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Dasatinib/NICE - we are not working alone

From my partner, Alan, CML'er taking Dasatinib:

I've come to this NICE debate a few days late, having received an email from a friend working for a Public Relations firm that has been asked to look for information in the news about Dasatinib, after the NICE report:

"Would you be able to keep eyes peeled for some additional coverage when you do the daily monitoring:
- Chronic myeloid leukaemia (CML)
- Dasatinib (brand name Sprycel).
In their preliminary approval process, NICE have given a ‘not recommended’ to Sprycel (manufactured by BMS) for the treatment of CML. This leaves patients who are resistant to current standard chemotherapy, with limited options for treatment. If you spot anything relating to this story over the next few weeks, let me know."

Obviously BMS are fighting to get their drug authorised as well, and require ammunition which we might be able to supply.

P.S. Perhaps emails could be sent to all CML'ers once Sandy has more information about how to get our letters read by the right people.
I don't visit this site regularly so I only heard about this via my friend.

I welcome any surport that BMS can offer,yes they have a vested interest,but so do I Dasatanib keep me alive.
BSM I would think have more information on their own drug than any other party,and at the end of the day BSM might have to throw something into the pot,say 3/6 months free drugs to anyone glivec resistent.And if more trials need to be done to show Dasatanib is effective BSM might have to fund indepedent testers.
I for one accept the efforts that this forum makes and is a lifeline for many, but when it comes to life and death I will persue any avenue.

I understand your view Michael. However, industry are bound by rules regarding talking directly to patients/groups who benefit by their products. They are bound (at least in the UK) by strict ABPI rules (Association of British Pharmaceutical Industry) outlining exactly what they can and can't do regarding interaction with the public.

Also you must understand that we as a Charity and a disease specific patient group, are always open to accusations of complicity with industry and must be very careful in the actions we take.

All the information we will use in this matter is already in the public domain and is freely available.

Sandy