Re: Sharon, Skip, and Matt (Barb)

March 9, 2009

Thank You Barb

It will be interesting on your report...

SkipD

From: Barb Stanley <barbarastanley@...>

Subject: [ ] Sharon, Skip, and Matt

Date: Sunday, March 8, 2009, 11:32 PM

I really think that the patient advocacy coordinator at my oncologist office

sent this to me. I think that the Novartis rep probably said mail this to who

you think would be good for this kind of thing. I was their first Tasigna

patient in January of 2007. She has saved me all the BLOOD magazines that

contain the blood cancer information. She also knows I am connected with many

online support groups.

The folder says it is a Patient Advisory Board for patients on a second line

treatment for a Philidelphia Chromosome Positive CML. The meeting is supposed to

do the following:

1. Exchange experiences on living and managing PH+ CML

2. Discuss the past and current treatments

3. Share insights on practical management approaches

4. Identify unmet educational needs of PH+ CML patients

5. Advise Novartus on the development of meaningful patient education and

support programs.

That is a handful eh?

I must be approved with the consent form and then they will contact me. I mailed

it in today.

Meanwhile, I am collecting all sorts of questions for them.

Some are:

1. What is being developed in case tasigna fails?

2. What can you do about contacting the state insurance comissions informing

them of drug and testing protocol so they don't deny testing procedures?

3. Where do we find out what QT prolongation is and how can they explain it to

us in laymen's terms?

4. I would love easy-to-understand data on the trials prior to our going on it.

The Blood Magazine is incredibly difficult for those without chemestry to

understand.

5. I think the way they work or don't work with insurances would be important.

I have copied and kept every post from you all so I can effectively remember and

represent as many as possible on this endeavor.

Thanks for all your feedback.

My blessings and all good things.

Barb

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