Finan\u010dn\u00ed \u00fa\u0159ad nem\u016f\u017ee prominout rodi\u010d\u016fm mal\u00e9ho Max\u00edka posti\u017een\u00e9ho spin\u00e1ln\u00ed svalovou atrofi\u00ed zaplacen\u00ed DPH za nov\u00fd l\u00e9k ze Spojen\u00fdch st\u00e1t\u016f. \u0158ekla to ministryn\u011b financ\u00ed. Jedn\u00e1 se o l\u00e9k, na kter\u00fd se slo\u017eili lid\u00e9 ve ve\u0159ejn\u00e9 sb\u00edrce a stoj\u00ed p\u0159es 50 000 000 K\u010d. Rodina tak bude muset na dan\u00edch zaplatit dal\u0161\u00ed 5,5 milionu korun. \u00da\u0159edn\u00edci pr\u00fd ale hledaj\u00ed cesty, jak rodin\u011b pomoci.
redaktorka
Na Max\u00edkovu l\u00e9\u010dbu se slo\u017eilo p\u0159es 70 000 lid\u00ed z cel\u00e9 republiky. Dali dohromady u\u017e v\u00edce ne\u017e 50 000 000 K\u010d. Rodi\u010de te\u010f ale maj\u00ed zaplatit za nov\u00fd l\u00e9k Zolgensma dal\u0161\u00edch 5,5 milionu na DPH. O probl\u00e9mu u\u017e s nimi na popud m\u00e9di\u00ed za\u010dali jednat \u00fa\u0159edn\u00edci z finan\u010dn\u00ed spr\u00e1vy.
Alena SCHILLEROV\u00c1, ministryn\u011b financ\u00ed \/nestr. za ANO\/
Nezn\u00e1me v\u016fbec j\u00e1dro toho p\u0159\u00edb\u011bhu z hlediska dan\u00ed, abych mohla \u0159\u00edct jak a co bude, kde vznikne to DPH, kdo ho bude platit. Tak\u017ee toto v\u0161echno je, pros\u00edm v\u00e1s, v b\u011bhu. Obecn\u011b plat\u00ed, \u017ee prominout da\u0148 nemohu. To \u0159\u00edk\u00e1m otev\u0159en\u011b. Ale samoz\u0159ejm\u011b ten p\u0159\u00edb\u011bh je\u0161t\u011b m\u016f\u017ee m\u00edt celou \u0159adu \u0159e\u0161en\u00ed a samoz\u0159ejm\u011b do toho vt\u00e1hnu i Ministerstvo zdravotnictv\u00ed, proto\u017ee tam tak\u00e9 mus\u00edme zkoumat, odkud ten l\u00e9k je, jestli je registrov\u00e1n.
redaktorka
L\u00e9k na registraci u Evropsk\u00e9 l\u00e9kov\u00e9 agentury teprve \u010dek\u00e1. Mohla by ji schv\u00e1lit do n\u011bkolika t\u00fddn\u016f a\u017e m\u011bs\u00edc\u016f. Pak p\u0159ijde na \u0159adu schvalov\u00e1n\u00ed v \u010cesku.
Jana HABERLOV\u00c1, neurolo\u017eka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK a FN Motol
My jako odborn\u00e1 spole\u010dnost d\u011btsk\u00e9 neurologie vyjdeme v jedn\u00e1n\u00ed s pl\u00e1tci, jestli by byli ochotni tuto l\u00e9\u010dbu hradit \u010desk\u00fdm pacient\u016fm. My u\u017e p\u0159edb\u011b\u017en\u011b jsme s nimi o t\u00e9to problematice mluvili. Samoz\u0159ejm\u011b zat\u00edm nem\u016f\u017ee \u0159\u00edci rozhodn\u00e9 slovo, ale mysl\u00edm si, \u017ee by tady teoreticky dohoda b\u00fdt mohla.
redaktorka
Aplikaci l\u00e9k\u016f pro samopl\u00e1tce, tedy Max\u00edkovy rodi\u010de, to ale nebr\u00e1n\u00ed. L\u00e9ka\u0159i v Motole se u\u017e na to chystaj\u00ed. Mus\u00ed ale proj\u00edt \u0161kolen\u00edm a dostat akreditaci. Pak si budou muset vy\u017e\u00e1dat souhlas od St\u00e1tn\u00edho \u00fastavu pro kontrolu l\u00e9\u010div a Ministerstva zdravotnictv\u00ed. Max\u00edk\u016fv p\u0159\u00edpad sleduj\u00ed i rodi\u010de dal\u0161\u00edch stejn\u011b posti\u017een\u00fdch d\u011bt\u00ed. Je jich odhadem 5-7. Ti tak\u00e9 sh\u00e1n\u011bj\u00ed pen\u00edze kde se d\u00e1.
Radka HOFEROV\u00c1, Oliverova matka, www.nadejeprooliho.cz
Sl\u00edbila jsem mal\u00e9mu, \u017ee dokud ty pen\u00edze nebudou na \u00fa\u010dt\u011b, nebo nebudeme slavit druh\u00e9 narozeniny, tak to nevzd\u00e1m.
redaktorka
Rodi\u010de d\u011bt\u00ed se spin\u00e1ln\u00ed svalovou atrofi\u00ed poukazuj\u00ed z\u00e1rove\u0148 na fakt, \u017ee tato nemoc se d\u00e1 odhalit hned po narozen\u00ed pomoc\u00ed genetick\u00fdch test\u016f. Stoj\u00ed ale 7 000 K\u010d a nikdo z l\u00e9ka\u0159\u016f v porodnic\u00edch jim o nich ne\u0159ekl. \u010c\u00edm d\u0159\u00edv se toti\u017e na nemoc p\u0159ijde, t\u00edm d\u0159\u00edv se d\u00e1 odum\u00edr\u00e1n\u00ed nervov\u00fdch bun\u011bk zastavit.<\/p>\n\n\n\n
report\u00e1\u017e televize Prima. <\/p>\n","protected":false},"excerpt":{"rendered":"
Finan\u010dn\u00ed \u00fa\u0159ad nem\u016f\u017ee prominout rodi\u010d\u016fm mal\u00e9ho Max\u00edka posti\u017een\u00e9ho spin\u00e1ln\u00ed svalovou atrofi\u00ed zaplacen\u00ed DPH za nov\u00fd l\u00e9k ze Spojen\u00fdch st\u00e1t\u016f. \u0158ekla to ministryn\u011b financ\u00ed. Jedn\u00e1 se […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":24717,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-34023","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/34023","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=34023"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/34023\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/24717"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=34023"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=34023"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=34023"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}