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.

Blogger Stats Serendipity

When I make a posting I generally check my (unimpressive) stats. One of the things I look at is the "Referrers" listing. I have always expected that mostly family and friends read my blog (borne out by the high percentage of repeat visitors), but I always wonder how the uninitiated find me. If there's a search query listed, I can follow that link. Clicking on the search link gives me the same results. When the search results display I can see where my blog shows up, and what triggered its appearance in the results list.

The other day a search query was shown; I don't remember what it was exactly, but it was a fairly non-specific request including "pain" and "kidney". I know there were over 85 pages of Google responses to the query, because I skimmed through that many before I gave up, not having seen my blog's entry. I hope that the questor found something useful in all the search results retrieved ...

I just checked another search query from my referrals, this one for "how common is it to have eye cancer and renal cell". My posting "End Game" showed up, as well as this rather more useful abstract on PubMed.

The rather scary sentence in that abstract, "Newer systemic treatments available for renal tumors, such as interferon alfa, may lead to ocular side effects including retinopathy" gives one pause, doesn't it? These thoughts come to mind immediately:
1. I think I'd like to read the article in full
2. I'm glad Dr G keeps up with his research, because he certainly knows about it
3. I think I'd like to find a good way to keep up with research myself

I guess I was "righter" than I thought when posting earlier. The longer we take these new drugs, the more we learn.

Saint H is sleeping a lot and recovering nicely. What a relief!

The Staff of Life -- Or Is It??

A report published online in the International Journal of Cancer [October 10, 2006] has caused a flurry of blog activity on renal cell carcinoma. I quote the article abstract here:

"Although nutrition and diet have been related to renal cell carcinoma (RCC), the role of specific foods or nutrients on this cancer is still controversial. We evaluated the relation between a wide range of foods and the risk of RCC in an Italian case-control study including 767 patients (494 men and 273 women) younger than 79 years with incident, histologically confirmed RCC, and 1,534 controls (988 men and 546 women) admitted to the same hospitals as cases for a wide spectrum of acute, non-neoplastic conditions, not related to long term diet modifications. A validated and reproducible food frequency questionnaire, including 78 foods and beverages, plus a separate section on alcohol drinking, was used to assess patients' dietary habits 2 years before diagnosis or hospital admission. Multivariate odds ratios (OR) were obtained after allowance for energy intake and other major confounding factors. A significant direct trend in risk was found for bread (OR = 1.94 for the highest versus the lowest intake quintile), and a modest excess of risk was observed for pasta and rice (OR = 1.29), and milk and yoghurt (OR = 1.27). Poultry (OR = 0.74), processed meat (OR = 0.64) and vegetables (OR = 0.65) were inversely associated with RCC risk. No relation was found for coffee and tea, soups, eggs, red meat, fish, cheese, pulses, potatoes, fruits, desserts and sugars. The results of this study provide further indications on dietary correlates of RCC, and in particular indicate that a diet rich in refined cereals and poor in vegetables may have an unfavorable role on RCC. © 2006 Wiley-Liss, Inc."

This report was picked up in the national news, with headlines that "bread causes cancer". And it's now being hailed as proof that low-carb diets are the one true way to longevity and health. Isn't that going a little far, though?

The investigators seem pretty cautious in their conclusions. I agree that diet is a contributing factor in everyone's health, and this probably will lead to additional, more conclusive research studies. But given what isn't known about renal cell carcinoma, I'm reluctant to point to one thing amongst many and shout, "That's him, officer! He's the one!!!"

Easily-reached conclusions and sweeping statements make me pretty skeptical. Hmmmmm. Maybe I've gotten jaded due to 3 months of "talking point" political ads here in Battlefield Ohio. Ya think??

Lies, damned lies, and statistics - Part I

In a National Cancer Institute report dated 1998, kidney cancer accounted for approximately 28,000 of new cancer diagnoses per year. By 2003, that number had risen to approximately 32,000. Now, in 2006, the estimated number of kidney cancer diagnoses is 38,890. [You can find a dizzying array of statistics at the NCI SEER site] In 1998, kidney cancer was considered a "man's disease" with a 2:1 occurrence rate. Now, the incidence among women is rising, with estimated new cases for 2006 at a 1.73:1 ratio.

Is the incidence of kidney cancer really climbing, or are diagnostic techniques simply getting better? Are more women developing the disease, or is the medical community simply more aware of kidney cancer and more willing to consider it as a possible diagnosis? What can statistics really tell us?

Statistics, like the Bible, can be used to argue or justify nearly any position. An excellent review of the impact and meaning of statistics in a cancer diagnosis can be found at Steve Dunn's Cancerguide. Evolutionary biologist Stephen Jay Gould wrote a fabulous article on statistics, "The Median Isn't The Message", that both demystifies the statistical process and provides a stubborn message of hope.

Well, I'm stubborn, and I'm still here 3 years after the second diagnosis. I haven't bothered to look at the statistics on that yet. I'm too busy knitting to bother (finished a pair of socks yesterday; 4 pairs to go) ...