Australia's November Pharmaceutical Benefits Advisory Committe (PBAC) meeting will consider listing Idelalisib and Ibrutinib for CLL patients.
Idelalisib is on the agenda for a major submission to list it for the treatment of CLL in patients with progressive disease despite previous treatment.
Ibrutinib's second listing attempt is for relapsed or refractory CLL and SLL. No doubt the sponsor will address what it can of the points raised in the previous PBAC meeting, but actual patient experiences - possibly from you! bear considerable weight.
The agenda can be found here, as can the link to the Consumer Comments Submission form:
The deadline for these consumer comments is next Wednesday, 7th October 2015
All CLL patients are encouraged to respond, with the PBAC particularly interested in hearing from CLL patients that have had experience of Ibrutinib or Idelalisib. So particularly if you've had treatment with either of these, please provide the PBAC with your experiences (and compare them with your earlier treatments!!)
Consumer Comments Submission form:
Filling this in is very easy; it's a well guided process. Please concentrate on the advantages of the new drugs compared to your earlier treatments, e.g. they'll work when you have bad deletions and when your response to further chemo treatments is diminished from previous treatments, they have less/less severe side effects, you feel more well and are actually able to do more if that's been your experience, etc.
Thanks on the behalf of all Australians with CLL looking to gain affordable access to non-chemo treatments, particularly when they are running out of options.