{"id":899,"date":"2012-05-31T21:26:07","date_gmt":"2012-05-31T19:26:07","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/chcu-farmaceuticke-firmy-pomoct-ludom-so-vzacnymi-ochoreniami-2\/201205"},"modified":"2014-01-04T19:11:19","modified_gmt":"2014-01-04T18:11:19","slug":"chcu-farmaceuticke-firmy-pomoct-ludom-so-vzacnymi-ochoreniami-2","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/chcu-farmaceuticke-firmy-pomoct-ludom-so-vzacnymi-ochoreniami-2\/899","title":{"rendered":"Chc\u00fa farmaceutick\u00e9 firmy pom\u00f4c\u0165 \u013eudom so vz\u00e1cnymi ochoreniami?"},"content":{"rendered":"

Vz\u00e1cne ochorenia so sebou spravidla prin\u00e1\u0161aj\u00fa v\u00e1\u017eny zdravotn\u00fd stav, znamenaj\u00faci v najlep\u0161om pr\u00edpade handicap, v najhor\u0161om bezprostredne ohrozuj\u00fa \u017eivot. V\u0161eobecn\u00e1 defin\u00edcia National Institutes of Health (NIH) je, \u017ee vz\u00e1cne ochorenie postihuje menej ako 200 000 \u013eud\u00ed (vz\u0165ahuje sa na popul\u00e1ciu USA, pozn. prekl.), pri\u010dom tak\u00fdchto ochoren\u00ed je takmer 7000. Niektor\u00e9 z\u00a0 roz\u0161\u00edrenej\u0161\u00edch s\u00fa muskul\u00e1rna dystrofia, cystick\u00e1 fibr\u00f3za a mnohopo\u010detn\u00e1 skler\u00f3za, ale niektor\u00e9 in\u00e9 postihuj\u00fa na celom svete iba nieko\u013eko desiatok \u013eud\u00ed*. Ve\u013ek\u00e1 v\u00e4\u010d\u0161ina vz\u00e1cnych ochoren\u00ed je genetick\u00e9ho p\u00f4vodu, zapr\u00ed\u010dinen\u00e1 mut\u00e1ciou jedn\u00e9ho alebo viacer\u00fdch g\u00e9nov.<\/p>\n

A\u017e doned\u00e1vna bol v\u00fdskum liekov na lie\u010dbu vz\u00e1cnych ochoren\u00ed viacmenej dom\u00e9nou mal\u00fdch biotechnologick\u00fdch firiem. V\u00e4\u010d\u0161ie spolo\u010dnosti sa vz\u00e1cnym ochoreniam vyh\u00fdbali, zameriavali sa na potreby ochoren\u00ed s v\u00e4\u010d\u0161\u00edmi popul\u00e1ciami pacientov ako rakovina, Alzheimerova choroba a cukrovka. Tieto v\u00e4\u010d\u0161ie po\u010dty potenci\u00e1lnych pacientov im mali teoreticky prinies\u0165 pri nov\u00fdch, efekt\u00edvnych liekoch vy\u0161\u0161ie zisky. Predpokladalo sa, \u017ee vzh\u013eadom na to, \u017ee popul\u00e1cie pacientov s\u00fa mal\u00e9, nemaj\u00fa schopnos\u0165 generova\u0165 tak\u00fd tok pr\u00edjmov. Liek ur\u010den\u00fd iba pre 1000 pacientov nemohol by\u0165 tak potenci\u00e1lne lukrat\u00edvny ako ten, ktor\u00fd je ur\u010den\u00fd pre 10 mili\u00f3nov.<\/p>\n

\"201205312125_farm1\"<\/div>\n

Av\u0161ak biotechnologick\u00e9 firmy, ktor\u00e9 vyvinuli tieto \u017eivot zachra\u0148uj\u00face lieky\u00a0 zistili, \u017ee s\u00fa schopn\u00e9 za ne \u00fa\u010dtova\u0165 mimoriadne vysok\u00e9 ceny, stali sa z\u00e1sadn\u00fdmi zdrojmi pr\u00edjmov. Dobr\u00fdm pr\u00edkladom je Cerezyme od spolo\u010dnosti Genzyme ur\u010den\u00fd na lie\u010dbu Gaucherovej choroby, genetick\u00e9ho ochorenia ovplyv\u0148uj\u00faceho vn\u00fatorn\u00e9 org\u00e1ny. Cerezyme je mimoriadne \u00fa\u010dinn\u00fd \u2013 ale z\u00e1rove\u0148 extr\u00e9mne drah\u00fd, ke\u010f ro\u010dn\u00e1 lie\u010dba jedn\u00e9ho pacienta stoj\u00ed 300 000 dol\u00e1rov. V\u00fdsledkom je, \u017ee pri tejto cene presiahla hodnota ro\u010dn\u00fdch predajov Cerezyme 700 mili\u00f3nov dol\u00e1rov \u2013 slu\u0161n\u00fa sumu pre ak\u00fdko\u013evek liek. \u00daspech Genzyme zaujal ve\u013ek\u00e9 farmaceutick\u00e9 spolo\u010dnosti. V skuto\u010dnosti bol Genzyme minul\u00fd rok odk\u00fapen\u00fd spolo\u010dnos\u0165ou Sanofi. Farmaceutick\u00e9 spolo\u010dnosti ako Pfizer a GlaxoSmithKline zriadili vlastn\u00e9 v\u00fdskumn\u00e9 oddelenia pre h\u013eadanie lie\u010dby pre vz\u00e1cne ochorenia. Zrazu nebol farmaceutick\u00fd v\u00fdskum vz\u00e1cnych ochoren\u00ed v\u00fdlu\u010dn\u00fdm pre biotechnologick\u00e9 firmy.<\/p>\n

Tento v\u00fdvoj je v\u00edtan\u00fd pre pacientov so vz\u00e1cnymi ochoreniami a ich rodiny. Av\u0161ak t\u00edto \u013eudia s\u00fa so vstupom ve\u013ek\u00fdch farmaceutick\u00fdch firiem do oblasti vz\u00e1cnych ochoren\u00ed z\u00e1rove\u0148 ostra\u017eit\u00ed. V\u00fdsti\u017ene to vo svojom blogu \u201eSaving Case<\/a>\u201c vystihla Melissa Hogan. Jeden zo synov pani Hoganovej, Case, trp\u00ed mukopolisacharid\u00f3zou (MPS). MPS je zapr\u00ed\u010dinen\u00e1 genetickou mut\u00e1ciou kv\u00f4li ktorej sa u pacientov nem\u00f4\u017ee tvori\u0165 enz\u00fdm iduron\u00e1t sulfat\u00e1za, potrebn\u00e1 v odb\u00faran\u00ed polysacharidov. Ne\u00fapln\u00e9 odb\u00faranie vedie k hromadeniu t\u00fdchto l\u00e1tok v bunk\u00e1ch, \u010do sp\u00f4sobuje progres\u00edvne fyzick\u00e9 a ment\u00e1lne po\u0161kodenie. Mysl\u00edm, \u017ee tri z jej \u0161tyroch pripomienok nie je \u0165a\u017ek\u00e9 naplni\u0165:<\/p>\n

Transparentnos\u0165 \u2013 hovor\u00ed, \u017ee farmaceutick\u00e9 spolo\u010dnosti by mali by\u0165 otvoren\u00e9 a \u00faprimn\u00e9 oh\u013eadom dosiahnut\u00fdch \u00faspechov, alebo ne\u00faspechov v tejto oblasti. Aby pacienti boli medzi prv\u00fdmi, kto sa o tom dozvie, nie aby sa k inform\u00e1ci\u00e1m dost\u00e1vali n\u00e1hodne a boli potom\u00a0 nimi zasko\u010den\u00ed. Mysl\u00edm, si \u017ee toto sa d\u00e1 \u013eahko naplni\u0165.<\/p>\n

Spolupatri\u010dnos\u0165 – \u201cChceme vedie\u0165, \u017ee v\u00e1m z\u00e1le\u017e\u00ed na na\u0161ich de\u0165och, \u017ee v\u00e1m ako \u013eudia nie s\u00fa \u013eahostajn\u00ed, bez oh\u013eadu na to \u010di im pred\u00e1vate va\u0161e lieky alebo nie\u201c. Nielen, \u017ee si mysl\u00edm, \u017ee je to uskuto\u010dnite\u013en\u00e9, bolo by pr\u00ednosn\u00e9 pre tieto spolo\u010dnosti pozva\u0165 \u013eud\u00ed ako pani Hoganov\u00fa na n\u00e1v\u0161tevu ich v\u00fdskumn\u00fdch laborat\u00f3ri\u00ed, aby sa vz\u00e1jomne obozn\u00e1mili so svojimi pr\u00edbehmi. Tak\u00e1 sk\u00fasenos\u0165 m\u00f4\u017ee by\u0165 mimoriadnou motiv\u00e1ciou\u00a0 pre vedcov. A naopak, ak z\u00e1stupcovia pacientov vidia odhodlanie v\u00fdskumn\u00edkov, je to rovnako odme\u0148uj\u00face.<\/p>\n

Partnerstvo \u2013 Pani Hoganov\u00e1 vyslovila obavu, \u017ee ve\u013ek\u00e9 farmaceutick\u00e9 firmy m\u00f4\u017eu ma\u0165 pr\u00edstup \u201csme tu aby sme v\u00e1m pomohli, vieme \u010do je pre v\u00e1s najlep\u0161ie\u201c. Preto \u017eiada farmaceutick\u00e9 firmy aby brali pacientov a ich rodiny v tomto procese ako partnerov. T\u00e1to po\u017eiadavka m\u00e1 ve\u013ek\u00fd zmysel, preto\u017ee podpora pacientskych skup\u00edn bude ve\u013emi potrebn\u00e1 pri spolupr\u00e1ci na klinick\u00fdch \u0161t\u00fadi\u00e1ch nevyhnutn\u00fdch pre z\u00edskanie povolen\u00ed na uvedenie na trh, akcept\u00e1ciu lek\u00e1rmi. A nakoniec je \u0165a\u017ek\u00e9 si predstavi\u0165, \u017ee by platitelia v syst\u00e9moch zdravotn\u00e9ho poistenia akceptovali v\u00fddavky na mimoriadne drah\u00e9 lieky, ak by\u00a0 samotn\u00e9 pacientske organiz\u00e1cie mali k nim skeptick\u00fd postoj.<\/p>\n

\"201205312126_farm2\"<\/div>\n

Av\u0161ak je tu jedna obava pani Hoganovej, o ktorej si aj ja mysl\u00edm, \u017ee je opodstatnen\u00e1.<\/p>\n

\u201cChceme vidie\u0165, najm\u00e4 u ve\u013ek\u00fdch farmaceutick\u00fdch firiem, na ktor\u00e9 sa niektor\u00ed m\u00f4\u017eu pozera\u0165 ako na k\u0161eft\u00e1rov be\u017eiacich za posledn\u00fdmi zdrojmi vysok\u00fdch ziskov pri tom ako ich vytl\u00e1\u010da konkurencia generick\u00fdch firiem, \u017ee vstup do tejto oblasti nie je pre nich iba vidinou pe\u0148az\u00ed. Chceme vedie\u0165, \u017ee ak je v\u00fdskum n\u00e1ro\u010dnej\u0161\u00ed a trv\u00e1 dlh\u0161ie, ak bude narasta\u0165 konkurencia, \u017ee s\u00fa odhodlan\u00ed pokra\u010dova\u0165. Radi by sme videli pochopenie, \u017ee odhodlanie neznamen\u00e1 iba ponuku medic\u00ednskeho produktu, ale pomoc pre zlep\u0161enie \u017eivota na\u0161ich det\u00ed a produkt je iba \u010das\u0165ou z toho. Preto\u017ee to nie je z\u00e1v\u00e4zok vo\u010di n\u00e1m, ale z\u00e1v\u00e4zok na\u0161im de\u0165om.\u201c<\/p>\n

Hoganovej obavy s\u00fa zrejm\u00e9. Ve\u013ek\u00e9 farmaceutick\u00e9 firmy pri\u0161li neskoro ku \u201ckol\u00e1\u010du\u201c vz\u00e1cnych ochoren\u00ed, v skuto\u010dnosti ich tam pril\u00e1kal finan\u010dn\u00fd \u00faspech mal\u00fdch firiem s drah\u00fdmi liekmi. Nem\u00e1m obavu o to, \u017ee ve\u013ek\u00e9 farmaceutick\u00e9 firmy zistia, \u017ee v\u00fdskum vz\u00e1cnych ochoren\u00ed bude n\u00e1ro\u010dnej\u0161\u00ed a dlh\u0161\u00ed ako pri liekoch pre naj\u010dastej\u0161ie ochorenia. V skuto\u010dnosti, by niekto\u00a0 mohol namieta\u0165, \u017ee to m\u00f4\u017ee by\u0165 aj jednoduch\u0161ie (na klinick\u00e9 \u0161t\u00fadie je potrebn\u00fdch menej pacientov, trvaj\u00fa krat\u0161ie). Moja obava pramen\u00ed z toho, \u017ee s\u00fa\u010dasn\u00e9 ceny liekov pri vz\u00e1cnych ochoreniach nie s\u00fa udr\u017eate\u013en\u00e9. Ke\u010f pr\u00edde na trh viacero nov\u00fdch liekov, bude pre vl\u00e1dy a poskytovate\u013eov zdravotnej starostlivosti zlo\u017eit\u00e9 hradi\u0165 n\u00e1klady. V\u00fdsledkom m\u00f4\u017ee by\u0165 regul\u00e1cia cien (tak ako sa v s\u00fa\u010dasnosti mimo USA u\u017e uplat\u0148uje). T\u00e1 zn\u00ed\u017ei pr\u00edjmy, ktor\u00e9 m\u00f4\u017eu farmaceutick\u00e9 spolo\u010dnosti o\u010dak\u00e1va\u0165 od t\u00fdchto liekov. Ak sa zn\u00ed\u017eia mar\u017ee zisku\u00a0 pre tieto lieky, bud\u00fa sa ve\u013ek\u00e9 farmaceutick\u00e9 firmy na\u010falej anga\u017eova\u0165 vo vz\u00e1cnych ochoreniach? Mali by chcie\u0165.<\/p>\n

Farmaceutick\u00e9 spolo\u010dnosti m\u00f4\u017eu z\u00edska\u0165 z\u00e1v\u00e4zkom ku vz\u00e1cnym ochoreniam ve\u013ea spolo\u010denskej priazne (\u201cgoodwill\u201c), nie\u010do, \u010do naliehavo potrebuj\u00fa. \u00daspechy vo v\u00fdskume v\u00a0 tejto oblasti bud\u00fa pre ak\u00fako\u013evek farmaceutick\u00fa firmu p\u00fdchou. Mali by plne podpori\u0165 pacientske organiz\u00e1cie tvrdo pracuj\u00face pre pacientov so vz\u00e1cnymi ochoreniami a poskytn\u00fa\u0165 in\u00fa formu pomoci v oblastiach kde liekov\u00e1 terapia nie je mo\u017en\u00e1. Navy\u0161e m\u00f4\u017eu svoje v\u00fdskumn\u00e9 centr\u00e1 pre vz\u00e1cne ochorenia vyu\u017ei\u0165 pre stretnutia\u00a0 \u0161pi\u010dkov\u00fdch vedcov z cel\u00e9ho sveta, v\u00fdmenu poznatkov pri semin\u00e1roch a predn\u00e1\u0161kach. To by prinieslo mimoriadnu motiv\u00e1ciu, nie len pre vedcov, ale v\u0161etk\u00fdch zamestnancov firmy. Nie len, \u017ee by to bolo dobr\u00e9 pre biznis, ale rovnako pre firemn\u00fa kult\u00faru a mor\u00e1lku.<\/p>\n

* Melnikova, Nature Reviews Drug Discovery, Vol. 11, 267-268, April 2012<\/a><\/em><\/p>\n

John LaMattina, b\u00fdval\u00fd prezident oddelenia v\u00fdskumu a v\u00fdvoja v spolo\u010dnosti Pfizer<\/em><\/p>\n

Forbes.com<\/a> 2. m\u00e1ja 2012
\n<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Vzácne ochorenia so sebou spravidla prinášajú vážny zdravotný stav, znamenajúci v najlepšom prípade handicap, v najhoršom bezprostredne ohrozujú život. Všeobecná definícia National Institutes of Health (NIH) je, že vzácne ochorenie postihuje menej ako 200 000 ľudí (vzťahuje sa na populáciu … Continued<\/a><\/p>\n","protected":false},"author":7,"featured_media":1172,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[3],"tags":[],"class_list":["post-899","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-lieky-a-liecba"],"yoast_head":"\nChc\u00fa farmaceutick\u00e9 firmy pom\u00f4c\u0165 \u013eudom so vz\u00e1cnymi ochoreniami? - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"Vz\u00e1cne ochorenia so sebou spravidla prin\u00e1\u0161aj\u00fa v\u00e1\u017eny zdravotn\u00fd stav, znamenaj\u00faci v najlep\u0161om pr\u00edpade handicap, v najhor\u0161om bezprostredne ohrozuj\u00fa \u017eivot.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/slanedeti.sk\/cms\/chcu-farmaceuticke-firmy-pomoct-ludom-so-vzacnymi-ochoreniami-2\/899\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Chc\u00fa farmaceutick\u00e9 firmy pom\u00f4c\u0165 \u013eudom so vz\u00e1cnymi ochoreniami? 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