{"id":2901,"date":"2019-05-02T09:21:58","date_gmt":"2019-05-02T13:21:58","guid":{"rendered":"https:\/\/colpittsclinical.com\/?p=2901"},"modified":"2022-08-29T01:58:04","modified_gmt":"2022-08-29T05:58:04","slug":"improving-access-and-affordability-of-new-orphan-drugs-while-ensuring-continuous-investment","status":"publish","type":"post","link":"https:\/\/colpittsclinical.com\/vi\/improving-access-and-affordability-of-new-orphan-drugs-while-ensuring-continuous-investment\/","title":{"rendered":"N\u00e2ng cao kh\u1ea3 n\u0103ng ti\u1ebfp c\u1eadn v\u00e0 t\u00ednh kh\u1ea3 thi v\u1ec1 m\u1eb7t chi ph\u00ed c\u1ee7a c\u00e1c lo\u1ea1i thu\u1ed1c hi\u1ebfm m\u1edbi trong khi \u0111\u1ea3m b\u1ea3o \u0111\u1ea7u t\u01b0 li\u00ean t\u1ee5c."},"content":{"rendered":"<p>Ch\u00fang ta \u0111\u1ec1u bi\u1ebft r\u1eb1ng tr\u00ean to\u00e0n c\u1ea7u v\u1eabn c\u00f2n t\u1ed3n t\u1ea1i nhu c\u1ea7u ph\u1ee9c t\u1ea1p v\u00e0 ch\u01b0a \u0111\u01b0\u1ee3c \u0111\u00e1p \u1ee9ng \u0111\u1ea7y \u0111\u1ee7 v\u1ec1 c\u00e1c lo\u1ea1i thu\u1ed1c m\u1edbi \u0111\u1ec3 \u0111i\u1ec1u tr\u1ecb ung th\u01b0, c\u00e1c b\u1ec7nh t\u1ef1 mi\u1ec5n v\u00e0 c\u00e1c b\u1ec7nh hi\u1ebfm g\u1eb7p v\u00e0 b\u1ec7nh m\u1ed3 c\u00f4i.  Th\u00e1ch th\u1ee9c trong vi\u1ec7c \u0111\u01b0a c\u00e1c lo\u1ea1i thu\u1ed1c m\u1edbi ra th\u1ecb tr\u01b0\u1eddng \u0111\u1ec3 \u0111i\u1ec1u tr\u1ecb c\u00e1c b\u1ec7nh l\u00fd n\u00e0y g\u1eb7p ph\u1ea3i chi ph\u00ed ng\u00e0y c\u00e0ng t\u0103ng trong qu\u00e1 tr\u00ecnh nghi\u00ean c\u1ee9u, s\u1ea3n xu\u1ea5t v\u00e0 ti\u1ebfp th\u1ecb c\u00e1c lo\u1ea1i thu\u1ed1c m\u1edbi. Do v\u1ea5n \u0111\u1ec1 n\u00e0y, H\u1ed9i ngh\u1ecb Th\u1ebf gi\u1edbi v\u1ec1 Thu\u1ed1c Hi\u1ebfm 2019 \u0111\u00e3 t\u1eadp h\u1ee3p m\u1ed9t nh\u00f3m c\u00e1c nh\u00e0 l\u00e3nh \u0111\u1ea1o c\u00f3 uy t\u00edn trong l\u0129nh v\u1ef1c ph\u00e1t tri\u1ec3n thu\u1ed1c cho b\u1ec7nh hi\u1ebfm v\u00e0 b\u1ec7nh m\u1ed3 c\u00f4i \u0111\u1ec3 th\u1ea3o lu\u1eadn v\u1ec1 c\u00e1c \u0111\u1ed5i m\u1edbi trong ng\u00e0nh, v\u00e0 trong m\u1ed9t s\u1ed1 tr\u01b0\u1eddng h\u1ee3p l\u00e0 ch\u00ednh c\u00e1c c\u00f4ng ty c\u1ee7a h\u1ecd, nh\u1eb1m th\u00fac \u0111\u1ea9y s\u1ef1 c\u00e2n b\u1eb1ng gi\u1eefa kh\u1ea3 n\u0103ng ti\u1ebfp c\u1eadn v\u00e0 t\u00ednh kh\u1ea3 thi v\u1ec1 m\u1eb7t t\u00e0i ch\u00ednh.<\/p>\n<p>Dan Faga, Gi\u00e1m \u0111\u1ed1c \u0111i\u1ec1u h\u00e0nh (CEO) c\u1ee7a Spark Therapeutics, \u0111\u00e3 tham gia m\u1ed9t bu\u1ed5i th\u1ea3o lu\u1eadn nh\u00f3m h\u1ea5p d\u1eabn, trong \u0111\u00f3 \u00f4ng chia s\u1ebb v\u1ec1 qu\u00e1 tr\u00ecnh t\u1ea1o ra Spark Path - m\u1ed9t n\u1ec1n t\u1ea3ng cung c\u1ea5p...<em>C\u00e1c kho\u1ea3n ho\u00e0n ti\u1ec1n d\u1ef1a tr\u00ean k\u1ebft qu\u1ea3 v\u00e0 m\u00f4 h\u00ecnh h\u1ee3p \u0111\u1ed3ng s\u00e1ng t\u1ea1o nh\u1eb1m h\u1ed7 tr\u1ee3 quy\u1ec1n truy c\u1eadp c\u1ee7a b\u1ec7nh nh\u00e2n t\u1ea1i Hoa K\u1ef3 \u0111\u1ed3ng th\u1eddi h\u01b0\u1edbng \u0111\u1ebfn vi\u1ec7c gi\u1ea3m thi\u1ec3u r\u1ee7i ro v\u00e0 g\u00e1nh n\u1eb7ng t\u00e0i ch\u00ednh cho c\u00e1c nh\u00e0 cung c\u1ea5p d\u1ecbch v\u1ee5 y t\u1ebf v\u00e0 trung t\u00e2m \u0111i\u1ec1u tr\u1ecb. Trong ch\u01b0\u01a1ng tr\u00ecnh Spark Path bao g\u1ed3m m\u1ed9t ch\u01b0\u01a1ng tr\u00ecnh ho\u00e0n ti\u1ec1n cho b\u1ec7nh nh\u00e2n, theo \u0111\u00f3 h\u1ecd s\u1ebd nh\u1eadn \u0111\u01b0\u1ee3c kho\u1ea3n ho\u00e0n ti\u1ec1n v\u00e0o n\u0103m th\u1ee9 1 v\u00e0 n\u0103m th\u1ee9 3 n\u1ebfu s\u1ea3n ph\u1ea9m m\u00e0 h\u1ecd \u0111ang s\u1eed d\u1ee5ng kh\u00f4ng mang l\u1ea1i hi\u1ec7u qu\u1ea3.\u00a0 <\/em><\/p>\n<p><em>T\u1eeb trang web Spark: \u201c<\/em>LUXTURNA v\u00e0 c\u00e1c li\u1ec7u ph\u00e1p ti\u1ec1m n\u0103ng kh\u00e1c ch\u1ec9 c\u1ea7n \u0111i\u1ec1u tr\u1ecb m\u1ed9t l\u1ea7n \u0111ang ph\u1ea3i \u0111\u1ed1i m\u1eb7t v\u1edbi nh\u1eefng th\u00e1ch th\u1ee9c \u0111\u1eb7c bi\u1ec7t v\u1ec1 b\u1ea3o hi\u1ec3m y t\u1ebf do c\u00e1c quy \u0111\u1ecbnh v\u00e0 th\u1ef1c ti\u1ec5n hi\u1ec7n h\u00e0nh trong h\u1ec7 th\u1ed1ng y t\u1ebf Hoa K\u1ef3. C\u00e1c r\u00e0o c\u1ea3n trong vi\u1ec7c \u00e1p d\u1ee5ng c\u00e1c m\u00f4 h\u00ecnh thay th\u1ebf bao g\u1ed3m s\u1ef1 t\u1eadp trung c\u1ee7a h\u1ec7 th\u1ed1ng v\u00e0o gi\u00e1 tr\u1ecb ng\u1eafn h\u1ea1n (ch\u1ee7 y\u1ebfu v\u00ec h\u1ea7u h\u1ebft b\u1ec7nh nh\u00e2n thay \u0111\u1ed5i c\u00f4ng ty b\u1ea3o hi\u1ec3m y t\u1ebf trung b\u00ecnh m\u1ed7i ba n\u0103m), y\u00eau c\u1ea7u b\u00e1o c\u00e1o gi\u00e1 c\u1ee7a ch\u00ednh ph\u1ee7 kh\u00f4ng \u0111\u01b0\u1ee3c thi\u1ebft k\u1ebf \u0111\u1ec3 ph\u1ea3n \u00e1nh c\u00e1c th\u1ecfa thu\u1eadn d\u1ef1a tr\u00ean k\u1ebft qu\u1ea3, do \u0111\u00f3 h\u1ea1n ch\u1ebf kh\u1ea3 n\u0103ng c\u1ee7a nh\u00e0 s\u1ea3n xu\u1ea5t trong vi\u1ec7c cung c\u1ea5p c\u00e1c kho\u1ea3n ho\u00e0n tr\u1ea3 d\u1ef1a tr\u00ean hi\u1ec7u qu\u1ea3 \u0111\u00e1ng k\u1ec3, \u0111\u1eb7c bi\u1ec7t \u0111\u1ed1i v\u1edbi c\u00e1c b\u1ec7nh c\u00f3 s\u1ed1 l\u01b0\u1ee3ng b\u1ec7nh nh\u00e2n nh\u1ecf v\u00e0 m\u00f4 h\u00ecnh ph\u00e2n ph\u1ed1i ph\u1ee9c t\u1ea1p, \u0111i\u1ec1u n\u00e0y l\u00e0m t\u0103ng chi ph\u00ed v\u00e0 r\u1ee7i ro t\u00e0i ch\u00ednh cho c\u00e1c b\u00ean tham gia v\u00e0o vi\u1ec7c cung c\u1ea5p v\u00e0 thanh to\u00e1n thu\u1ed1c chuy\u00ean khoa v\u00e0 ch\u0103m s\u00f3c y t\u1ebf chuy\u00ean s\u00e2u.\u201d<\/p>\n<p>\u00d4ng Faga ti\u1ebfp t\u1ee5c gi\u1ea3i th\u00edch r\u1eb1ng nh\u1edd Spark Path, Spark Therapeutics \u0111\u00e3 \u0111i\u1ec1u tr\u1ecb cho nhi\u1ec1u b\u1ec7nh nh\u00e2n h\u01a1n trong 1 n\u0103m sau khi \u0111\u01b0\u1ee3c ph\u00ea duy\u1ec7t so v\u1edbi 10 n\u0103m trong giai \u0111o\u1ea1n ph\u00e1t tri\u1ec3n.<\/p>\n<p>Ngo\u00e0i ra, Emil Kakkis, Gi\u00e1m \u0111\u1ed1c \u0110i\u1ec1u h\u00e0nh (CEO) c\u1ee7a Ultragenyx, \u0111\u00e3 kh\u1eb3ng \u0111\u1ecbnh r\u1eb1ng \u201cm\u1ecdi b\u1ec7nh nh\u00e2n c\u00f3 th\u1ec3 h\u01b0\u1edfng l\u1ee3i \u0111\u1ec1u n\u00ean \u0111\u01b0\u1ee3c ti\u1ebfp c\u1eadn\u201d. Ultragenyx \u0111\u00e3 \u0111\u1ec1 xu\u1ea5t m\u1ed9t m\u00f4 h\u00ecnh \u0111\u1ecbnh gi\u00e1 h\u1ee3p l\u00fd h\u01a1n, v\u1edbi cam k\u1ebft t\u1eeb c\u00e1c nh\u00e0 t\u00e0i tr\u1ee3 y t\u1ebf (payers) s\u1ebd h\u1ed7 tr\u1ee3 c\u1ea3 b\u1ec7nh nh\u00e2n ng\u01b0\u1eddi l\u1edbn v\u00e0 tr\u1ebb em m\u1ed9t c\u00e1ch c\u00f4ng b\u1eb1ng. Kakkis ti\u1ebfp t\u1ee5c gi\u1ea3i th\u00edch r\u1eb1ng s\u1edf th\u00edch c\u1ee7a c\u00e1c nh\u00e0 t\u00e0i tr\u1ee3 y t\u1ebf truy\u1ec1n th\u1ed1ng l\u00e0 t\u1eadp trung v\u00e0o b\u1ec7nh nhi, v\u00ec h\u1ecd \u0111\u01b0\u1ee3c cho l\u00e0 c\u00f3 nhu c\u1ea7u ch\u01b0a \u0111\u01b0\u1ee3c \u0111\u00e1p \u1ee9ng cao h\u01a1n.  Tuy nhi\u00ean, Kakkis ki\u00ean quy\u1ebft cho r\u1eb1ng vi\u1ec7c \u0111\u1ea3m b\u1ea3o quy\u1ec1n truy c\u1eadp cho t\u1ea5t c\u1ea3 b\u1ec7nh nh\u00e2n c\u00f3 th\u1ec3 h\u01b0\u1edfng l\u1ee3i t\u1eeb thu\u1ed1c l\u00e0 \u0111i\u1ec1u c\u1ea5p thi\u1ebft, kh\u00f4ng ch\u1ec9 nh\u1eefng b\u1ec7nh nh\u00e2n \u0111\u01b0\u1ee3c cho l\u00e0 c\u00f3 nhu c\u1ea7u ch\u01b0a \u0111\u01b0\u1ee3c \u0111\u00e1p \u1ee9ng cao h\u01a1n. Cu\u1ed1i c\u00f9ng, \u00f4ng d\u1eabn ch\u1ee9ng m\u1ed9t v\u00ed d\u1ee5 v\u1ec1 s\u1ef1 \u0111\u1ed5i m\u1edbi t\u1eeb nh\u00e0 ph\u00e1t tri\u1ec3n thu\u1ed1c Vertex t\u1ea1i Ireland, n\u01a1i h\u1ecd \u0111\u00e3 th\u1ecfa thu\u1eadn v\u1edbi H\u1ec7 th\u1ed1ng Y t\u1ebf Ireland \u0111\u1ec3 \u0111i\u1ec1u tr\u1ecb cho t\u1ea5t c\u1ea3 b\u1ec7nh nh\u00e2n v\u1edbi m\u1ed9t m\u1ee9c gi\u00e1 c\u1ed1 \u0111\u1ecbnh \u2013 m\u1ed9t v\u00ed d\u1ee5 thuy\u1ebft ph\u1ee5c v\u1ec1 s\u1ef1 \u0111\u1ed5i m\u1edbi m\u00e0 \u00f4ng tin r\u1eb1ng h\u1ec7 th\u1ed1ng y t\u1ebf M\u1ef9 c\u00f3 th\u1ec3 h\u1ecdc h\u1ecfi v\u00e0 \u00e1p d\u1ee5ng.<\/p>\n<p>R\u00f5 r\u00e0ng, kh\u00f4ng c\u00f3 gi\u1ea3i ph\u00e1p \u0111\u01a1n gi\u1ea3n n\u00e0o cho v\u1ea5n \u0111\u1ec1 ph\u1ee9c t\u1ea1p n\u00e0y. Tuy nhi\u00ean, khi c\u00e1c nh\u00e0 l\u00e3nh \u0111\u1ea1o trong ng\u00e0nh c\u1ee7a ch\u00fang ta quy\u1ebft \u0111\u1ecbnh h\u1ee3p t\u00e1c v\u00e0 \u0111\u1ed5i m\u1edbi c\u00f9ng nhau \u0111\u1ec3 th\u00fac \u0111\u1ea9y s\u1ef1 thay \u0111\u1ed5i, nh\u1eb1m mang l\u1ea1i s\u1ef1 ti\u1ebfp c\u1eadn v\u00e0 kh\u1ea3 n\u0103ng chi tr\u1ea3 t\u1ed1t h\u01a1n, m\u1ecdi ng\u01b0\u1eddi \u0111\u1ec1u \u0111\u01b0\u1ee3c h\u01b0\u1edfng l\u1ee3i \u2013 bao g\u1ed3m c\u1ea3 th\u00e0nh vi\u00ean quan tr\u1ecdng nh\u1ea5t trong cu\u1ed9c th\u1ea3o lu\u1eadn n\u00e0y, \u0111\u00f3 l\u00e0 b\u1ec7nh nh\u00e2n.<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>We all know that there is a complex and continued unmet need for new medicines across the Globe to treat cancer, immunological and rare and orphan diseases.\u00a0 The challenge to bring new drugs to market to treat these types of indications is met with the rising cost of developing, producing and marketing these new drugs.\u00a0 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":2904,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[6,9],"tags":[],"class_list":["post-2901","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clinical-trials","category-events"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>improving-access-of-new-orphan-drugs<\/title>\n<meta name=\"description\" content=\"It is a challenge to bring new drugs to market. 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