I MUST BE A terrible person, I really must be, because I confess that I have the occasional urge to cast an evil spell. It’s always the same spell and it would be cast on those people who go around insisting that we repeal Obamacare as soon as possible. As a result of my spell, for one week, these people would believe their child has a chronic illness and that they are at risk for losing their insurance coverage — not today, perhaps, not next month, but at some unspecified point in the future. Of course, even in my worst moments, I never wish any actual harm upon the child. And the harm I’d visit upon the adults would be temporary — seven days and the spell would be lifted.
But for that week I’d have them believe that their beloved child had, say, cystic fibrosis. It’s an awful disease that afflicts only about 30,000 Americans. Most children begin to suffer at birth, some a bit later. Sometimes it’s chronic lung infections, or chronic sinus infections; sometimes an inability to gain weight and grow. Later, it can involve diabetes, heart issues, digestive pain, muscle aches, but it always means one, two, or three sessions of chest physical therapy every day of their lives — a ritual in which a parent spends 45 minutes drumming on their child’s back and sides. Later, the child might have a pneumatic vest perform the same function, and that will shake her as violently as if she’s using a jackhammer.
Extensive medical treatment will be inevitable — quarterly checkups with all kinds of blood tests, sputum cultures, CT scans, breathing tests. Hospitalization would be likely, too, usually for a week of IV antibiotics to kill an infection, but sometimes for early sinus surgeries and the attendant complications. The child might take up to a dozen different medicines every day, some with annoying side effects; much later, there might be talk of a lung transplant. And in the meantime the suffering would be immense, a kind of extremely slow suffocation that goes on over decades, or at least until age 37, which is the median age of survival at this point.
There are remarkable new drugs in the pipeline, and the promise of a cure for cystic fibrosis waits down the road. But how far down the road the parents would never know, and for most of them it wouldn’t matter anyway because these drugs would be so expensive that, without insurance, they’d be able to pay for them only if they were very wealthy. Oh, and their child wouldn’t be able to seek comfort from other sufferers, because people with CF aren’t supposed to socialize with each other for fear of cross-infection with lethal bacteria — harmless to the rest of us.
I know a lot about cystic fibrosis because one of our daughters is afflicted. Trust me, it isn’t a result of anything she did. She doesn’t smoke now, and certainly didn’t smoke when she was diagnosed 11 years ago, at age 3. It’s a tiny genetic glitch, a protein that mutates in a weird way. One in every 30 adults carries the gene for CF, but it’s only when two carriers produce a child together that there’s a chance of the disease showing up in their offspring, a 1-in-4 chance to be exact. When our daughter was diagnosed I began to write about the disease for various magazines. The first two people I wrote about have died. They were 22 and 23.
Repeal Obamacare? Imagine your child has a chronic illness and that you are at risk for losing your insurance coverage. Imagine waking up in the middle of the night and thinking about the choice between medicine and mortgage.
In casting this spell there are lots of other diseases I could choose from, of course. The list is too long for this page. And, please remember, the spell would only be mental. Just the worry factor: if we have to change coverage, and if insurance companies can refuse to cover us because of the pre-existing condition, will we be able to afford to get our son or daughter treated? For this one week I’d have the parents wake up in the middle of the night and think about the choice between medicine and mortgage. Just for a week, really. To inflict any more on them, just because they don’t like government interference in their affairs, well, that would be heartless.