Dear Friends,

I hope you’re well.

Learn the latest international developments in CLL treatments
One of the few positives that have come out of the Covid pandemic is the ability to attend high value international conferences without having to travel or pay! The international CLL Advocates Network (CLLAN) of which we are a member is holding its annual CLL Horizons Conference online on 5 – 7 November.

This will be a great multidimensional update on CLL, with contributions from leading international CLL specialists and researchers, patients and many other individuals and groups. I strongly recommend that you register for this year’s one.  I attended and presented at their Edinburgh conference in 2019 and am also on a panel on this one.  We’re not sure yet how many delegates we can have attend free of charge, but will clarify this and let you know.

Details of the programme and how to register, are all here on our website, and you can send any questions to info@clladvocates.net

Contribute to a global leukaemia patient experience Survey
Another collaborative project CLLAN is supporting is a global survey to help us understand the key issues, experiences and unmet needs for leukaemia patients, covering CLL, AML, ALL and CML.   This is a very valuable initiative and I warmly encourage you to take the 20 minutes required to complete it.
You can find more details about it here on our website and you can access the survey here.

Meanwhile, where is the Pharmac Review Panel’s interim report??
On a final, but important note, the preliminary report of the Independent Pharmac Review Panel which was due on 20 August, is still not available over a month later.  The “delay” has been attributed to lockdown (which began on August 18). This is not an adequate excuse for such an important document, which many clinicians and patient advocacy groups, including CLLANZ, went to great lengths and effort to contribute to, both in appearing before the committee and putting in very substantial submissions.  For voluntary, patient-based organisations to produce and deliver this material within the very short time frame set by the Panel, was in itself a significant effort.

Somewhat ironically, Pharmac’s lack of transparency and timeliness around their processes for considering urgently needed, currently unfunded, life-saving medications, was one of the key issues raised by submitters.  Failure on the part of the panel to deliver its report on time without a reasonable excuse is simply not good enough.

Best wishes
Neil Graham

Neil Graham