Tuesday, March 11, 2014

What Would You Pay For Your Life?

Medicine is expensive.
Healthcare is expensive.
Research is expensive.
Life is expensive.

Is it worth it?

I read an article (thanks to @BrendonStilesMD for tweeting it) which purports that crizotinib (aka Xalkori, aka my life-saving medicine) is not worth the expense. 

Yes, this is a very expensive medicine (about $10,000/month), and I am grateful to Pfizer's co-pay assistance program which lowered my co-pay from $1,600/month to $10/month. 

Perhaps what bothered me even more than the article were some of the comments, left by doctors:

"It would be justified if this drug really cures the patient and save a life. After all life cannot be measured in dollars. But it does not cure any cancer at all, merely delaying the inevitable end by a few months or (if the patient is very lucky), one or two years. What right have drug firms to charge such a huge price by pretending that a modest palliation is a cure?"
"One for the drug companies and a strike out for the patient."

How? I am not allowed to comment on the article itself (it is only open to medical professionals), but I would love to have a conversation with these posters. One big problem is that statistics are good at making predictions for populations, but they cannot determine what will work for an individual. I know many people who have lived one or two years on Xalkori (a few even three years) with a great quality of life. Yes, this is not a cure, but as my lovely doctor in Colorado said, the goal is to stick around for the next big breakthrough. There are other drugs in trials that give me the hope of tacking on another year or more as I wait for new scientific advances.

The other thing that this article forgets it that because I am on Xalkori, I am not on chemo. My medical bills during those months were many times higher (about $30,000/month). Chemo has the added side effect of depressing the immune system, leaving a person vulnerable to dangerous infections and costly hospitalizations. Thus, Xalkori is actually the cheaper path. Am I missing something?

Perhaps what they are really saying is that it is not worth the cost and effort to keep sick people alive. Which, I suppose, we could debate.


I think it is time to switch gears and take a look at what is possible.

Here is an inspirational, exciting, and funny speech by Dr. Camidge, head of the lung cancer research program at the University of Colorado. My faithful readers may recall that I just flew out to visit with this group. Their program certainly lived up to the hype.

Take a few minutes to watch this. In addition to my obvious personal investment in this sort of thing, I am intrigued by how similar this kind of thinking is to how artists approach their work. Dream big, reach for the impossible, ask "why not?"

Some highlights:
  • At 3:30, he talks about being a young scientist starting out. Some of the well-established institutions responded to his new ideas with “we don’t do it like that here.” When he visited the University of Colorado, they responded with, “we don’t know how to do that here … but we’d like to find out.”
  • At 4:15 he tells a story that gives me chills, about a drug called PF-02341066. This drug is now known by another name, crizotinib (brand name Xalkori). And it is keeping me alive.
  • At 7:55 he describes some out-of-the-box thinking, which his colleagues teased him about and called “pulling a Camidge.” This is now changing how cancer drug resistance is being treated.

He outlines the mantra that drives this cancer revolution.
  1. One size does not fit all.
  2. Don’t walk away from a good thing.
  3. If the cancer moves, follow it.
  4. Question everything.

Now THAT's more like it.

Along these lines, I am scheduled for a brain MRI on Friday (thanks to my consult in Colorado pushing to make this happen). Deeply hoping it proves unremarkable.


Lysa Buonanno said...

Xalkori has been saving my life for 9 months so far. When I started taking it I had 16 new tumors, now I have none.. my next drug is expected to get FDA spiritual in the next 2 months. There is no cure for lung cancer yet, in the mean time we have to rely on these drugs to get us "one more year". For those of us still raising our kids, "one more year" can mean everything.

Lysa Buonanno said...

FDA approval, sorry

Zuzana Tomas said...

Thinking of you and hoping for lots of unremarkable MRI findings to come.

Tori Tomalia said...

Lysa, unfortunately LDK378 doesn't appear to work very well for ROS1, though it is a potent 2nd-generation inhibitor for ALK. There are a few other ROS1 drugs in the pipeline (foretinib and potentially AP26113). Best of luck to you!

Tori Tomalia said...

Thank you, Zuzana!

Lisa said...

Tori - I will be thinking of you and your MRI on Friday. I go for one myself tomorrow.

Thanks for an interesting post. The title alone got me thinking - especially as I consider whether we can afford to switch to a PPO next year so I can see a thoracic oncologist rather than a general oncologist in my current HMO. The Xalkori co-pay alone $25 in my HMO vs. 10% (or $1500) on the PPO, could be a show stopper. But then again, what would I pay for my life??? Oy.

Tori Tomalia said...

Lisa, you MAY be able to get co-pay assistance from Pfizer, if you end up at the PPO. The people that run the program made it pretty painless, so it might be worth calling and asking their thoughts: 1 (855) 925-5674.

May both of our brains prove unremarkable!

Dann said...

I am on Tarceva, and initially I struggled with guilt that other insured people were subsidizing the roughly $120K per year that it costs to treat me. However, I've had 10 months on Tarceva, which has given me time to think.

The price of medications is set by the drug companies, and has almost nothing to do with the cost of production. You and I, and our insurance companies, and all the people paying for insurance, are subsidizing the cost of development.

There. My existential guilt has been lifted. Fair or not, we are paying for the time either 20 or 25 years after the drug is approved when it will become generic, and affordable to all. We are paying it forward.

In my view those health care professionals who say it isn't worth it are misguided. They should be looking to the FDA to limit drug costs, since any self-respecting drug company will charge whatever they think that the insurance companies will pay to save our lives.

I'll get off my soap box now. Have a terrific today. You deserve it.

Tori Tomalia said...

Interesting point, Dann. I hope the prices will eventually drop for these meds, and we know competitor drugs are already in trials. The competition may effect pricing too. I like your thinking, that we are "paying it forward," as are all the people who enter clinical trials.

Best of luck, and may Tarceva continue to work for you for a long time.

wearetribal said...

Read the same article. Apparently my mom is THE outlier on Xalkori, two years on it and no sign of cancer at this point, no tumors, no signs in her blood work that she had cancer. She had eleven tumors. If they can figure out why she is doing so well it may help others. IN any case, one patient cured is sure worth it to me.

Tori Tomalia said...

That is fantastic about your mom! I hope she keeps going strong for a long, long time. There is a group of people over on inspire.com that have been on Xalkori for a long time (I think some even as long as your mom) who are also doing really well. It is a pretty amazing drug.