The Scottish Medicines Consortium (SMC) which, like NICE in England, assesses the clinical and cost effectiveness of drugs for use in the NHS in Scotland contacted CML Support last week to invite us to participate in an assessment of dasatinib (Sprycel®) as a first treatment for adults newly diagnosed with CML in chronic phase (CP).
The SMC also wants to assess dasatinib treatment for adults in any of the three phases of CML who have exhibited either resistance or intolerance to a previous treatment which more often than not would be with imatinib (Glivec).
The procedures for us registering to enter the process and the submission form we are required to complete have recently been changed. What has not changed however is the role of patient groups as the interface for patients experience of CML and treatments they receive following diagnosis.
We have now completed the registration process and would like to ask if any Forum members are willing to assist us with their accounts of their personal experience of dasatinib, either as a first or subsequent line of treatment.
For obvious reasons we would particularly like to hear from patients in Scotland, but we also welcome contributions from patients elsewhere in the UK. The deadline for our submission is June 6th so would like to receive contributions by May 20th to allow us time to collate them into a coherent set of responses.
If you would prefer not to get in touch via this Forum please email directly to cmlsupportgroup@gmail.com
The part of the revised submission form we would like your assistance in completing consists of five questions plus a summary statement which is an improvement on the previous submission form.
The questions, as paraphrased and personalised below, are:
1. How does having CML affect your day to day life?
2. How well are you able to manage your CML with the NHS treatment you currently receive?
3. Has treatment with dasatinib improved your quality of life and experience of care?
4. What impact has receiving dasatinib treatment had on your family members and/or those close to you?
5. Do you think there are any disadvantages to your being treated with dasatinib?
Finally, what are the key points you would like to highlight about your treatment with dasatinib.
Thanks for your help,
David