{"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\/cs\/improving-access-and-affordability-of-new-orphan-drugs-while-ensuring-continuous-investment\/","title":{"rendered":"Zlep\u0161en\u00ed p\u0159\u00edstupu k nov\u00fdm l\u00e9k\u016fm na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed a jejich cenov\u00e9 dostupnosti p\u0159i zaji\u0161t\u011bn\u00ed kontinu\u00e1ln\u00edch investic"},"content":{"rendered":"

V\u0161ichni v\u00edme, \u017ee na cel\u00e9m sv\u011bt\u011b existuje komplexn\u00ed a st\u00e1le neuspokojen\u00e1 pot\u0159eba nov\u00fdch l\u00e9k\u016f na l\u00e9\u010dbu rakoviny, imunologick\u00fdch a vz\u00e1cn\u00fdch a ojedin\u011bl\u00fdch onemocn\u011bn\u00ed. V\u00fdzva k uveden\u00ed nov\u00fdch l\u00e9k\u016f na trh pro l\u00e9\u010dbu t\u011bchto typ\u016f indikac\u00ed nar\u00e1\u017e\u00ed na rostouc\u00ed n\u00e1klady na v\u00fdvoj, v\u00fdrobu a uv\u00e1d\u011bn\u00ed t\u011bchto nov\u00fdch l\u00e9k\u016f na trh. V d\u016fsledku tohoto p\u0159etrv\u00e1vaj\u00edc\u00edho probl\u00e9mu se na Sv\u011btov\u00e9m kongresu o l\u00e9\u010divech pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed 2019 se\u0161la skupina uzn\u00e1van\u00fdch l\u00eddr\u016f ve sv\u011bt\u011b v\u00fdvoje vz\u00e1cn\u00fdch a vz\u00e1cn\u011b se vyskytuj\u00edc\u00edch onemocn\u011bn\u00ed, aby diskutovali o inovac\u00edch v odv\u011btv\u00ed a v n\u011bkter\u00fdch p\u0159\u00edpadech i o sv\u00fdch vlastn\u00edch spole\u010dnostech, kter\u00e9 pom\u00e1haj\u00ed nastolit rovnov\u00e1hu mezi p\u0159\u00edstupnost\u00ed a cenovou dostupnost\u00ed.<\/p>\n

Dan Faga, gener\u00e1ln\u00ed \u0159editel spole\u010dnosti Spark Therapeutics, poskytl poutavou panelovou diskusi, v n\u00ed\u017e hovo\u0159il o vytvo\u0159en\u00ed Spark Path, kter\u00e1 \u201cnab\u00edz\u00ed oa inovativn\u00ed smluvn\u00ed model, kter\u00fd podporuje p\u0159\u00edstup pacient\u016f v USA a z\u00e1rove\u0148 se sna\u017e\u00ed sn\u00ed\u017eit riziko a finan\u010dn\u00ed z\u00e1t\u011b\u017e pro pl\u00e1tce a l\u00e9\u010debn\u00e1 centra.\u201d Sou\u010d\u00e1st\u00ed programu Spark Path je program slev pro pacienty, kdy v 1. a 3. roce dostanou slevu, pokud p\u0159\u00edpravek, kter\u00fd u\u017e\u00edvaj\u00ed, nezab\u00edr\u00e1.\u00a0 <\/em><\/p>\n

Z webov\u00fdch str\u00e1nek Spark: \u201c<\/em>LUXTURNA a dal\u0161\u00ed potenci\u00e1ln\u00ed jednor\u00e1zov\u00e9 terapie \u010del\u00ed vzhledem k sou\u010dasn\u00fdm zvyklostem a p\u0159edpis\u016fm v americk\u00e9m syst\u00e9mu zdravotn\u00ed p\u00e9\u010de jedine\u010dn\u00fdm v\u00fdzv\u00e1m v oblasti zdravotn\u00edho poji\u0161t\u011bn\u00ed. P\u0159ek\u00e1\u017eky pro nab\u00eddku alternativn\u00edch model\u016f zahrnuj\u00ed zam\u011b\u0159en\u00ed syst\u00e9mu na kr\u00e1tkodobou hodnotu (z velk\u00e9 \u010d\u00e1sti proto, \u017ee v\u011bt\u0161ina pacient\u016f m\u011bn\u00ed zdravotn\u00ed poji\u0161\u0165ovnu v pr\u016fm\u011bru ka\u017ed\u00e9 t\u0159i roky), vl\u00e1dn\u00ed po\u017eadavky na vykazov\u00e1n\u00ed cen, kter\u00e9 nejsou navr\u017eeny tak, aby odr\u00e1\u017eely ur\u010dit\u00e1 ujedn\u00e1n\u00ed zalo\u017een\u00e1 na v\u00fdsledc\u00edch, a proto omezuj\u00ed schopnost v\u00fdrobce nab\u00eddnout v\u00fdznamn\u00e9 slevy zalo\u017een\u00e9 na v\u00fdkonu, zejm\u00e9na u onemocn\u011bn\u00ed s malou populac\u00ed pacient\u016f, a komplikovan\u00e9 distribu\u010dn\u00ed modely, kter\u00e9 zvy\u0161uj\u00ed n\u00e1klady a finan\u010dn\u00ed rizika stran\u00e1m zapojen\u00fdm do poskytov\u00e1n\u00ed a \u00fahrady speci\u00e1ln\u00edch l\u00e9\u010div a specializovan\u00e9 l\u00e9ka\u0159sk\u00e9 p\u00e9\u010de.\u201d<\/p>\n

Pan Faga d\u00e1le vysv\u011btlil, \u017ee d\u00edky Spark Path spole\u010dnost Spark Therapeutics za rok po schv\u00e1len\u00ed l\u00e9\u010dila v\u00edce pacient\u016f ne\u017e za 10 let v\u00fdvoje.<\/p>\n

Emil Kakkis, gener\u00e1ln\u00ed \u0159editel spole\u010dnosti Ultragenyx, nav\u00edc uvedl, \u017ee \u201cka\u017ed\u00fd pacient, kter\u00fd by z toho m\u011bl prosp\u011bch, by m\u011bl m\u00edt p\u0159\u00edstup\u201d. Spole\u010dnost Ultragenyx navrhla m\u00edrn\u011bj\u0161\u00ed cenov\u00fd model s p\u0159\u00edslibem pl\u00e1tc\u016f, \u017ee budou stejn\u011b podporovat dosp\u011bl\u00e9 i d\u011btsk\u00e9 pacienty. Kakkis d\u00e1le vysv\u011btlil, \u017ee pl\u00e1tci se v minulosti zam\u011b\u0159ovali sp\u00ed\u0161e na pediatrii, proto\u017ee u n\u00ed byla vn\u00edm\u00e1na vy\u0161\u0161\u00ed neuspokojen\u00e1 pot\u0159eba. Kakkis je v\u0161ak pevn\u011b p\u0159esv\u011bd\u010den, \u017ee je nezbytn\u00e9, aby k l\u00e9ku m\u011bli p\u0159\u00edstup v\u0161ichni pacienti, pokud by z n\u011bj mohli m\u00edt prosp\u011bch, nikoli pouze ti, u nich\u017e je vn\u00edm\u00e1na vy\u0161\u0161\u00ed neuspokojen\u00e1 pot\u0159eba. Na z\u00e1v\u011br uvedl p\u0159\u00edklad inovace od v\u00fdrobce l\u00e9k\u016f Vertex v Irsku, kde se dohodl s irsk\u00fdm zdravotnick\u00fdm syst\u00e9mem na l\u00e9\u010db\u011b v\u0161ech pacient\u016f za stanovenou cenu - co\u017e je p\u0159esv\u011bd\u010div\u00fd p\u0159\u00edklad inovace, o n\u011bm\u017e je pevn\u011b p\u0159esv\u011bd\u010den, \u017ee by bylo vhodn\u00e9, aby se o n\u011bj americk\u00fd syst\u00e9m pokusil.<\/p>\n

Je z\u0159ejm\u00e9, \u017ee tento slo\u017eit\u00fd probl\u00e9m nem\u00e1 jednoduch\u00e9 \u0159e\u0161en\u00ed. Pokud se v\u0161ak vedouc\u00ed p\u0159edstavitel\u00e9 na\u0161eho odv\u011btv\u00ed rozhodnou spolupracovat a inovovat, aby spole\u010dn\u011b prosadili zm\u011bny, kter\u00e9 zajist\u00ed lep\u0161\u00ed dostupnost a cenovou dostupnost, vyd\u011blaj\u00ed na tom v\u0161ichni - v\u010detn\u011b nejd\u016fle\u017eit\u011bj\u0161\u00edho \u00fa\u010dastn\u00edka t\u00e9to diskuse, pacienta.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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 […]<\/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":"\nimproving-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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