Greetings<\/p>\n
We are very pleased to let you know that CLL Advocates NZ is up and running again, reset and refreshed with new trustees and a sharp focus on our mission.\u00a0 After losing three of our five founding trustees it\u2019s taken us some time to rebuild, but we\u2019re pleased to introduce and welcome our three new trustees, Rob Crozier<\/strong>, Marc Pearce<\/strong> and Lisa Ryan<\/strong>, all New Zealanders living with CLL and with great skills to bring to our mission. Read about them here<\/strong><\/a> on our \u2018About us\u2019 page.<\/p>\n We\u2019re also very fortunate to have Amy Holmes<\/strong>, Consultant Haematologist at St George\u2019s Cancer Care Centre in Christchurch, as our Medical Director, in addition to the very valuable support of Ruth Spearing<\/strong>, a highly distinguished New Zealand haematologist and leading light in the world of clinical trials.<\/p>\n Our thanks for their contributions go to founding Trustee Dr Gillian Corbett<\/strong>, and Trustee Diane Ward<\/strong> who retired from their respective roles as Medical Adviser and Trustee last year.<\/p>\n Strategy workshop<\/strong><\/p>\n Our board met last month in Wellington in person and with two via video link.\u00a0 Discussions centred round the future direction of CLLANZ, maintaining our focus, strengthening our alliances, increasing the number of people we reach and what our immediate activities should be.<\/p>\n Our meeting included two very helpful in-person sessions:<\/p>\n Dr Rob Weinkove<\/strong>, one of NZ\u2019s leading CLL experts and a pioneer in CAR-T cell treatment, spoke on current and future CLL management in New Zealand and what we can do to help, and Todd Stephenson, ACT MP<\/strong>, who works closely with David Seymour on Pharmac, Medsafe and related health matters, updated us on ongoing Pharmac changes and opportunities to advocate for improvements in medicines access.<\/p>\n See a summary of Rob\u2019s talk here<\/strong><\/a><\/p>\n As a result of this latter discussion, we are preparing a submission in support of the Medicines Amendment Bill which proposes to speed up the process whereby Medsafe approves medicines for use in New Zealand if they have been approved by two recognised overseas jurisdictions. \u00a0 The bill would also enable more flexible approaches to the prescription and administration of medicines so that patients can get access to the medicines they need more efficiently. Submissions are due on 19 May.<\/p>\n \u00a0<\/strong>Clinical trials\u00a0<\/strong><\/p>\n Our page on clinical trials<\/strong><\/a> is now being updated regularly, most recently on 15 April, so keep an eye on these if this is of interest to you.<\/p>\n Participation<\/strong><\/p>\n Our organisation would benefit greatly from an influx of new people either by joining our Facebook page or by registering on our website. Although our Facebook group membership has doubled in the last two years (to 227) we are still only reaching about 10% of New Zealanders living with CLL. It\u2019s important for us to get more people involved, be they patients or caregivers, as that adds weight to our voice when we\u2019re lobbying for access to new treatments etc. Word of mouth is probably our most effective way of getting the message across. If you know of others with CLL please advise them of either or both of these options – our website and our CLL Facebook page<\/strong><\/a> and group<\/strong><\/a>.<\/p>\n Finally, we\u2019re in the process of refreshing and updating our website, so if you have any ideas on how we can make this more useful please do get in touch at: info@clladvocates.org.nz<\/strong><\/a><\/p>\n Till next time\u2026. Stay well.<\/p>\n Catherine Isaac<\/p>\n On behalf of the Trustees<\/p>\n CLL Advocates NZ<\/p>\n