Battling cancer -- and Blue Cross

Unlike THE TYPICAL Blue Cross “valued member,” as the annual letter on rate and benefit changes always calls us, I wasn’t upset to learn that my monthly premium would increase by $50, to $395 a month, for me and my daughter.

That’s because I’m not really a Blue Cross valued member. I’m a Blue Cross problem member -- the kind who actually uses the valued benefits. So I don’t really care about premiums; I was just relieved that my yearly out-of-pocket cap, which jumped from $5,000 to $7,500 in 2004, didn’t go up yet another 50%.

Without me, Blue Cross’ parent company, WellPoint, which reported a $2.5-billion profit last year, could have seen a profit of $2.5 billion plus about $50,000. I was diagnosed with advanced, inoperable lung cancer in 2002 and so now typically reach my $2,500 individual deductible by January and my out-of-pocket cap by February.

By law, insurance companies aren’t allowed to adjust your monthly premiums just because you get sick. But they can raise the out-of-pocket cap for all of their members anytime they like, which amounts to the same thing because it affects only the unvalued sick members. (And, of course, getting sick means that even while one’s medical costs go up, the ability to pay goes down -- earnings potential is curbed when life becomes a series of treatment appointments.)

Lucky you, if you don’t know what your out-of-pocket cap is. And if you’re like every single healthy person I’ve queried, you probably don’t. But you should know, because the out-of-pocket cap is the most important part of your policy, meant to stave off financial disaster in case of catastrophic medical expenses.

The worried well, however, tend to be remarkably ignorant about medical insurance. Policy wonks keep arguing about market competition and consumer choice. But healthcare for the sick isn’t a market because choice disappears. You can’t shop around for generic drugs when you have cancer. Whatever chemical treatment the doctor suggests, it almost certainly will be a brand name costing several thousand dollars a month.

My out-of-pocket cap is $7,500, which means that after I reach $7,500 in co-payments, Blue Cross pays 100% of my medical expenses for the rest of that year -- except for the $30-per-brand-name prescription I have to pay the pharmacy after I reach my $500 annual deductible for drug coverage. According to the policy, it’s supposed to be a $30 co-payment for a month’s supply, but a new anti-nausea drug I was taking for weekly chemo costs $285 for just three pills, so Blue Cross made me go to the drugstore and fork over $30 every seven days.

Another thing working in insurance companies’ favor is that cancer patients rarely have the energy to argue about such nickel-and-diming. I recently managed to spend a morning forcing my way through multiple disconnects and transfers on the Blue Cross 800 number, but I was eventually told that the company would probably reimburse me for the extra $90 a month I was paying for that weekly anti-nausea drug if I filled out the right forms. My far bigger worry is that out-of-pocket cap, which is essentially what insurance is for. To drastically raise it seems the definition of bad faith.

Or so I thought -- until I began getting letters from Blue Cross in February announcing that it was retroactively disallowing the anti-cancer drug Avastin treatments it had been paying for since October, at $5,000 a pop every other week. It seems Blue Cross decided this new and expensive targeted therapy is experimental. (It looks as if Blue Cross is not asking to be repaid for my relatively unexperimental chemo, which had been costing about $2,500 every single week, but who knows?)

Avastin, which is officially approved only for treatment of colon cancer, is often as effective for lung cancer. So, insurance often pays for it -- especially when patients are, as they say at the oncologist’s office, running out of options. Therefore, I wasn’t surprised Blue Cross had put up no argument for months -- particularly when two CT scans since October showed that the Avastin/chemo combination had produced some tumor shrinkage and then stable disease. (It stopped working in March, so I’ve since moved on to a truly experimental therapy, which is free because the company that makes the drug pays.) I know Blue Cross is aware of the scans because it also sent a letter demanding more information about why the January one was necessary.

To decide after a therapy has proved beneficial that it’s merely “investigational” and therefore should not be covered -- that, actually, seems the definition of bad faith.

I should say that most claims since I became sick have been paid quickly, smoothly and at negotiated rates that I can see really do keep costs from skyrocketing into the stratosphere. The rack rate, so to speak, for my three-day stay at Cedars-Sinai was $32,000; Blue Cross only allowed the hospital to charge $5,000. My disability insurance (through Lloyd’s of London -- it insures the uninsurable, such as freelance writers who work at home) allows me to work part time, and I’ve gotten few arguments from claims adjusters about it.

In 2004, for instance, I was about a year into my relatively symptom-free period on Iressa -- a medicine that costs about $2,000 a month at the drugstore if you don’t have prescription drug benefits, in case you’ve been thinking such coverage is an optional frill. Lloyd’s made me visit an oncologist of its choice for a second opinion about whether lung cancer really prevented me from returning to work full time.

The insurer didn’t put up a fuss when the doctor said it certainly did, although it’s hard to see how it could have when he added: “It is remarkable that she has lived as long as she has, far exceeding the median life expectancy of her stage of non-small cell lung cancer.... the median response duration [for Iressa] is 8.9 months with the range of response being 4.6 to 18.6-plus months. However, those 18 months are extreme.”

When the Iressa stopped working after 20 months and I had to go back on chemo, I got another letter from Lloyd’s asking that I visit yet another oncologist to confirm I was still partly disabled. I told the claims adjuster that this seemed an unreasonable waste of my limited time and energy considering my situation had worsened. She agreed, and since then I’ve had no more bothersome review requests.

But that oncologist’s report clarifies what is the crux of my current problem with Blue Cross -- and the problem any health insurance company has with cancer patients who just don’t hurry up and die already. These new therapies may be great for humanity but not for WellPoint executives who don’t like the thought of a $2.5-billion annual profit reduced to, say, $2.499 billion.

I can contest Blue Cross’ decision -- the company helpfully included all the proper forms -- and I probably do have a good chance of changing its mind. My doctor decided to go ahead with the Avastin treatment before he knew insurance would pay for it, which says a lot for him as a doctor but also suggests that he’s rather shrewd. Perhaps he figured that, given my history, I had a good chance of responding to the treatment, and it would be hard for Blue Cross to reasonably argue (by the time it noticed the therapy was technically experimental) that it wouldn’t be effective after evidence showed otherwise. He also told me later that if Blue Cross won’t pay, Genentech, which makes Avastin, will resupply his practice at no cost with the Avastin I used, so I shouldn’t worry. But I still think Blue Cross should pay.

Now, at this point you may be thinking, as people often do when they hear frightening stories about medical calamities and try to imagine reasons it won’t happen to them: “Lung cancer ... hmm, well, people shouldn’t smoke.” And you’re right, they shouldn’t. That’s why I never did, not even one cigarette. Nor did I ever live or work with smokers. I also am one of the mere 3% of Americans who have always had completely healthy habits: exercising vigorously more than an hour each day, eating the recommended seven-plus servings of fruits and vegetables, never being overweight or drinking to excess. And I was prudent in picking my family, with its cancer-free history. Three of my grandparents lived into their 80s; the fourth died at 99.

So Blue Cross wasn’t taking much of a risk when it allowed me to buy one of its individual policies several years ago -- policies that are not always easy to get. Yet I still find myself in a predicament that is the insurer’s misfortune as well as my own.

“I’m everyone’s worst nightmare,” I told a friend when he called me in the hospital. “Cathy, you already were everyone’s worst nightmare,” he said. We laughed because he used to be my editor, and so certainly knew this is true.

What I didn’t realize at the time was that I’d turn out to be my insurance company’s worst nightmare -- the cancer patient who keeps responding to extremely expensive treatments. I only hope that Blue Cross doesn’t turn out to be mine.