Kashoma #zvirwere: Kana kubvumidzwa kwekushambadzira hakuna kukwana

Varwere vezvirwere zvisingawanzo muEurope vakawedzera mukupera kwaZvita mushure meboka renyanzvi dzeEuropean Medicines Agency (EMA). yakakurudzirwa mishonga minomwe yekutenderwa, kusanganisira miviri mishonga yenherera, kuunza varwere pedyo nesarudzo itsva dzekuderedza huwandu hwemamiriro ezvinhu akakomba.

Dare racho rakakurudzira kupa mvumo yekushambadzira yeAlofisel, iyo inobata kuomarara kwakakomba kunokonzerwa nechirwere cheCrohn, uye yakasimbisa mvumo ine mirau yeCrysvita, kurapwa kwekutanga kwechirwere chakakomba, chinofambira mberi chepfupa chinonzi X-yakabatana hypophosphatemia. Kutevera kurudziro yekutanga, mishonga iyi inogona kutarisira kuwana mvumo yekupedzisira yekushambadzira kutanga kwegore rinouya.

Kune vekuEurope vanga vakamirira nechido chisarudzo chedare, chiitiko ichi ndicho chikonzero chetariro. Asi zvichiri kukurumidza kupemberera, sezvo mvumo yekushambadzira isingakwane kuti vawane marapiro aya. Chokwadi, kugona kwavo kutora mishonga iyi kunoenderana nekuti hurumende dzenyika dzakabvumidza here kuti mushonga uyu ubatanidzwe muhutano hweveruzhinji nezvimwe zvirongwa zveinishuwarenzi, izvo zvisina kupihwa.

Kukosha kwekubvumidza mishonga iyi yekuvhara chimwe chinhu icho spinal muscular atrophy (SMA) varwere vese vanonyatsoziva. Muna Zvita 2016, iyo US Food and Drug Administration (FDA) akabvumidzwa Spinraza, mushonga wekutanga weSMA - chirwere chenhaka icho inokanganisa zvingangoita 1 mu10,000 vanozvarwa vapenyu, zvinokonzeresa kuderera kwemhasuru, uye ndiyo inotungamira chikonzero chekufa kwevacheche. Muna June 2017, iyo EMA yakapiwa kuwanikwa kwemusika kweSpinraza. Nhasi, zvakadaro, varwere vazhinji veEuropean SMA havasati vakwanisa kuwana mushonga, sezvavanomirira kuti vaone kana hurumende dzavo dzichitendera kudzoserwa.

Magirazi emadziro anoramba akamira pakati pevanorwara neSMA uye mushonga wega unogona kurapa mamiriro avo inyaya yechenjedzo, uye yambiro kune varwere vangangorumbidza EMA ichangoburwa yemvumo. Huwandu hunofungidzirwa hwemamiriyoni makumi matatu evarwere vezvirwere zvisingawanzo kuitika muEU nemhuri dzavo vanosimbirira kuti hurumende dzinoda kuzvipira kutora danho rekupedzisira kana vakakoshesa kuita kuti mishonga iwanikwe kune vese.

Ehe, nharo dzakatenderedza marudzi aya emishonga isingawanzo kurwara dzinowanzozara. Kune rimwe divi, vatsoropodzi vanobvunza kuti sei hurongwa hwehutano hweveruzhinji hweEurope huchifanira kuvhara marapiro ezvirwere zvinobata chikamu chidiki chehuwandu. Ukuwo, varwere vanosara vachinetseka kuti sei vachinyimwa kuwana mishonga inogona kureva musiyano pakati pehupenyu nerufu.

Kune varwere veSMA, matanda acho akakwira zvakanyanya. Kambani yeUS biotechnology payakatanga kushambadzira Spinraza, yakarumbidzwa senzira yekurapa iyo kusvika zvino yaonekwa sechirwere chinopedza simba zvachose - uye mutongo werufu zvakanyanya. Spinraza yakaratidza kubatsira varwere kudzoreredza mabasa makuru emota sekugara, kumira, uye kufamba vakazvimiririra uye kuvandudza zvinoshamisa huwandu hwekupona.

Ikozvino, varwere veSMA muEurope mose vakamirira kuti vaone kana zviremera zvavo zvehutano zvichabatanidza mushonga mumishonga yavo inogamuchirwa (uye yakavharwa). Mamiriro ekunze ekusavimbika kwave kukanganisa varwere vazhinji: semuenzaniso, mudiki weBritish achangobva kunyimwa mukana weSpinraza nekuda kweNHS red tape, kunyangwe mutengo wemushonga wacho waive. akafukidza nechipatara chemunharaunda.

Parizvino, Itari uye Siwidheni ndidzo chete nyika dzakaita kuti Spinraza iwanikwe kune vese varwere kuburikidza nehurongwa hwehutano hwenyika, zvisinei nezera, kugona kushanda, kana SMA rudzi. Dzimwe nhengo dzeEU, kusanganisira Speini, Furanzi, kuUK,  vari mushishi rekufunga kuti vobvumira here Spinraza yekuvhara. Nechekare, zvinosuruvarisa, Noweyi uye Dhenimaki vanonoka kubvumidza mushonga kuti udzoserwe, zvichikanganisa varwere veSMA nemhuri dzavo.

Avo vanopokana nekuwedzera mvumo yemushonga vanotarisa zvakanyanya pamutengo, vachibvunza kuti sei masevhisi ehutano achifanira kupa mari kurapwa kwezvirwere zvinobata vanhu vashoma. Asi hutano hweveruzhinji huri pachena.

Kune imwe, mishonga yakadai inosarudzwa 'kurapa kwechirwere chisingawanzo' nechikonzero. Kuvagadziri, kugadzira mishonga ine chinangwa chekurapa chikamu chidiki chevanhu kune zvishoma zvinokurudzira hupfumi. Nekuda kweizvozvo, EU - pamwe nevakuru vehutano muUS nedzimwe nyika - inopa rubatsiro, kusarudzwa kwemusika, uye zvimwe zvinokurudzira kukurudzira makambani emishonga kuti agadzire marapiro ezvirwere zvisingawanzo. IEU hairevi mashoko ayo mukugadzirisa a nzvimbo yakajeka pamubvunzo uyu, vachitaura kuti "varwere vanorwara nezvirwere zvisingawanzo kukodzera kurapwa kwakafanana nevamwe varwere mukati meEuropean Union."

Kune imwezve, hazvirambike kuti munhu anogona kubatsira zvakanyanya kuhupfumi - uye kutora zvakawanda kubva muhupenyu - kana vachinge vakwanisa kuita mabasa akakosha asina kubatsirwa. Spinraza - senge ichangobva kubvumidzwa Alofisel neCrysvita uye kumwe kurapwa kwechirwere chisingawanzo - inobvumira varwere kuti vapfurwe panguva yakajairika. Mukati meupenyu hwose, ipapoka, mari inochengetwa kupfurikidza nokuita kuti vanorwara nehosha isingawanzowaniki vazvimirire zvikuru kupfuura mutengo womumwe chete wemishonga iyi.

Isu tinorarama muzera iro sainzi nemishonga zvinogona kuita zvakanyanya kupfuura nakare kose, asi chete kana hurumende dzeEurope dzikakwanisa kudzikamisa pakati pekukanganisa kwezvinodhaka zvechirwere zvisingawanzo uye zvipingaidzo zvekugara zvakanaka kwevanhu. With zvimwe kurapa kwechirwere chisingawanzo chaitika kupfuura nakare kose, vakuru vakuru vehutano hweveruzhinji pasina mubvunzo vachasangana nematambudziko aya kazhinji kazhinji. Asi chisungo chehunhu kuhurumende chakajeka: kutsigira tsvakiridzo yesainzi - uye kudzikisira mitengo yehutano hwenyeredzi kune avo vakabatwa nezvirwere zvisingawanzo famba munzira - zvinoita kuti zvive zvakakosha kutora danho rekupedzisira uye kuvharira kumashure kwemhando idzi dzemishonga.

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