{"id":16863,"date":"2021-08-02T10:06:12","date_gmt":"2021-08-01T21:06:12","guid":{"rendered":"https:\/\/clladvocates.nz\/?p=16863"},"modified":"2021-08-02T10:20:45","modified_gmt":"2021-08-01T21:20:45","slug":"newsletter-13-submission-to-panel-reviewing-pharmac","status":"publish","type":"post","link":"https:\/\/clladvocates.nz\/?p=16863","title":{"rendered":"Newsletter #13: Submission to Panel Reviewing Pharmac"},"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; uncode_shortcode_id=&#8221;181036&#8243;]<b>Newsletter #13: Submission to Panel reviewing Pharmac<\/b>[\/vc_custom_heading][vc_column_text uncode_shortcode_id=&#8221;130899&#8243;]Dear Friends<\/p>\n<p>Our major activity over the past month has been engaging with the independent <a href=\"https:\/\/pharmacreview.health.govt.nz\/\" data-cke-saved-href=\"https:\/\/pharmacreview.health.govt.nz\/\">Panel<\/a> set up by the Government to review Pharmac. \u00a0In addition to preparing a submission to the Panel, we were able to meet and present our submission to them in person, and we also attended a workshop for patient advocacy groups.\u00a0 See our submission <a href=\"https:\/\/clladvocates.nz\/wp-content\/uploads\/2021\/08\/CLLANZ_Submission-_to_Pharmac_Review_Panel-_160721.pdf\" data-cke-saved-href=\"https:\/\/clladvocates.nz\/wp-content\/uploads\/2021\/08\/CLLANZ_Submission-_to_Pharmac_Review_Panel-_160721.pdf\">here<\/a>.<\/p>\n<p>Fellow trustee Dr Ben Schrader, CLL specialist and Malahgan Institute Clinical Director Dr Rob Weinkove and I presented our case to the Panel, and together with the ensuing dialogue we felt it was a valuable and hopefully productive session.\u00a0 The workshop which was attended by all but one member of the Panel and around 16 patient advocacy groups, demonstrated a strong uniformity of depth and breadth of concerns by attendees on the failings of Pharmac regarding funding applications for medical treatment.<\/p>\n<p>The key points we made there and in our submission were as follows:<\/p>\n<ul>\n<li>Dialogue between Pharmac and agencies making applications for funding is characterised by long delays, lack of feedback as to where a therapy is at in the funding consideration process, and lack of transparency. \u00a0A much more open approach to dialogue is required.<\/li>\n<li>There are inefficiencies and blurred responsibilities in the structure and function of Pharmac, eg assessment and procurement need to be done by separate organisations.<\/li>\n<li>Funding is a major issue, both absolute budget, and the percentage of health budget NZ spends on medications compared to other OECD countries.<\/li>\n<li>Opinions of NZ consultants and specialist societies are rejected, as are international therapeutic guidelines put together by world authorities. There are examples, too, of the medical literature opinion being rejected as inadequate.<\/li>\n<li>There are examples of medications being widely available in other countries that are life-saving, and which Pharmac rejects funding thereof. This has resulted in people leaving NZ to get access to these life-saving medications. Case histories of such funding applications to Pharmac are available.<\/li>\n<li>Lack of funded international standard-of-care treatments in NZ also means we have very few clinical trials, a loss both for patients and clinicians.<\/li>\n<li>There are mechanisms for assessing how efficacious a drug is eg QALY, which should be a component of Pharmac\u2019s decision process. Another component of non-funding of therapies is that those who can fund medications survive, and those who can\u2019t don\u2019t.<\/li>\n<li>Several attendees commented on \u201chidden\u201d costs of treatment not being considered by Pharmac, such as the need to attend a tertiary hospital eg Day Stay Unit for treatment, which might involve long travel times for some people, the need to curtail employment, and the extra challenges that the elderly, disabled, and minorities such as M\u0101ori and rural living people face in accessing health care. Cancer Care at the Crossroads is an expansive guide to how oncological services in NZ should be.<\/li>\n<li>The consequences of successful treatment, such as returning to work as a fully functional member of society needs also to be factored into costs\/savings.<\/li>\n<li>There are international models that function better re drug funding than Pharmac that Pharmac could transition into eg UK (NICE), Canada (CADTH),and Australia (PBAC).<\/li>\n<li>There have been major improvements in treatment options in oncology particularly over the last decade plus, but Pharmac\u2019s response to these, often expensive, therapies has been anachronistic, and people are dying unnecessarily as a consequence.<\/li>\n<li>Vacillation has been a feature of serial decisions by Pharmac re grading of funding recommendations for medications. For an example of this see the final page of the <a href=\"https:\/\/clladvocates.nz\/wp-content\/uploads\/2021\/08\/CLLANZ_Submission-_to_Pharmac_Review_Panel-_160721.pdf\" data-cke-saved-href=\"https:\/\/clladvocates.nz\/wp-content\/uploads\/2021\/08\/CLLANZ_Submission-_to_Pharmac_Review_Panel-_160721.pdf\">submission<\/a> on the history of Pharmac committee decisions over the past 6 years regarding ibrutinib.<\/li>\n<li>\u201cDeeply frustrating\u201c has been an expression used to describe the interaction between funding application agencies and Pharmac.<\/li>\n<\/ul>\n<p>The Review Panel will present its interim report to the Government on 16 August. We are of course awaiting this with great interest, and I will report to you again as soon as we\u2019ve had an opportunity to digest it.<\/p>\n<p>Best wishes<\/p>\n<p><img decoding=\"async\" src=\"https:\/\/gallery.mailchimp.com\/07e722b22bba0df49777827cd\/images\/4e0add7f-ce9a-408b-8e8d-2fd752b5d69e.png\" width=\"200\" height=\"74\" data-file-id=\"4630661\" data-cke-saved-src=\"https:\/\/gallery.mailchimp.com\/07e722b22bba0df49777827cd\/images\/4e0add7f-ce9a-408b-8e8d-2fd752b5d69e.png\" \/><\/p>\n<p>Neil Graham[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Our major activity over the past month has been engaging with the independent Panel set up by the Government to review Pharmac.  In addition to preparing a submission to the Panel, we were able to meet and present our submission to them in person, and we also attended a workshop for patient advocacy groups.  <\/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-16863","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\/16863","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=16863"}],"version-history":[{"count":3,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/16863\/revisions"}],"predecessor-version":[{"id":16866,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/posts\/16863\/revisions\/16866"}],"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=16863"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=16863"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=16863"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}