in the competing statistics and poll-tested talking points — will suffer. Some will suffer a lot.

It’s obviously not just about sick kids running into lifetime limits, though that’s certainly part of it. This is also about folks with preexisting conditions who’ll finally be able to get coverage that can’t be taken away, and young adults who’ll have insurance they’d otherwise lose, and small businesses who can cover their employees for the first time, and seniors who’ll be able to afford medication.

Put aside the ads and the palaver that pretends to be our public discourse, and you’ll see a part of American life that’s easy to overlook: this health care law is making a difference. It’s helping people who need a hand. It’s taking a system that wasn’t working and making it better. The right is nearly as hysterical today as it was a year ago, but frankly, it’s not even clear why conservatives are so furious. Ask the typical critic and he probably can’t even explain what it is about the ACA he finds so offensive.

And I’m not sure I care. Policymakers debated reforming the dysfunctional system for about 100 years, and in 2010, Democrats finally got the job done. Craven Republicans remain desperate to strip families of their benefits, no matter who’ll suffer, no matter what it does increase the deficit, no matter what it does to Taylor Wilhite and her family.

And who knows, maybe the right will even succeed at some point, and we’ll all go backwards, stuck in a system that cost too much, covered too few, and left too many in bankruptcy.

But a year later, I don’t mind admitting that I’m awfully glad they passed the damn bill.