Re: Re: need help with BMS trials

[Guest guest]

At 02:25 PM 5/27/05 -0400, you wrote:

>Hi and Judy,

>

>Great idea. I know someone high up in BMS and will write him about this.

>I'll think about what else I can do as well. A letter blitz from everyone on

>all the CML lists (which are MUCH larger than they were before because we

>live so long now, and because we're such a gregarious group of " patients "

>;-)), along with their family and friend ought to do it. If we do this, we

>should aim to send all the letters in the same week.

>

>Cheers,

> R

Thanks for this idea .....and any connection at BMS you can discover

for us.

I think the idea of personal letters, written at an appropriate time, will

carry more weight this time around than simply signing a petition.

I am an OHSU patient and may move to another drug in the future, having

never obtained CCR, but it was not critical for me. I have just heard from

OHSU/Dr. Druker's nurse Carolyn that the phase 2 BMS trials will close

soon.......and that other trial are being 'worked' on, but we don't know

how long of a gap this will be for those who need a new drug now.....such

as the folks Judy O. was writing about. Also, there was definitely a

problem with the phase 2 chronic trial opening at some centers....both OHSU

and HH I believe never got trials off the ground. I wonder if the problem

was only with their " internal review board " or the equivalent.......or if

it was something about the way the trial was written up????

Also, the phase 2 patient criteria excluded some folks who need a new drug

to try.....here is an example of a friend who is an OHSU patient. She was

IM intolerant (liver problem).....and ended up with some blood counts that

labeled her as 'accelerated'......then she was able to get back on IM and

is now in chronic phase...........she did not meet the BMS trial criteria

for chronic because of this earlier period of being accelerated (I think it

was just higher basophils). And I guess there are others who have had the

same problems.

When and if it becomes time to write some personal letters to BMS,

championing our concerns....maybe a couple of the most talented writers, or

those with the compelling arguments can post what they will send......to

give others some ideas. But, in the end, I think that nothing will be more

impressive than heart-felt requests from those who are affected (whether it

is yourself, a CML friend of yours, your spouse, your child, etc) to get

BMS to do the 'right thing' and have this drug available to those who need

it before it is approved....in the same way that Novartis did for IM.

Looking forward to what you can find out .....and thanks for your help.

Maui Nanc