{"id":1948,"date":"2020-06-22T11:17:46","date_gmt":"2020-06-21T22:17:46","guid":{"rendered":"https:\/\/clladvocates.nz\/?p=1948"},"modified":"2020-06-22T11:17:46","modified_gmt":"2020-06-21T22:17:46","slug":"cll-advocates-nz-newsletter-issue-1","status":"publish","type":"post","link":"https:\/\/clladvocates.nz\/?p=1948","title":{"rendered":"CLL Advocates NZ Newsletter Issue 1"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;2&#8243; top_padding=&#8221;3&#8243; bottom_padding=&#8221;3&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243;][vc_column column_width_percent=&#8221;100&#8243; gutter_size=&#8221;3&#8243; overlay_alpha=&#8221;50&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h1&#8243; text_size=&#8221;h1&#8243;]<\/p>\n<h1 class=\"title\">CLL Advocates NZ Newsletter Issue 1<\/h1>\n<p>[\/vc_custom_heading][vc_column_text]Welcome to our first CLL Advocates newsletter. Like many organisations, we weren\u2019t able to accomplish very much over the lockdown period. We did, however, manage a Trustees\u2019 teleconference to shape up our strategy for the next 12 months. One of the proposals made at that meeting was a monthly newsletter, so here is the first edition.<\/p>\n<p>A huge number of lay and medical articles have been written about the COVID pandemic, and, as you may have seen on our website, we\u2019ve published a number relevant to people living with CLL. See them <a href=\"https:\/\/clladvocates.nz\/news-events\/covid-19\/\">here<\/a>. One of particular interest was a consensus statement by Australasian haematologists on management of blood cancers in the COVID pandemic (published in May\u2019s Internal Medicine Journal). \u00a0It noted that, with a mean age of diagnosis of about 70 years, CLL patients are already likely to be in a high-risk group simply because of age. Advice specifically directed to CLL patients was:<\/p>\n<ul>\n<li>to delay planned therapy where possible<\/li>\n<li>to consider using oral agents over IV medications so as to avoid exposure to higher risk environments such as hospital chemotherapy units, for treatment of both initial therapy, and for relapsed\/refractory disease (see our recent <a href=\"https:\/\/clladvocates.nz\/news-media\/cllanz-calls-for-home-based-treatment-for-cll-patients-during-covid-pandemic\/\">letter to Pharmac<\/a> on this matter).<\/li>\n<\/ul>\n<p>New Zealand has done extraordinarily well at this stage to contain the virus, though it should be noted that vaccination, if successfully developed, may\u00a0present further challenges for CLL patients.<\/p>\n<p>The CLLANZ Trustees\u2019 meeting agreed that information\/education initiatives on CLL should be high on our priority list. In this regard, <a href=\"https:\/\/clladvocates.nz\/news-media\/a-current-overview-of-medications-in-the-treatment-of-cll-in-new-zealand\/\">a review<\/a> of the current management of CLL by Dr Gillian Corbett, haematologist and trustee, has been published on our website. A detailed CLL patient information booklet is also now close to sign-off and will be published shortly.<\/p>\n<p>In October this year we will be staging a half day or evening combined meeting\/seminar on CLL in NZ with the Leukaemia &amp; Blood Cancer (LBC) group, with leading NZ CLL specialists. \u00a0This will be \u2018in person\u2019 in Auckland and also online on Zoom so that people from around the country can join in the discussion and if desired put questions to the speakers. \u00a0Details will follow soon.<\/p>\n<p>To ensure we reach as many people as possible who have an interest in CLL, we encourage you to become a \u2018friend\u2019 of CLL Advocates NZ \u2013 by signing up to our newsletter <a href=\"https:\/\/clladvocates.nz\/get-involved\/become-a-friend-of-cllanz\/\">here<\/a> and\/or joining our private Facebook group. You can apply to join the group <a href=\"https:\/\/facebook.com\/groups\/cllanz\">here<\/a>.<\/p>\n<p>More details of anticipated activities will follow in subsequent newsletters.<\/p>\n<p>Meanwhile, now that we have passed the winter solstice, and are becoming adjusted to the new \u2018normal\u2019, stay well, physically, mentally and spiritually. And please remember that as well as our advocacy role, we want to be a source of knowledge and support for New Zealanders living with CLL, and their families and supporters. To help us achieve this we would welcome and appreciate your feedback, and your thoughts on how we can best achieve our mission.<\/p>\n<p>With best wishes<\/p>\n<p>Neil Graham FRACP, FRCP<br \/>\nExecutive Director<br \/>\nCLL Advocates NZ[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Welcome to our first CLL Advocates newsletter. 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