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Case of Bad Conscience About Expensive Biologics
from Sadie F.

Dear Ed: I'm waiting to hear if my insurance company will pay for Humira. My dermatologist's office is handling the request. I don't even know what co-pay will be involved, but after so many years on pills that I already thought were too expensive, I can't wrap my mind around the possibility of spending -- well, using insurance to spend -- $12 to $13,000 per year for one prescription. Too bad there aren't any guidelines to "what's reasonable to spend" or "what expenditure makes sense" in terms of symptoms and other aspects of a disease like psoriasis. I know pain and suffering are pretty subjective. I guess I'm looking for a kind of King Solomon ethic to ease my conscience.

I don't have severe psoriasis. My dermatologist calls me "moderate," not because of percentage of coverage, because my few lesions are very obvious: ankles, knees, elbows and forehead. The largest plaque, on one of my knees, is a little smaller than the palm of my hand; the rest vary from nickel size to fifty cent-piece size. Like lots of folks with psoriasis, my lesions come and go. I figure I'm showing at least some of them off about 8 or 9 months out of 12. I like to wear stylish clothes, which includes some shortish dresses, sleeveless tops, capri pants, other things that expose some skin. Inevitably, the plaques will show.

But am I sick? Not in any debilitating sort of way. Am I disabled? Not according to my doctors. Am I psychologically stressed? No more than any other forty-something American woman. Also, I don't have
psoriatic arthritis (at least not yet), none of my fingernails or toenails have shown symptoms, and neither the disease nor its pill-type medicines have caused me to lose my hair. (Like you, I've used both
methotrexate and cyclosporine. Reading your journals about some of the biologics is what convinced me to try Humira.)

So, does all this add up to a need to spend up to $13,000 per year on one prescription (assuming it works in the first place)?

To save you some time, here are some of the excuses I've already heard from friends:

  • "You say you're not stressed, Sadie, but you are. You want your lesions to be gone. You don't want to see people staring at your lesions. Spending $60, $100, $160 per month on doctors, goops and pills didn't get your skin consistently clear. So maybe it's going to cost $13,000 to actually get dependably free of lesions for the long haul. So maybe that's what insurance is for. That's what other people with psoriasis are doing. Why shouldn't you feel good about doing it, too?"
     

  • "If the insurance companies thought paying the cost was just wrong, why would they approve it for so many people with psoriasis?"
     

  • "People with truly terminal illnesses spend lot's more to buy hope and maybe a few more months to live. People who don't have any money get emergency services that can run into hundreds of thousands of dollars if they're badly hurt. You should feel bad, maybe, about treating your psoriasis through expensive meds if you suddenly end up terminal or broke and must go on the dole to continue. But don't feel bad until then."

That's what I've heard Ed. Now please tell me what you think.

-Sadie F.

*****

Ed's Response: I think that if the world were full of people like you, Sadie, it would be a far better place.

The fact that I've been on biologics for nearly 10 years and on Humira for five of those means, at least, that I'm living with whatever bad conscience I might have. Or perhaps I never had a bad conscience about the expensive biologics because (a) my skin psoriasis was literally severe and (b) my psoriatic arthritis was literally debilitating. I guess, given those issues, I could say my $26,000 annual insurance expenditure for Humira (double the normal dose) is warranted because it keeps me functioning and productive. It really wouldn't take an exercise in King Solomon ethics to determine my psoriasis warranted an expensive fix.

But after years of hearing from all kinds of people with psoriasis, I'm inclined to say King Solomon ethics will never work for determining what "psoriatic state" warrants "which amount of expenditure."

Years ago I heard about a young man who was a professional musician and became housebound when he was told his psoriasis was frightening people. His career was in jeopardy. Can a price tag be placed on the worth of a treatment in cases like his?

Given that each case is unique and we can't objectively lay out an ethic that relates a dollar value to some abstract degree of suffering, let's think about insurance for a moment. Health insurance works because a lot more people are worried about needing it than actually use it. Everything about our American lifestyle contributes to the profitability of insurance in our society. For most of us, it starts when someone else insures us, usually a parent, sometimes a government. Then we insure ourselves -- often not until some health calamity makes the need for insurance all too apparent. Then we find ourselves insuring others; we pay premiums to cover other members of our family, or we pay taxes to cover the public fund that attempts to insure health care for those who can't afford it. In other words, if we're working Americans, we've spent years and decades "buying insurance." Doing so provides jobs for an army of people who process our premiums and claims. Are the payouts fair? Not necessarily. They're regulated by promise and policy and law; perhaps in a capitalist democracy that's the best we can expect.

The science of health insurance in America is the science of monetary probabilities (I'm sure it has a slicker name). Decades of calculations inform those who need to know about the necessary cost of insurance to the buyer so the providers can pay likely claims as well as their operating costs and be left with a profit. Again, the abiding logic is "the many pay so the few can be covered." But also remember the insurance companies are financial institutions. I don't know -- I doubt many people DO know -- to what degree the total cost of claims is met by the total income from premiums. I'm sure some portion of our premium money is invested by the insurance companies and what they earn that way may, in a perfect world, help keep our premiums affordable.

I can't complain. In 2007, expensive tests revealed I had a bad heart valve and four clogged heart-feeding blood vessels. I was hospitalized for a week for a valve replacement and quadruple bypass. After about three months on "light duty" I went through 16 weeks of cardiac rehab. Not only did I never see the final bills, though I'm sure they amounted to hundreds of thousands of dollars, I never paid a cent out of pocket. Nada. Zero. At the time I was employed by a small business that had 6 people on the payroll and paid 100% of their health insurance premiums (about $680 per month per employee). That same insurance company also paid my Humira bills -- that $26,000 cost I mentioned earlier for twice the normal dose.

Something bad is going to happen in the next few decades that may make experiences like mine in 2007 a part of fond history. What's going to happen, as we're all being told through mass media these days, is the aging and retirement of a huge chunk of our population. The ratio of working people to retired people is going to shift, at least for awhile, and the retired people on fixed incomes are going to put heavier than ever loads on Medicare and private insurance companies. Some doubt the insurance industry as we know it will be "sustainable." I'm not so pessimistic. As their premiums-to-claims ratios shift detrimentally, brilliant financial antidotes are sure to emerge within the insurance industry. Some we'll like; some we'll never hear about; some we'll hate.

I'm thinking the high cost of biologics may come under the gun sooner or later. In the not too distant future we'll see the indefinite exclusivity enjoyed by biologic manufacturers -- preventing competition from making generic versions -- hopefully go away, though it may be awhile before anybody, most certainly generic drug manufacturers, can gear up to produce these expensive drugs. I suspect when the battle for significant price reduction really heats up, the insurance companies will be well represented on the side of reducing those costs.

As a final thought, Sadie, I'd like to add that a large portion of flakers who have found relief through biologic drugs are also more productive than they were before. That means they're healthier, happier
contributors to our social well-being. It's not all about "self." It really never HAS been. So, I hope you overcome your twanging conscience and move forward with the Humira. I also hope it clears you and that your insurance company will continue to pay the bills for as long as you use the drug.

Good luck and best wishes! -Ed

*****

Ed's Drug Journals:

Ed's Soriatane Experience
On Raptiva
Me, My Enbrel, My Cancer
Dewke Cyclosporine Diary
Dewke Methotrexate Journal: 1st 12 Weeks
regarding methotrexate, you may also be interested in: My Liver Biopsy

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