{"id":2085,"date":"2019-05-21T11:23:32","date_gmt":"2019-05-21T15:23:32","guid":{"rendered":"http:\/\/aamac.ca\/?p=2085"},"modified":"2019-05-21T11:23:32","modified_gmt":"2019-05-21T15:23:32","slug":"open-letter-to-prime-minister-justin-trudeau-regarding-pmprb-regulations","status":"publish","type":"post","link":"https:\/\/aamac.ca\/fr\/open-letter-to-prime-minister-justin-trudeau-regarding-pmprb-regulations\/","title":{"rendered":"Open Letter to Prime Minister Justin Trudeau regarding PMPRB Regulations"},"content":{"rendered":"<p class=\"qtranxs-available-languages-message qtranxs-available-languages-message-fr\">D\u00e9sol\u00e9, cet article est seulement disponible en <a href=\"https:\/\/aamac.ca\/en\/wp-json\/wp\/v2\/posts\/2085\" class=\"qtranxs-available-language-link qtranxs-available-language-link-en\" title=\"English\">Anglais Am\u00e9ricain<\/a>.<\/p><p>AAMAC has written a letter to the Prime Minister that supports the letter written by <a href=\"https:\/\/www.raredisorders.ca\/open-letter-to-prime-minister-justin-trudeau-regarding-pmprb-regulations\/\">CORD and Myeloma Canada<\/a> on proposed sweeping changes to the drug pricing review board.<\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-753\" src=\"http:\/\/aamac.ca\/wp-content\/uploads\/2018\/06\/LOGO-002-1-300x86.jpg\" alt=\"\" width=\"300\" height=\"86\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>May 8, 2019<\/p>\n<p>&nbsp;<\/p>\n<p>The Right Honourable Justin Trudeau, PC, MP<br \/>\nPrime Minister of Canada<br \/>\n80 Wellington Street<br \/>\nOttawa, Ontario K1A 0A2<\/p>\n<p>&nbsp;<\/p>\n<p>Dear Prime Minister Trudeau,<\/p>\n<p>The Aplastic Anemia &amp; Myelodysplasia Association of Canada (<em>AAMAC<\/em>) is a leading funder of research into bone marrow failure diseases in Canada. Our organization supports patients and caregivers across the country who are living with aplastic anemia (<em>AA<\/em>), myelodysplastic syndromes (<em>MDS<\/em>) and paroxysmal nocturnal hemoglobinuria (<em>PNH<\/em>).<\/p>\n<p>We are writing to you today to express AAMAC\u2019s support for the letter sent to you on April 8, 2019, by the Canadian Organization for Rare Disorders and Myeloma Canada, which outlines in detail major concerns to the sweeping changes proposed to the Patient Medicine Prices Review Board (<em>PMPRB<\/em>).<\/p>\n<p>We share concerns of these two organizations that the regulatory changes will mandate drug prices so low that companies will not launch new drugs in Canada, or they will wait until after they have been available for years everywhere else.<\/p>\n<p>Therapies for patients diagnosed with AA, MDS and PNH rely primarily on \u2018best supportive care,\u2019 blood transfusions, and a limited number of therapies that \u2013 at best- treat symptoms but are not curative.\u00a0 There are drug and gene therapies in drug trials right now that have the potential to significantly improve the lives of people living with these rare bone marrow failure diseases.<\/p>\n<p>Inability to access these new drugs and therapies would have a devastating impact on patients with bone marrow failure diseases, for whom cell and gene therapy may offer a life-changing solution.<\/p>\n<p>We are asking you and your government to reconsider the changes to the PMPRB regulations.\u00a0 We remain deeply concerned that implementation of the PMPRB regulations will obstruct and slow patient access to needed medicines, putting at risk the lives of people who live with rare disorders.<\/p>\n<p>Sincerely,<\/p>\n<p>&nbsp;<\/p>\n<p>Chair, Board of Directors<br \/>\nAplastic Anemia and Myelodysplastic Association of Canada<\/p>\n<p>cc:<\/p>\n<p>The Hon. Ginette Petitpas Taylor, PC, MP, Minister of Health<br \/>\nThe Hon. Bill Morneau, PC, MP, Minister of Finance<br \/>\nThe Hon. Joyce Murray, PC, MP, President of the Treasury Board<br \/>\nDr. Mitch Levine, Chair, Patented Medicine Prices Review Board<br \/>\nDouglas Clark, Executive Director, Patented Medicine Prices Review Board<\/p>","protected":false},"excerpt":{"rendered":"<p>D\u00e9sol\u00e9, cet article est seulement disponible en Anglais Am\u00e9ricain.AAMAC has written a letter to the Prime Minister that supports the letter written by CORD and Myeloma Canada on proposed sweeping changes to the drug pricing review board. &nbsp; &nbsp; &nbsp; &nbsp; May 8, 2019 &nbsp; The Right Honourable Justin Trudeau, PC, MP Prime Minister of [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[7],"tags":[],"acf":[],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/posts\/2085"}],"collection":[{"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/comments?post=2085"}],"version-history":[{"count":0,"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/posts\/2085\/revisions"}],"wp:attachment":[{"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/media?parent=2085"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/categories?post=2085"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aamac.ca\/fr\/wp-json\/wp\/v2\/tags?post=2085"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}