Renal Cell Live!

Saturday, December 13, 2008

Lifetime Supply

Friend and sister C2 and I have kidded each other for years: She'll take my lifetime supply of coconut if I'll take her lifetime supply of lima beans. Or I'll take her share of pears for my share of red wine. All in good fun, of course. But what if it isn't?

The British National Health Service has attempted to come to grips with drug costs for treatment of chronic disease as well as catastrophic illness with a payment formula. NICE [National Institute for Health and Clinical Excellence, a government agency] establishes a protocol for maximum payouts. As outlined in this article, the outcome can be dismaying. The process is illustrated by Bruce Hardy, a kidney cancer patient whose disease has progressed alarmingly since he was refused coverage for Sutent based on projected costs under the formula. The reasoning behind the decision: Sutent and similar drugs extend life only by an average of six months, according to the NICE deliberations, and the drug costs are extravagant based on these results: "But at that price [$54,000], Mr. Hardy's life is not worth prolonging ..."

I guess I don't know how to respond to the question, what is a life worth? What cost is "justified"? Since August 2005 I've received treatments totalling over $75,000 in insurance benefits for Sutent and Nexavar alone, disregarding other attendant drugs and prescriptions that I've taken to ease and control side effects of the medications or the disease. And my needs have been relatively modest compared to those who must take the full dose of Nexavar; had I been prescribed the full dose for the past 3 years, those insurance benefits would have skyrocketed to nearly $250,000, again just for Sutent and Nexavar.

Can we truly say that these drugs are effective "only" for six months on average? The drugs are fairly new, their effectiveness (less and less likely to be questioned) is still being tested, and happily the end stage results for their use keeps being pushed further and further out on the timeframe. Biologics are expensive, and no doubt there could be ways to reduce their costs. We seem to operate under a "whatever the market will bear" mentality and that free-wheeling free-market approach may well be inappropriate when people's lives are at stake. If one's life is extended and one is reasonably self-sufficient because of the medications, as I am, is the cost "worth" it?

I don't dispute that extraordinary measures are extravagances when applied to someone whose prognosis is poor and likely to remain so. I certainly don't expect extraordinary measures to be taken for me when the time comes; quality of life is uppermost in my mind, and I don't want to linger, insensate, when my disease progresses faster than any drug can control it. But I can't help thinking about Mr. Hardy: I was in his position in August 2005, I was given Sutent and Nexavar, and I've benefitted greatly from it. What kind of shape would he be in now, had he had the same chance? One positive note: given public outcry, there have been some modifications proposed to the NICE standard, so it's not written in stone - yet.

Who will decide what's best: Bean-counters? Physicians? Patients? This is a lifetime supply of conundrum that I'll gladly trade for something else. I don't think I'll get any takers, though.

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1 Comments:

  • Which is why the Aussie govt refuses to admit immigrants with long term illness. I almost got refused; had they known what I was going to get after I was a citizen

    By Blogger Swanknitter, at 4:43 PM  

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