Juvenile Glaucoma, Health Insurance, and the New New Year

When we rang in 2014, it wasn't a fresh and optimistic start like one might hope. I had two big problems that needed immediate attention. First, as of Jan. 1 we were switching to a new insurance plan, and we didn't have membership cards or even numbers yet. When we called the new insurance company to try to get that information ourselves, they'd never even heard of us. We were functionally uninsured.

Second? A routine optometrist visit the day after Christmas had ended with an urgent referral to take my younger daughter to the ophthalmologist. She showed some concerning signs of juvenile glaucoma.

Glaucoma is a progressive disease; it slowly steals the sight from your peripheral vision, hair by hair, until you see the world through a tiny window. One day, even that window closes. It's slow but relentless. The vision glaucoma takes can never be recovered.

So for a short time early this year, I got some firsthand experience with the terror of knowing your child requires immediate medical care, but not knowing how to pay for it. Our choices were: wait until the insurance issue was sorted out -- which could take weeks -- or pay for a visit to the ophthalmologist out of our own pocket and cross our fingers that it might one day be reimbursed. That would be $250, the office staff told us.

They urged us not to delay.

Our insurance was held up by paperwork; the insurance broker hadn't submitted our enrollment in time, or maybe the enrollment hadn't been processed fast enough by the insurer. Nothing to be done, it was an act of god and government.

We were by no means alone. With the ACA coming into effect, insurance companies were overwhelmed with a glut of new enrollments, but we would be covered retroactively. In theory, anyway; in practice, the inability to get an insurer-approved referral from a primary doctor might nix the chances of reimbursement. And the process of actually getting that money back could take as much as six months.

We're very fortunate that in this case, we could afford the financial hit and see the ophthalmologist anyway. Even so, the days before that appointment were harrowing.

The Appointment

There was an examination. The doctor, whose manner with children is so playful that he's very nearly performing a standup routine, turned to me with a sober expression on his face. Her optic nerve was enlarged, just like the optometrist had said. He explained the cup-to-disc ratio to me.

"In a healthy Caucasian," he said, "it's normally 0.1 to 0.2. In an African-American, you expect 0.2 to 0.4. Your daughter's is 0.9."

He told me not to worry. It's never glaucoma, he said; in his 30-year-career, it had only turned out to be glaucoma once, and that had been effectively cured with a simple surgery. The odds were overwhelmingly in our favor. "Don't be worried," he said. "You can't be worried if I'm not worried, and do I look worried?" But his face was somber, his tone grim, and he pressed me to promise I'd wait no more than three weeks to bring her back for follow-up testing. Promise me, he said. No matter what.

Those tests would be expensive, he added. So very expensive, in fact, that insurance companies themselves will balk at paying if you perform more than one of them on the same day. I scheduled the follow-up appointments (at a potential $250 a pop, plus unknown additional fees for testing, with intimations that they'd run into the thousands of dollars.) I crossed my fingers hoping the insurance company would come through before then. What other choice did I have, after all? In a pinch, well, there's credit, or family. We could find the money. It would be OK.

Meanwhile, she needed glasses immediately. Not for her vision -- she only has a mild astigmatism -- but to protect her freakishly enlarged optic nerves from impact damage.

Even if it was glaucoma -- and it probably wasn't -- we could treat it. The equation for us was more one of managing discomfort and inconvenience than walking the line of catastrophe.

Still, these days in January were agonizing. It becomes difficult to concentrate, to sleep. In such a situation, you run through a million scenarios. What if it is glaucoma? What if one surgery doesn't do the trick? What about complications? How will she endure that? What if we really don't have insurance, and something has gone so horribly wrong that we won't be covered in time? And what if it costs so much that we can't find the money after all? 

A tightness settles into your chest. You cry more easily, you snap more easily. Perhaps you can keep it together during the day, when you're soothing worried relatives, when you're shuffling children off to school and cooking dinner and signing homework sheets. Mustn't frighten the children; they can't see you worry. 

It erodes at you, this worry. Maintaining the illusion that nothing is wrong nibbles away the edges of your ability to cope. If it keeps up long enough -- well. There are marks.

Toward the end of the month, the insurance came through, and the ophthalmologist scanned my daughter's retina with lasers. He was visibly relieved. The result was good -- so good that we moved additional follow-up testing to late May. We've since discovered that an older relative has a similar ratio, and no apparent glaucoma. So: a family congenital anomaly. No big deal. It's possible my kid has some field-of-vision problems, and she appears to have problems with color perception in one eye... but this is a hell of a lot better than surgery and looming blindness. We'll take it.

(And this isn't even including the almost-fire we had the first week of the year, which required we air the house out to eliminate smoke on the coldest night in twenty years. Which is its own blog post, in a way. Polar vortex, huh?)


When I wasn't busy being scared, I thought a lot about fairness in that time. I thought about poverty and privilege and insurance. I thought about the role of government in society.

I thought about all of the families for whom it really was glaucoma (or cancer, or diabetes, or leukemia, or...) who didn't have the resources to pay out-of-pocket and damn the insurance. People who still have no insurance, or have a plan with such a high deductible as makes no difference. The ones for whom that decision would mean missing rent or missing meals.

I've always been an advocate of single-payer insurance. No family should have to weigh those factors. No child should suffer a treatable illness with permanent or fatal results because their family doesn't happen to be comfortably middle-class. Oh, sure, health care is available to everyone at an emergency room. But you know what? You can't get glaucoma (or cancer) treated in an emergency room.

In New York State, the Working Families Party is now pushing for single-payer insurance. I would urge you with all my heart to support such legislation in your own state (if you're American, anyway.)

This is not an economic issue, and it's not a public health issue. This is not a matter of controlling costs or ensuring a healthy workforce. This is a moral issue. 

The New New Year

Even with such a crisis averted, the parts worn away from you by stress take their time to regrow. I've been very fragile this year. It doesn't seem to be returning to normal as quickly as one might hope.

So on midnight going into March 1, I declared it a New New Year. It looks like 2014 has been really rough for many of us, not just me -- the relentless weather, to be sure, but there's also been a zeitgeist of uncertainty and fear. We're quick to anger. We're prone to falling victim to brain weasels. It's been a bad time.

But spring is right around the corner.

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