We are still waiting to hear about the outcome of our appeal to oppose the delisting of Bendamustine and Ibrutinib from NCDF. The decision will be taken behind closed doors and will be informed close to the delisting date of 4 November.
Meanwhile we have written directly to Jeremy Hunt, Secretary of State for Health and are waiting for a response.
A very big thank you to everyone who has written to their MP. BUT WE REALLY NEED MORE OF YOU TO DO THIS.
Numbers so far are:
50 letters sent to 50 different MPs.
Responses are only just starting to trickle in and I will update you on this and the quality of the response over time.
Friends, carers, family members are also writing but are not updating me directly if they are not members of the CLLSA.
The most powerful message comes from the patient themselves, however all letters will increase awareness of our issues and should be welcomed and encouraged.
As a rule of thumb we need 150 letters to be sent to MPs by patients, out of which we would hope that around 50 will write to Jeremy Hunt as we have requested. However you may find that this will be dealt with by one of his Ministers who has responsibility for the CDF.
The timing of this Campaign is now critical as the meeting to be held to review the appeals will take place shortly.
SO PLEASE EVERYONE, SEND THOSE LETTERS TO YOUR MP AS SOON AS POSSIBLE - DON'T DELAY, IT COULD BE LIFE OR DEATH TO SOME RELAPSED PATIENTS.
Very best wishes