CLL Advocates August Newsletter<\/p>\n
Greetings<\/p>\n
Your Trustees have been active since we sent out our last newsletter.
\nCatherine Isaac, Chair, has resigned and we wish to pay tribute to her:<\/p>\n
Thank You, Catherine Isaac
\nWe extend our heartfelt thanks to\u00a0Catherine Isaac\u00a0for her dedicated service to CLL Advocates NZ since its inception. Catherine has recently retired from her role as Chair.
\nHer commitment, insight, and leadership have made a lasting impact on our work and the lives of those affected by CLL. From championing access to life-changing treatments to advocating for systemic change in the Pharmac model, Catherine has been a steadfast advocate and a source of wisdom and encouragement for the team.\u00a0Catherine\u2019s contributions have left a lasting legacy and we are grateful for the time and energy she has devoted to our cause.<\/p>\n
Thank you, Catherine, for everything you\u2019ve done.<\/p>\n
Trustees update<\/strong><\/p>\n Ruth Spearing (CLL Advocates Trustee) has been acting as de facto Chair and keeping us all busy!\u00a0 Ruth has now been elected as Chair.<\/p>\n Rob Crozier made a submission on the Medicines Amendment Bill in May, a copy of which is available on our website:\u00a0www.clladvocates.nz<\/a> Marc Pearce (Trustee) has taken on responsibility for keeping the\u00a0clinical trials information<\/a>\u00a0on our website and Facebook page accurate and has been researching comparative international data on the proportion of Budget: Health being spent on new medicines.<\/p>\n Lisa Ryan (Trustee) is taking responsibility for our website, alongside Melanie Murray, our valued administrator.<\/p>\n TRUSTEE\u2019S MEETING\u00a0 6 August<\/strong><\/p>\n Trustees met in an online meeting and began with a lengthy presentation from Matt Tyson, Janssen, reporting on the stalled approval process for Ibrutinib + Venetoclax for CLL. We had a long discussion about strategy for moving this forward and are now working on implementing that strategy. If you are currently self-funding this treatment or either of the drugs separately we\u2019d like to hear from you.<\/p>\n Trustee vacancy<\/strong> Declaration calling for urgent government action<\/strong><\/p>\n New Zealand\u2019s health system is in real trouble, and a group of passionate health organisations is asking Kiwis to help turn things around. <\/p>\n","protected":false},"excerpt":{"rendered":" CLL Advocates August Newsletter Greetings Your Trustees have been active since we sent out our last newsletter. Catherine Isaac, Chair, […]<\/p>\n","protected":false},"author":2,"featured_media":22524,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[17,21],"tags":[95,96,105,149],"class_list":["post-22523","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-newsletter","tag-ben-schrader-cll-advocates-chronic-lymphocyctic-leukaemia","tag-clinical-trials-cll-blood-cancer","tag-dr-malcolm-mulholland","tag-catherine-isaac-david-seymour-christopher-luxton-cll"],"jetpack_featured_media_url":"https:\/\/clladvocates.nz\/wp-content\/uploads\/2025\/08\/Thank-you.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/22523","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=22523"}],"version-history":[{"count":1,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/22523\/revisions"}],"predecessor-version":[{"id":22525,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/22523\/revisions\/22525"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/media\/22524"}],"wp:attachment":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=22523"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=22523"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=22523"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nRob was also present at the reading of the budget in Parliament at the invitation of Malcolm Mulholland (Patient Advocate Voice Aotearoa)<\/a>\u00a0and managed to make the case about the lack of funding for blood cancer medicines to Radio NZ. The media release has been posted on our\u00a0website<\/a>.
\nRob has also taken on the role of participating in monthly online meetings of the Pharmac Consumer Advisory Committee which is attended by the Pharmac CEO and senior executives. Pharmac has recently established a Patient Advocacy Network chaired by Malcolm Mulholland with Tim Edmonds, CEO of Leukaemia and Blood Cancer NZ as a member.
\nThe current key concern for us (and for haematologists) is getting Pharmac to approve the use of Venetoclax and Ibrutinib in combination. We are waiting for an update as to where it sits on the priority list. Tim Edmonds raised the need for a Modern Medicines Access Strategy \u2014 an idea that we should get behind.<\/p>\n
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\nTrustees decided to defer discussion re adding an additional Trustee to the next meeting \u2014 scheduled for 8 September. If you\u2019re reading this and feel you have something to offer watch this space…<\/p>\n
\n
\nThey\u2019re inviting everyone to sign a Declaration calling for urgent government action, and you can add your name at one of the 16 special events near you on Tuesday, 18 November 2025.
\nThe campaign is backed by Patient Voice Aotearoa, NZNO, RNZCGP, BHAG, Hauora Taiwhenua, and ASMS. Keen to help?
\nBelow is a flyer with information on the Wellington event.
\nFor the other 15 locations, please head\u00a0to\u00a0https:\/\/www.patientvoice.nz\/petition-locations<\/a> to learn more.<\/p>\n