Ntau tshaj li 450 tus neeg uas muaj tus kab mob tsis tshua muaj caj ces tsis tau txais imiglucerase rau ob rau rau lub hlis, raws li All-Lavxias Union ntawm Cov Neeg Mob. Tsis ntev los no, hauv tebchaws Russia, muaj ntau cov lus qhia ntau dua thiab luv luv ntawm ib lossis lwm qhov xav tau tshuaj sai. Qhov xwm txheej yuav tsum tau hloov pauv los ntawm tsoomfwv txoj cai, tsab qauv tau tsim los ntawm Ministry of Health. Nws muab lub zog rau Roszdravnadzor nrog cov cai los tswj cov ntim thiab ntau ntawm cov tshuaj los ntawm daim ntawv teev cov tshuaj tseem ceeb.
Cov ntawv no tau tshaj tawm nyob rau ntawm tsoomfwv lub chaw teeb tsa ntawm cov qauv kev cai lij choj; Seb qhov kev hloov pauv ntawm kev cai lij choj yuav daws qhov teeb meem nrog kev muab tshuaj, Parlamentskaya Gazeta tau tshawb nrhiav.
Qhov cuav los ntawm Crimea mus rau Amur
Rov qab rau Lub Ob Hlis 2020, Tus Thawj Kav Tebchaws Mikhail Mishustin tau hais kom ua kom muaj zog tiv thaiv ntau ntawm cov tshuaj. Tom qab ntawd nws tau muaj lub rooj sib tham txog kev txhim kho kev saib xyuas mob qog noj - cov kws kho mob yws rau thawj nom tswv txog kev cuam tshuam hauv kev muab cov tshuaj tua kab mob cancer thawj.
Tab sis teeb meem nrog rau tsis txaus cov tshuaj tseem ceeb tshwm sim tsis yog hauv cov neeg mob qog noj ntshav. Thaum kawg ntawm Lub Ob Hlis Ntuj xyoo no, Moscow Lub Koom Txoos ntawm Ntau Tus Kab Mob Sclerosis tau tshaj tawm tias cov tshuaj muaj tsis txaus rau qhov no thiab lwm cov kab mob autoimmune tau pom txij thaum lub caij nplooj zeeg xyoo 2020.
Tam sim no qhov teeb meem tseem tau cuam tshuam cov neeg mob nrog Gaucher, uas tib neeg lub cev tsis muaj enzyme uas tawg rog hauv cov rog. Yog hais tias tus neeg mob zoo li no tsis tau txais kev hloov kho enzyme, nws lub hlwb pib tuag.
Tsis ntev los no, cov neeg mob HIV thiab cystic fibrosis, nrog rau cov poj niam cev xeeb tub, tau yws yws txog qhov tsis muaj cov tshuaj tsim nyog. Nyob rau tib lub sijhawm, nws tsis tuaj yeem yuav cov ntsiav tshuaj tsim nyog yuav tsum ntawm tus nqi qis lossis tus nqi siab.
"Tam sim no muaj qhov xwm txheej zoo li no uas tus neeg tau txais txiaj ntsig tuaj yeem tos nws cov tshuaj rau ib hlis lossis ob hlis, thiab nws tsis muaj teeb meem dab tsi, piv txwv li, insulin," Aleksandr Petrov, tus tswvcuab ntawm Duma Committee ntawm Kev Tiv Thaiv Kev Noj Qab Haus Huv, hais rau Parlamentskaya Gazeta. - Lawv tsuas hais tias: tos. Thiab tsis muaj ib tus kws muag tshuaj xav kom xa cov ntaub ntawv tam sim ntawd tias cov tshuaj no tsis muaj rau”. Raws li tus Thawj Coj, lub xeev kev soj ntsuam yuav tsum tau ntxiv rau kev tswj hwm ntawm kev ua haujlwm ntawm cov tshuaj uas tam sim no ua los ntawm cov koom haum pej xeem. Qhov no yuav pab kom tsis txhob muaj mob qeeb rau kev muab tshuaj, feem ntau yog rau cov neeg tau txais txiaj ntsig.
Kev cuam tshuam nrog tshuaj, thiab ntev heev, kuj tseem sau cia los ntawm Roszdravnadzor nws tus kheej. Raws li lub chaw haujlwm tshaj tawm rau 2019, muaj teeb meem nrog kev muab cov tshuaj tseem ceeb tshwm sim hauv 15 thaj chaw - hauv thaj tsam Karelia, Crimea, Chuvashia, Ingushetia, Chechnya, Belgorod, Moscow, Tver, Yaroslavl, Leningrad, Pskov, Amur thiab Kemerovo, zoo li xws li tom Moscow thiab Petersburg.
Tus cim rov qab
Cov tshuaj twg ploj qhov twg, thiab txawm tias los ntawm cov npe tseem ceeb, - txhua lub sijhawm dhau los cov kws tshaj lij, cov neeg ua haujlwm, cov tuam txhab tsim khoom thiab cov neeg muag khoom tau sim txiav txim siab. Cov versions tau diverged.
Yog li, hauv Ministry of Industry thiab Trade, ib qhov laj thawj tau raug hu ua "tsis muaj kev tsim tsa cov kev xav kom cov tshuaj" thiab hu rau kev tswj hwm kev tswj hwm lub khw.
Cov neeg tsim khoom lag luam thiab cov muag khoom, ntawm qhov npau taws, txhaws rau ntau qhov kev tswj hwm rau qhov xwm txheej. Niaj hnub no, lub xeev tswj hwm tus nqi ntawm cov tshuaj tseem ceeb, thiab vim li ntawd, kev tsim thiab muag qee cov tshuaj lag luam tau ua tsis muaj txiaj ntsig rau kev lag luam.
"Txhua tus ntawm peb tau hla dhau qhov xwm txheej thaum koj mus rau lub tsev muag tshuaj, thov tshuaj rau ib puas rubles, thiab lawv qhia koj: tsis yog rau ib puas, tabsis muaj ib qho zoo sib xws rau plaub puas," Valery Ryazansky, Thawj Tus Lwm Thawj Coj ntawm Federation Federation Committee Pabcuam Txoj Cai Pabcuam Kev Cai, muab ua piv txwv.- Thiab kuv xav tias lub luag haujlwm ntawm Roszdravnadzor yog qhov tseeb los xyuas kom meej tias cov khw muag tshuaj tsis tau nqa nrog cov tshuaj kim, tab sis muab tag nrho cov kab ntawm cov tshuaj hauv Tshuag thiab ntawm tus nqi pheej yig. Ntawd yog, lawv, raws li kev tswj hwm saib xyuas, yuav tsum nug: yog vim li cas thiaj muaj cov tshuaj nyob hauv cov chaw muag tshuaj nyob ze, thiab muaj cov yeeb tshuaj zoo li no hauv cov chaw muag khoom, tab sis koj tsis? Thiab qhov no, ntawm chav kawm, yuav muaj txiaj ntsig zoo rau peb, cov neeg siv khoom."
Cov chaw muag khoom kuj tseem muaj lawv cov kev xav txog ntawm kev ua tsis tau. Lawv tau liam tias qhov teeb meem ntawm kev tsim kho tshiab kev kos npe tawm tshiab thaum Lub Xya Hli 1 ntawm xyoo tas los. Vim tias nws, 40 lab pob ntawm ntau dua 450 cov tshuaj sib txawv tsis tau nkag hauv lub tebchaws, cov kws tshaj lij hais.
"Daim ntawv lo tau tiag tiag ua rau qee yam tsis txaus siab rau lub khw muag tshuaj," tau lees paub Vladimir Krugly, tus tswvcuab ntawm Federation Council Committee ntawm Social Policy. "Nrog rau vim qhov no, cov lus nug tau tshwm sim txog kev tswj hwm muaj cov tshuaj: los ntsuam xyuas qhov twg thiab qhov twg cov khoom lag luam, txheeb xyuas qhov teeb meem, kom yuav khoom sai lossis rov faib cov khoom muaj tam sim no." Tus neeg sawv cev xaiv tseg tau paub tseeb tias qhov kev qhia ntawm kev saib xyuas tam sim no tshwj xeeb tshaj plaws, txij li txij thaum Lub Ob Hlis lub cim kev ua haujlwm, raug ncua vim muaj kev cuam tshuam rau lub Kaum Ib Hlis, tau rov ua haujlwm tiav.
Txog tam sim no, Roszdravnadzor tsuas yog tshuaj xyuas cov tshuaj kos npe. Txawm li cas los xij, cov tshuaj muaj nyob rau ntawm daim ntawv feem ntau tsis muaj nyob hauv cov chaw muag tshuaj thiab tsev kho mob. Lub zog tshiab yuav tso cai rau lub caj meem fai cov khoom siv tshuaj, kev cuam tshuam rau lub sijhawm kom tsis txaus.
Tswvyim cia
Hauv cov chaw muag tshuaj thiab tsev kho mob, yuav tau tsim cov tshuaj uas yuav tsim tau, uas yuav tsum tau txaus rau tsawg kawg yog rau lub hlis. Roszdravnadzor yuav nqa ua ke nyob rau hauv ib daim ntawv teev txhua yam tshuaj tsim nyob rau hauv Russia, mas tuaj rau hauv lub tebchaws, thiab khaws cia hauv tsev rau khoom. Tus nqi ntawm cov tshuaj muag lossis rhuav tshem yuav raug rho los ntawm cov ntim no, thiab tom qab ntawd cov nyiaj seem yuav muab piv nrog cov kev xav tau ntawm cov pejxeem. Yog tias nws hloov tawm tias qee cov tshuaj nyob hauv tsev muag tshuaj lossis tsev kho mob tsawg dua rau lub hlis, nws cov khoom lag luam yuav ntxiv rov qab - piv txwv li, lawv yuav raug thauj los ntawm lwm thaj chaw uas muaj tshuaj ntau nyob rau hauv cov tshuaj no. Yog tias qee cov tshuaj tsis nyob hauv Lavxias txhua lub sijhawm, nws yuav raug muag tawm txawv teb chaws.
"Kuv vam tias qhov kev qhia txog kev saib xyuas yuav ua rau peb xav tias ib zaug twg txoj kev xa tshuaj mus rau cov haujlwm tshwj xeeb ntawm cov pejxeem yuav tsum yog," sau tseg Alexander Alexander Petrov. - Qhov no yuav ua kom cov chaw taws teeb xa tshuaj sai sai, nrog rau kev ua kom zoo ntawm lub tshuab hluav taws xob puv, thiab tua tawm ntau lwm cov kev pib tseem ceeb, vim tias peb tuaj yeem hais tias lub chaw muab tshuaj nyob hauv Russia ua haujlwm zoo. Txog tam sim no, hmoov tsis zoo, peb tsis tuaj yeem hais qhov ntawd."
Nyuam qhuav pib, Parlamentskaya Gazeta tau tshaj tawm tias Lub Tsev Haujlwm Saib Xyuas Kev Noj Qab Haus Huv kuj tau npaj tsab cai tsoomfwv uas tso cai rau thaj chaw sib pauv cov tshuaj tseem ceeb nrog cov tshuaj muaj yeeb tshuaj uas tsis tau sau npe hauv tebchaws Russia. Cov ntawv no yuav tsum yog lub chaw saib xyuas kev noj qab haus huv hauv cheeb tsam xa cov ntaub ntawv txog cov tshuaj seem uas tsis tas yuav siv rau txhua lub hlis twg, lossis, hloov pauv, xa cov ntawv thov rau cov tshuaj ntxiv. Raws li cov ntaub ntawv no, cov tub ceev xwm yuav xa ib cov tshuaj uas tsim nyog los ntawm ib cheeb tsam mus rau lwm thaj chaw.
suav siv
Tsoomfwv VED cov npe tau raug kuaj xyuas los ntawm tseemfwv. Hauv tsab xov xwm kawg ntawm lub Kaum Ib Hlis 23, 2020, 25 tshuaj ntxiv rau nws. Tam sim no tag nrho tus naj npawb ntawm cov tshuaj tseem ceeb thiab tseem ceeb yog 788.