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Urgent request- Appraisal of dasatinib and nilotinib by Peninsula Health Technology Commissioning Group

If at all possible in the short time we have to give an view of the experiences of imatinib resistant/intolerant CML patients who are in need of the 2nd gen drugs I would be grateful for your urgent feedback.

I have just under 12 hours to send your feedback to the Peninsula Health Technology Commissioning Group who are meeting tomorrow to review the situation for patients living within areas covered by Devon PCT

If those of you who are currently need access or are being treated with either 2nd generation drug would write a brief submission of your needs, experiences and responses and send them to me at
cmlsupportgroup@gmail.com
I will do my best to collate the submissions and send them on by this evening to arrive in time for tomorrows meeting.

It does not matter if you do not live within the Devon pct region.
The submission can also be used for our input to the upcoming NICE appraisal.

All submissions must be anonymous and I guarantee that names contact details will not be shared.

for guidance please take a look at the following.

Thanks a lot,

Sandy

1.4 Currently available medicines

From a patient/carer perspective, please outline your experiences in respect of medicines currently available, including perceived advantages and disadvantages, preferences and needs both met and currently unmet.

Provide us with any information that you feel will help the Peninsula Health Technology Commissioning Group understand how this health problem affects patients/carers.

Section 2 – Product Specific Details

2.1 Potential Impact

If this new medicine were to be made available how would it match up to your needs and preferences; what would be its advantages and disadvantages over currently available medicines: and how might it impact upon the lives of patients and carers?

I would like to thank Ali Lorem who answered my request at very short notice and sent me an outline of her experiences since diagnosis with TKI therapies.
I spent some hours late last night writing the submission and managed to get something relevant and coherent together in time for the Peninsular Health Technology Commissioning Group meeting this morning.

I have had limited feedback that welcomed the submission as 'very enlightening' and 'hopefully, useful'

I really hope Devon PCT is able to agree to reimburse dasatinib and nilotinib for imatinib resistant/intolerant patients.

I will update you when I know the results of this meeting.
Sandy