Re: Pricing of Gleevec - and everyone

[Guest guest]

Hi and everyone else who wrote to me (off list)

I started to write this reply, then I hit a wrong button, and lost

it - grrr. I will try to recall what I was saying...

Oh, yes, how could I forget, I was going to say a word or two on the

price situation and BMS. As I already said, there was a significant

price increase here in Canada a few months ago, I think it was

probably during the summer, but I am not exactly sure. I am aware

that the price of Gleevec was increased in the states too. So, while

I am excited over the entrance of BMS into this market, I have to

say, that as a marketing person, this recent price increase of

Gleevec has me concerned. This might mean that Dasatinib can come

out on the market at the new arbitrarily inflated (as if the price of

Gleevec wasn't arbitrary enough, read the book magic cancer bullet,

the price was set based on Interferon pricing, not on other normal

things like manufacturing, research, etc.but I digress) price. Or,

much to our horror, it could even be just a bit more expensive, well

after all, it does something better than Gleevec (for those who are

intolerant/resistant).

That being said, I can tell you and others that and I met

with BMS a little while ago. They wanted to meet CML patients and

find out what our lives are like with CML. It was not only

a " moving " experience for us, it was also very moving for the BMS

Dasatinib team - there wasn't a dry eye in the room and there were

close to 15 people there. We tried very hard to convey what life is

like for us. We explained the stigma we feel sometimes because of

this disease and the high cost of the drug and the hardships many of

us go through to get the drug. Then of course, there are the side

effects. Everyone tells us to " suck it up " at least we are alive

right? However, these side effects make it very difficult to live

a " transparent " life with this disease on this drug. In the end

everyone in that room promised us that they were going to do whatever

they could to help us. We can only hope that they are successful.

, you asked me what you and others could do, well here is my

suggestion. All of us together should work as hard as we can to make

our voices be heard. We have to hope that BMS takes the initiative

to implement programs that do not require people to go begging to

charities and loose all their worldly possessions to access this life

saving drug. Each of us should do something, write a letter to your

congressman or the heads of the pharmaceutical companies in whatever

country you are in to bring a message to them and humanity about what

we must go through. " Marketing " dollars should be re-directed to our

doctors to improve PCR testing and directly help us, the patients, or

reinvested into research to find an affordable cure for this disease.

If somebody really wants to be a leader in this disease category,

then they should figure out what and how they can get this drug

better classified so that it is fully covered and accessible to

everyone. Increasing the drug price at this time is like adding

insult to injury.

I am so happy that you are doing so much better on Dasatinib and my

fingers are crossed that you will achieve a cytogenetic response. We

are all so grateful to you and the rest of the Dasatinib warriors.

Thank you for everything you do for us and I am looking forward

to following your journey.

Love and all good things,

Cheryl

>

> HI Cheryl-Anne,

>

> I am wondering if Novartis is starting to see the writing on the

wall. When

> Gleevec was approved, they had a monopoly.....it was this drug or

> interferon....yah, right!! Now, there are 2 new drugs on the

doorstep, with

> approval of BMS expected within 6 months or so. Also, we know they

read

> Jerry's diary and list .....and how many people are raving about

how much

> better they feel on BMS then they did on Gleevec. People will have

the

> option of switching drugs when BMS is approved, even just for

quality of

> life issues. Dr. Druker told me that he thought that most people on

800mg

> of Gleevec would feel better on BMS. He basically said that

theoretically

> BMS should have more side effects (well, to the blood anyway

because it is

> more potent)......but have less side effects over-all because the

dose is

> so much lower........so less drug in your system to cause side

effects.

> The improvements for me on BMS:

> no puffy eyelids in the AM, no watery eyes, no eye bleeds (yet);

> my vocal cord edema and raspy voice from Gleevec is clearing;

> I think I have less fatigue....it was hard to tell at first because

I was

> resting because I was so sore;

> the pills are a snap to take....with even just a small meal.....and

no

> stomach upset or acid reflux (a big problem for me on Gleevec, and

I was

> taking it twice a day);

>

> That's my 2-cents,

> We need to remember that as patients we are consumers and we have

buying

> power....at least we will when we have other drug choices!! Let us

know if

> there is some way that we can help you in any way with the 'things'

you

> take on for all of us.

>

> Best to you,

> C.

>