{"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\/lt\/improving-access-and-affordability-of-new-orphan-drugs-while-ensuring-continuous-investment\/","title":{"rendered":"Nauj\u0173 ret\u0173j\u0173 vaist\u0173 prieinamumo ir \u012fperkamumo gerinimas u\u017etikrinant nuolatines investicijas"},"content":{"rendered":"

Visi \u017einome, kad visame pasaulyje vis dar egzistuoja sud\u0117tingas ir nuolatinis nepatenkintas nauj\u0173 vaist\u0173 poreikis v\u0117\u017eiui, imunologin\u0117ms, retoms ir retai pasitaikan\u010dioms ligoms gydyti. I\u0161\u0161\u016bkis pateikti rinkai naujus vaistus, skirtus \u0161i\u0173 indikacij\u0173 gydymui, susiduria su did\u0117jan\u010diomis \u0161i\u0173 nauj\u0173 vaist\u0173 k\u016brimo, gamybos ir prekybos jais i\u0161laidomis. D\u0117l \u0161ios nuolatin\u0117s problemos \u012f Pasaulin\u012f ret\u0173j\u0173 vaist\u0173 kongres\u0105 \"World Orphan Drug Congress 2019\" susirinko daug pasiekusi\u0173 ret\u0173j\u0173 ir ret\u0173j\u0173 lig\u0173 k\u016brimo pasaulio lyderi\u0173, kurie aptar\u0117 pramon\u0117s, o kai kuriais atvejais ir savo \u012fmoni\u0173 naujoves, padedan\u010dias u\u017etikrinti pusiausvyr\u0105 tarp prieinamumo ir \u012fperkamumo.<\/p>\n

Danas Faga, \u201cSpark Therapeutics\" generalinis direktorius, sureng\u0117 \u012ftikinam\u0105 diskusij\u0105, kurioje kalb\u0117jo apie \"Spark Path\", kuri \"si\u016blo o\u012fplaukomis pagr\u012fstos nuolaidos ir naujovi\u0161kas sutar\u010di\u0173 sudarymo modelis, kuris padeda u\u017etikrinti pacient\u0173 prieig\u0105 JAV, kartu siekdamas suma\u017einti rizik\u0105 ir finansin\u0119 na\u0161t\u0105 mok\u0117tojams ir gydymo centrams.\u201d \u012e \"Spark Path\" program\u0105 \u012ftraukta nuolaid\u0173 programa pacientams, pagal kuri\u0105 jie gauna nuolaid\u0105 pirmaisiais ir tre\u010diaisiais metais, jei j\u0173 vartojamas preparatas neveikia.\u00a0 <\/em><\/p>\n

I\u0161 \u201cSpark\" svetain\u0117s: \"<\/em>LUXTURNA ir kiti galimi vienkartiniai gydymo b\u016bdai susiduria su unikaliais sveikatos draudimo i\u0161\u0161\u016bkiais, atsi\u017evelgiant \u012f dabartin\u0119 JAV sveikatos prie\u017ei\u016bros sistemos praktik\u0105 ir taisykles. Kli\u016btys, trukdan\u010dios si\u016blyti alternatyvius modelius, yra \u0161ios: sistemos d\u0117mesys trumpalaikei vertei (daugiausia d\u0117l to, kad dauguma pacient\u0173 vidutini\u0161kai kas trejus metus kei\u010dia sveikatos draudimo bendrov\u0119), vyriausybiniai kain\u0173 ataskait\u0173 teikimo reikalavimai, kurie n\u0117ra skirti tam tikriems rezultatais pagr\u012fstiems susitarimams atspind\u0117ti, tod\u0117l riboja gamintojo galimybes si\u016blyti dideles rezultatais pagr\u012fstas nuolaidas, ypa\u010d ligoms, kuriomis serga ma\u017eos pacient\u0173 grup\u0117s, ir sud\u0117tingi platinimo modeliai, kurie padidina i\u0161laidas ir finansin\u0119 rizik\u0105 \u0161alims, dalyvaujan\u010dioms teikiant ir kompensuojant specializuotus vaistus ir specializuot\u0105 medicinin\u0119 prie\u017ei\u016br\u0105.\u201d<\/p>\n

P. Faga toliau ai\u0161kino, kad d\u0117l \"Spark Path\" \"Spark Therapeutics\" per vienerius metus po patvirtinimo gyd\u0117 daugiau pacient\u0173 nei per 10 met\u0173 k\u016brimo metu.<\/p>\n

Be to, \u201cUltragenyx\u201d generalinis direktorius Emilis Kakkis teig\u0117, kad \"kiekvienas pacientas, kuriam tai b\u016bt\u0173 naudinga, tur\u0117t\u0173 tur\u0117ti galimyb\u0119 naudotis\". \"Ultragenyx\" pasi\u016bl\u0117 nuosaikesn\u012f kainodaros model\u012f, o mok\u0117tojai pa\u017ead\u0117jo vienodai remti tiek suaugusius, tiek vaik\u0173 pacientus. Kakkis paai\u0161kino, kad mok\u0117tojai istori\u0161kai pirmenyb\u0119 teik\u0117 pediatrams, nes j\u0173 nepatenkinti poreikiai yra didesni. Ta\u010diau Kakkis tvirtai \u012fsitikin\u0119s, kad b\u016btina, jog visi pacientai, kuriems vaistas gali b\u016bti naudingas, tur\u0117t\u0173 galimyb\u0119 juo naudotis, o ne tik tie, kuri\u0173 nepatenkinti poreikiai yra didesni. Baigdamas jis pamin\u0117jo Airijos vaist\u0173 gamintojos \"Vertex\" inovacij\u0173 pavyzd\u012f, kai ji susitar\u0117 su Airijos sveikatos apsaugos sistema d\u0117l vis\u0173 pacient\u0173 gydymo u\u017e nustatyt\u0105 kain\u0105 - tai \u012ftikinamas inovacij\u0173 pavyzdys, kurio, jo nuomone, JAV sistemai b\u016bt\u0173 naudinga siekti.<\/p>\n

Akivaizdu, kad \u0161io sud\u0117tingo klausimo n\u0117ra paprasto sprendimo. Ta\u010diau kai m\u016bs\u0173 pramon\u0117s lyderiai nusprend\u017eia bendradarbiauti ir kartu diegti naujoves, kad paskatint\u0173 poky\u010dius ir u\u017etikrint\u0173 geresn\u0119 prieig\u0105 ir prieinamum\u0105, naud\u0105 gauna visi, \u012fskaitant svarbiausi\u0105 \u0161ios diskusijos dalyv\u012f - pacient\u0105.<\/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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