When you add up the bill..

The latest issue of The Economist (May 26th, 2024) has an interesting article titled “The costly war on cancer“.  It is worth a read.  This article and an email I received from one of our members on the costs of participating in a clinical trial got me thinking about the costs of cancer diagnosis to the individual and society as a whole. Here are some cancer drug statistics that blew me away.

  • Herceptin, the breakthrough breast cancer drug that became available more than a decade ago made $6 billion dollars last year.  Gleevec (CML drug) raked in $4.3 billion.  Avastin out-performed the lot, making a cool $7.4 billion dollars last year.
  • What do we as patients get for these hefty price tags?  Compared to earlier therapy options, Provenge - a type of vaccine for fighting prostate cancer - increases average survival of patients by four months.  Cost of one course of Provenge is a mere $93,000.  Recently approved melanoma drug “Yervoy” costs $120,000 per course and FDA approval was based on the fact that it improved average overall life expectancy by 3 1/2 months.  Remember, these are averages.  There will always be outliers in any statistical set of data.  Some patients will live longer than that, others will die sooner.
  • Please click on the link to read the full article in “The Economist”.  There are a lot more eye-popping statistics.

What is the value of a few more months of life? Is it worth hundreds of thousands of dollars spent on a slim chance of success?  Each of us has to answer that question for our selves.  The rational part of me has one answer.  And I would be lying if I did not also admit I would have gladly given up everything I had, spent every last dime I owned, to have my husband with me for just a few more weeks.  And hope springs eternal.  Who knows, may be the next miracle drug will do the trick, may be it will be the real CURE we have all been waiting for?  Maybe my guy would luck out, maybe he would be the one to beat all the averages and medians, he would be the one to get the impossibly long remission?  People do win lotteries, don’t they?

The real costs of clinical trial participation

We have discussed this topic many times before and I will not belabor the points we have made already.  I want to focus on one particular cost of clinical trial participation that I was not aware of.

One of our members is participating in a new clinical trial, a combination of kinase inhibitor + Rituxan, at one of our most prestigious research institutions.  I won’t identify the member, the specific trial or the institution for obvious reasons:  our young lady does not want to rock the boat and piss off the researchers involved!  Her life may well depend on it. Here is what she had to say:

I have had many Rituxan infusions, so I know what that costs. Most recently I think that amount has been in the neighborhood of $6,000 per infusion for the Rituxan.  The clinical trial pays for the kinase inhibitor, since it is still experimental drug and not commercially available; but not for the second drug in the combination, namely Rituxan.

Guess what they are charging per infusion! $25,000 per infusion for Rituxan.  Actually, they are charging about $50,000 per infusion, but the insurance company has discounted it to around $25,000. That is per infusion so the 8 infusions required in the clinical trial are costing our insurance around $200,000. That is for the Rituxan alone.

Our local oncologist used to charge $500 for the extra two hours of chair time, because I need to get the Rituxan very slowly.  But when I get it at the research institution, the charge is  $5,000 for the extra two hours of chair time per infusion!  They have dozens of other charges to our insurance, too many to even count.  I am really worried because my insurance has a lifetime cap of a million dollars for me.  And the charges of this clinical trial are burning through that at an alarming rate.  I sure hope this clinical trial gives me a long remission!

You know what they say, beggars can’t be choosers.  I wonder how many patients are shell-shocked at all the hidden costs of clinical trial participation - but dare not speak about it.  After all, you would not want to be removed from the trial for non-cooperation, would you?

As for me, there was a time when I too worried about burning bridges with powerful researchers and drug companies.  Not any more.  My hostage is already dead.  What else can happen to me?

I am aware medical costs and how we as a society manage them is a topic that generates much heated debate in this country.  But please remember we are all blood-brothers and sisters here, no matter what our political affiliations.  So, debate away, but please keep it civil. Do me proud folks - you guys have been a real class act thus far.