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They Call This Insurance?

3 years ago

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When they called my number at the pharmacy I went to the pick-up window and, on a whim, decided to have some fun with the nervous clerk in the white coat.

"Okay," she said, tapping her keyboard. "I see this is a new order. Did they tell you about the co-payment on this?" She had a sick, worried look on her face.

"Yes," I said cheerily. "They said it would be 20 bucks."

To me this was perversely funny, just to watch the poor woman's face contort as she prepared to give me the bad
news.

"Well, no," she said, wincing. "I'm afraid it's going to be a bit more. It's going to be, um, eight hundred sixty-four dollars and ninety cents."

In fact, I already knew this. I had been forced to change health plans when my old employer-based insurance expired -- a switch that had to be completed in a one-day window, lest I lose coverage altogether -- so my monthly chemotherapy medication no longer would be paid nearly in full, as it had been. Instead, I would be charged a "non-formulary co-payment," which meant, incredibly, that my out-of-pocket-cost for these five days' worth of poisonous pills, a charge that would roll around every four weeks, was going to be just shy of $900.

Ouch. But after two-and-a-half years navigating the absurdities and atrocities of the health care system -- not to mention dealing with the constant charm that is brain cancer -- I'm rarely surprised by bad news. I've also found that making an occasional joke helps keep me from totally losing it.

Comedy as self-medication, and with no co-pay!

Except in karma, maybe. In this case the joke turned out to be on me, when two months later, in February, my monthly chemo bill tripled and that $865 charge seemed like a bargain.

Of course there's nothing funny about the state of U.S. health care. As President Obama noted in introducing the White House Forum on Health Reform in March, the cost of health care now causes a bankruptcy in this country every 30 seconds and could cause 1.5 million Americans to lose their homes this year. Obama has vowed to make health reform a priority in this first year of his administration, suggesting that he and a Democratic Congress, supported by a fed-up public, can overcome the interest-group obstacles that have killed previous efforts.

Like a lot of Americans, including many fellow journalists covering health care, I thought I knew something about the subject. Or at least I thought I wasn't likely to be among the health system victims you encounter in the media. After all, I've always had generally good health, eaten well, exercised regularly and seen a doctor when sick, which hasn't been often. What's more, I've always had a good job that included seemingly rich health benefits. Not that I had much occasion to use them. For most of my life, the extent of my medicinal experience has been taking an aspirin three or four times a year after one too many martinis the night before.

That all changed on Nov. 1, 2006.

After an unusually groggy day at the Seattle Post-Intelligencer newspaper office where I worked, I came home, skipped my normal three-mile run, had some dinner with my girlfriend Michelle and waited for the newspaper's star sports columnist to file his piece so I could edit it. I told Michelle I felt nauseous, and went to the bathroom and vomited. That's about the last thing I remember. She told me after I woke up in the hospital days later that I had returned to the living room, looked at her funny and then slipped out of my chair and gone into violent convulsions: a tonic-clonic seizure.

It was the first sign, and quite the attention-grabbing one, that something was wrong.

Many anxious weeks of tests and two brain surgeries later, my medical team determined I had a couple of large tumors: oligodendrogliomas. They resected a large chunk, about the size of a ping-pong ball, from my right frontal lobe. The other tumor, in my left temple, was deemed inoperable.

Thus began more than two long years of treatment: twice-daily doses of Keppra to control seizures, weekly blood draws, monthly oncology appointments, bimonthly magnetic resonance imaging scans (MRIs) to track the tumors, and, inescapably, the 24-month course of chemotherapy.

The Health Care Debate: Much More Than Money

The president has laid out eight principles for reform -- "Make health coverage affordable," for example, and "Aim for universality" -- and has said that while he's flexible on the details, a final plan must stick to his basic framework. The principles aren't negotiable.

Reading about Obama's efforts, including Monday's pledge of cooperation on cost by some big players in the health industry, I feel like I've already had a personal preview of what Congress and the president will confront this year. The "health care issue" isn't just about medicine or even insurance or money, but is a swirling, nearly unnavigable maze of phone jail, PDF forms, conflicting instructions and other bureaucratic thrills that span multiple businesses and sometimes carry contradictory aims -- or at least it has felt that way to me.

I also keep feeling like I'm reading about my own case on the front page of the newspaper.

Unable to work when stricken by brain cancer? Social Security Disability is there to help cover some of your lost income and steer you onto Medicaid for health insurance. Or it's supposed to. Except, as the New York Times reported in December 2007, there is such a backlog of cases, and the Bush administration so underfunded the agency, that it now takes as long as three years to get a hearing -- that's 18 months after the expiration of your Cobra-guaranteed employer health insurance, if you were able to afford to keep paying for it.

Fortunately, I've had private long-term disability insurance, provided through work. It doesn't cover health insurance, but has paid a benefit of about half my former salary since I was unable to return and lost my job following my second surgery. Except, being in the insurance business, the insurer has been angling to cut off my benefit almost ever since.

This is particularly frustrating. I'm a journalist. I've covered insurance fraud. I certainly don't want to be a fraud story. I want to work, which is why I've kept a personal blog, downplaying my symptoms, looking at the bright side, and demonstrating I remember how to put a verb in every sentence. I've contacted numerous potential employers, so far without much luck.

But that instinct seems apt to cost me financially, at a time when my medical bills have crescendoed. The insurance company, now completing a six-month "investigation" of my case, is citing my own blog as evidence that I'm no longer disabled.

That's how they get you, it seems to me. Without summoning the determination, patience and problem-solving skills to wend through the health-care system after you get sick, you're bound to end up among President Obama's grim statistics: the million-plus who might lose a home this year or the two who might go bankrupt this minute. But if you're somehow with it enough to survive the health care obstacle course, you may well lose hold of a thin financial lifeline keeping you from the same sorry result.

Insurance That Doesn't Insure

As chemo goes -- and for that matter, brain cancer -- I'm pretty lucky. Oligodendroglioma is not as deadly, at least not as immediately, as other forms such as glioblastoma multiforme, the kind Sen. Edward Kennedy has. That one, the most common brain cancer, carries a prognosis of several months to two or three years. I've never been able to get a straight answer on my prognosis, but I'm led to believe that with a successful chemo treatment, regular scans and a little bit of luck, I might have a "positive quality of life" for as much as 10 years, maybe more.

One of the lucky breaks is that my particular strain of cancer is known to respond well to the drug Temodar, which is taken orally, as capsules, instead of intravenously, in the hospital. That's a huge convenience, and if you can tolerate the days or occasionally weeks of nausea, lethargy, constipation, diarrhea and general "chemo brain" fogginess, its side effects aren't as bad as some other cancer treatments.

The down side is the cost, several thousand dollars a month. As reported in a front-page New York Times article last month, some health insurers classify Temodar and other oral chemotherapies differently than intravenous cancer treatments. The result, as the Times reported, is that many patients find their drugs aren't covered in their health plans, or are covered only partially, and find themselves bankrupted by their medicine bills.

It's a scenario right out of Obama's teleprompter: Here the problem isn't being uninsured, it's having insurance that doesn't meet the apparent definition of the word.

My own neuro-oncologist, Dr. Alex Spence at the University of Washington, says he has survived as long as he has in the health profession by making a point of not involving himself in questions of insurance or billing. But he says he's heard the same tales I have about Temodar patients who, denied pharmacy coverage, beat the system by checking into a hospital for their monthly dose. There, the dispensed medication is covered as a hospital cost.

"It's ridiculous," Spence tells me. "The insurance company ends up paying for the drug and paying for the hospitalization, which is even more expensive than the drug. It's just ridiculous."

In my case, my old employer-based health plan provided Temodar -- delivered it right to my door, in fact -- for a small monthly co-payment. Switching to an individual plan with a Seattle HMO jacked the price to $865 in December. Then in February I was told I already had exhausted my annual pharmacy benefit and now would be charged the full price of the drug, just shy of $3,000. Some benefit.

I thought about the cost. Michelle and I briefly considered selling our house. I privately contemplated a bankruptcy in my future, when the absence of employment, Social Security or my private disability insurance could make ongoing medical bills untenable. Maybe, I thought, I should just skip the last few months of chemo, against Spence's advice, and at who knows what cost to my health.

In the end I went back to the pharmacy and whipped out a credit card. The woman at the window, glancing at the bill, looked so shocked on my behalf, and I was so stricken myself, that I couldn't muster the will to repeat my old sick joke.

"Oh my God," she said. "Has anyone talked to you about the co-pay on this?"

"Yeah," I said. "It used to be about $900 but now I hear it's going up quite a bit."

"Oh my God," she repeated. "I'd need three jobs to pay for this."

Filed Under: Health Care

Tagged: cancer, health insurance, health insurance costs, health insurers, health reform, HealthInsurance, HealthInsuranceCosts, HealthInsurers, HealthReform

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