Monday, January 18, 2010


The title of this blog is a special number.........not only is it a big number (1 digit short of a phone number), the magic number does not refer to a boring government legislation, nor is it the mileage on my Honda Civic, nope- its not the combined weight of the starting defensive line of the New York Jets either.............3344.13 is my "lease on life".

That's right, for this very reasonable price you too can have 30 days worth of life saving drugs (side effects sold separately :P)

The sad truth is many CML patients are subjected to VERY high drug costs- and an alarming number of us aren't covered provincially or through private insurance- what is the fate of these patients? Should we wish them a quick and speedy recovery and go back to our designer pill popping? Is it safe to say the system isn't working when all patients in need aren't getting life saving meds!?!? Is it fair for drug companies to charge these amounts- I mean theses "magic bullets" spared most of us from bone marrow transplants and before these drugs came out I'd be writing a bucket list instead of a blog.

On one side of the equation we get to have a quasi normal life, on the flip side- we're expected to eat these pricey pills for the rest of our lives.....


How do you fund a chronic illness in a system that isn't designed to sustain gourmet pharmacy bills? The engineer in me is saying the square peg wont' fit in the round hole:

I'm asking these questions because I recently came across a story which I took rather personally. A young CML'er in the UK is being denied life saving drugs (Dasatinib/ Nilotinib) because the government is saying the cost of his drugs is too high.....that's a tough spot to be in- your life is on the line- your newly married and have your whole life ahead of you, you know there is a potential solution available- yet there is no way you can afford your medication............this could happen to anyone of us.

1 comment:

  1. Interesting comments indeed. Just a few trials showing some of the patient’s who have been helped with second generation TKI’s:
    Phase I Dose escalation trial. Dasatinib 84 (40 in CP, 11 in AP, 23 MBP, and 10 with LBP)
    Front line study: Dasatinib versus Imatinib 400 mg or 800 mg, This compared Dasatinib to historical controls of Imatinib. - 62 patients
    Dasatinib patients
    Both Dasatinib and Nilotinib show efficacy in treatment of CML after front line failure with Imatinib. 84 patients on Dasatinib, 119 on Nilotinib
    A dose optimization study There were 670 patients in this trial from various International centers
    Phase I Nilotinib trial = 119 patients
    Phase II Nilotinib Trial results – 42 patients
    A phase II study of nilotinib 120 BP and 41 ALL = 161 patients
    Nilotinib frontline – 73 patients
    These are not all of the trials. 1, 242 patients on these trials have been helped because of second generation TKI’s. That’s 1,242 people like you and me. We must continue to have the opportunity to access every treatment available. Otherwise, why are we bothering to develop these treatments?
    So, what is NICE really looking at? I do not know. But what if some patients can actually stop treatment after some time on these drugs?
    Look at the Mahon study: Mahon Study ASH Abstract:
    There is an Italian study of stopping Imatinib – only 4 patients but quite interesting.
    And the German study showed that 20 patients were given Imatinib/Peg IFN in combo and after roughly 2.4 years Imatinib was stopped and response was maintained with low dose Peg IFN.
    By my own calculation I have “purchased” through my private insurance, over $300K of drugs since being diagnosed in 2000. I would hate to think that that amount of money hasn’t even made a “dent” in my Leukemia. No one can afford to be friends and work with someone with this disease on designer drugs. They increase the cost of health care insurance premiums for everyone, either with the disease or not...
    My heart goes out to patients who have had a hard time to access and pay for their life saving/life extending drugs. My heart goes out to the patients who, in spite of having various options, have a disease that has defeated all that we have at this current time. We have much to learn. We've made great strides, but we can do better - we simply MUST do better!
    Here's to you kid! Love and Peace,