I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of Ibrutinib on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options. You need not have had treatment already to participate. I was then contacted and asked if I knew of others interested in participating in an online survey and I am consequently forwarding the contact of the Production Manager in case any others on our community are interested in taking part and sharing their experience of Cll.
I think it's great news that at least some steps are underway in listing this kind of treatment on pbs and giving people a choice possibly outside FCR.
Anyone interested please contact:
Tel: +61(0)2 9855 7988 - Fax: +61(0)2 9855 7980
Stay well best wishes to all!