{"id":16777,"date":"2021-05-01T11:17:36","date_gmt":"2021-04-30T22:17:36","guid":{"rendered":"https:\/\/clladvocates.nz\/?p=16777"},"modified":"2021-05-01T11:17:36","modified_gmt":"2021-04-30T22:17:36","slug":"cll-advocates-newsletter-issue-10","status":"publish","type":"post","link":"https:\/\/clladvocates.nz\/?p=16777","title":{"rendered":"CLL Advocates Newsletter Issue 10"},"content":{"rendered":"

[vc_row row_height_percent=”0″ override_padding=”yes” h_padding=”2″ top_padding=”3″ bottom_padding=”3″ overlay_alpha=”50″ gutter_size=”3″ column_width_percent=”100″ shift_y=”0″ z_index=”0″][vc_column column_width_percent=”100″ gutter_size=”3″ overlay_alpha=”50″ shift_x=”0″ shift_y=”0″ shift_y_down=”0″ z_index=”0″ medium_width=”0″ mobile_width=”0″ width=”1\/1″][vc_custom_heading heading_semantic=”h1″ text_size=”h1″]CLL Advocates Newsletter Issue 10<\/b>[\/vc_custom_heading][vc_column_text]Dear Friends of CLLANZ<\/p>\n

It was very interesting to learn in the news this week of Pharmac\u2019s \u2018wish list\u2019 of 73 medicines it would like to pay for, if it had the budget to do so.\u00a0 It\u2019s the first time Pharmac has released figures for what it calls its \u2018options for investment\u2019 list. The cost of funding them would be $417,670,000.00. Newshub got the story from an Official Information Act request \u2013 see it\u00a0here<\/a>, and see Pharmac\u2019s formal response\u00a0here<\/a>.<\/p>\n

The wish list is separated into proposals (118) and medicines (73), (as some medicines treat several illnesses) and it comes with a breakdown of how long they\u2019ve been waiting.\u00a0 Although the list hasn\u2019t been released, we expect Ibrutinib to be on it, as one of the 14 (of the total of 73) that have been waiting the longest, i.e. for 6+ years.<\/p>\n

The timing of this is interesting, coming as it does in the lead-up to the Budget (May 20), and with Health Minister Andrew Little confirming to Newshub that any additional funding for Pharmac comes down to a political decision. That reality is also reflected in the government\u2019s decision to exclude funding from the \u2018independent\u2019 review of Pharmac that is currently underway.<\/p>\n

Filling the budget hole to fund the 73 \u2018wish list\u2019 medicines would mean a 40% increase in Pharmac\u2019s funding, an increase that would go some way to bringing us into to line with Australia, the UK, Canada, etc. \u00a0We don\u2019t know what Pharmac\u2019s bid has been for this year\u2019s Budget, but last year they didn\u2019t ask for any more money at all!<\/p>\n

We in CLLANZ have worked hard over recent years through petitions, submissions, engaging with media, marching on Parliament, appearances at select committees, and actively engaging with Pharmac to advocate for access for CLL patients to Ibrutinib, among other treatments, as well as treatment pathway reforms, and faster, more transparent funding decisions. We\u2019re very proud to have been part of the push to reform Pharmac, which is now seen as\u00a0losing the PR battle<\/a>.<\/p>\n

We hope this work will bear fruit in the coming Budget, but in the meantime we intend to continue our advocacy as vigorously as possible.\u00a0 In this regard I warmly encourage you to support the current\u00a0\u2018Lie Down For Life\u2019<\/em>\u00a0campaign<\/a>\u00a0running nationwide on 12 May by Patient Voice Aotearoa. And if you haven\u2019t already signed their petition to\u00a0Reform Pharmac and Double its Budget<\/strong>, you can still do so\u00a0here<\/a>. This will be presented to Parliament on 12 May, the same day as we Lie Down For Life!<\/p>\n

Kia kaha<\/p>\n

Neil Graham<\/p>\n

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Welcome to issue 10 of the CLL Advocates newsletter. <\/p>\n","protected":false},"author":1,"featured_media":1944,"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":[],"class_list":["post-16777","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-newsletter"],"jetpack_featured_media_url":"https:\/\/clladvocates.nz\/wp-content\/uploads\/2020\/06\/CLLANZ-Favicon.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/16777","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\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=16777"}],"version-history":[{"count":1,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/16777\/revisions"}],"predecessor-version":[{"id":16778,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/16777\/revisions\/16778"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/media\/1944"}],"wp:attachment":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=16777"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=16777"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=16777"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}