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Mohon Bantuan Rakyat Malaysia, Aleena Suraya Dan Sufi Syafrina Perlukan Ubat Genetik Zolgensma Berharga RM18 Juta
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Kalau ini melibatkan public fund memang kena compare. In case ada yang lupa, 9 juta is a lot of money.
Tapi kalau duit sendiri, sukati lah.
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Makcik bergurau kan doa company tu bungkus?
Mesti ada sebab yang legit mengapa ubat ini sebegitu mahal. Sekurang2nya penawar itu ada. Kita tunggu ja lah patent expire kot2 keluar ubat generic made in India nanti boleh diskaun jadi sejuta. Still kena jual tanah, jual rumah juga nanti.
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Kalau nak wajibkan sekali test RM1k darab say 15 juta rakyat overall cost to the system dah RM15 billion.
Baik gomen beli ja ubat tu.
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Takde makna lah cari guna drone sampai 9 juta. Helikopter pun dah murah orang buat hantar anak gi sekolah ja.
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cikrosienona replied at 17-6-2023 09:47 PM
Boleh... boleh detect dr masa mengandung lagi.., boleh buat melalui non-invasive test dgn cara ami ...
owh bagusla kalau blh detect awal
blh masuk dlm planning hidup individu dan kursus kawen la pasal benda² mcmni
pasal jangka hayat tu kalau xsilap i dia kena dpt ubat yg 9 juta ni sblm umur 2thn, kalau x dia akan hidup bergantung dgn mesin atau meninggal dunia cmtu sbb kegagalan muscle dan organ
cuma kalau test² talasemia dan genetic cmni blh diwajibkan, lebih mudah dan kurang risiko sakit ni la.
iols kesian sgt la kt budak yg sakit cmtu..
mcm u, bila u buat test tu? buat saja² je ke atau mmg ada sbb nak buat?
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Mahalnya ubat tu. Ubat tu diperbuat drp apa yg mahal sgt tu? |
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haha yela the parents lah kena buat decision bila dah tau results, nak jaga ke nak terminate ke...
bukan ke lagi better tau dah ada penyakit awal2, so senang nak prepare mental and physical jaga anak sakit.. boleh cari ilmu awal macam nak care bila anak lahir...
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ntah lah...tak tau la diorang ni memang ada dalam situasi yang anak diorang lahir2 dah sakit atau tak... I selalu terfikir, mcm mana laa the kid nak survive kalau parents dah xde? byk kes abuse terjadi bila parents dah pass away. mcm mana kita trust org lain untuk jaga xkan sama macam parents jaga anak sendiri.
lagi pun, kita yang lahir sihat walafiat ni pun kdg2 ada fasa hidup ni susah, mcm mana dgn diorg? xdpt bygkan 
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no lah, wajibkan genetic test ni kat ibu mengandung.. genetic test tu boleh test mcm2 bukan SMA je, down syndrome, edward syndrome, cystic fibrosis etc... so parents have knowledge before anak lahir.. after birth plan tu, terpulang pada parents nak decide
xkn la 15 juta ibu mengandung tiap2 tahun2 kan? haha
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otai_g replied at 18-6-2023 04:58 PM
Mahalnya ubat tu. Ubat tu diperbuat drp apa yg mahal sgt tu?
Tk de pulak umah yg tanya ubat tu halal ke idok, ada tanam chip ke dlm badan, esok ni jd zombie tak lps guna.
Masa vaksin kemain masing² bg pendapat tk nak cucuk hahahah |
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I xsure about success rate but kalau x silap treatment tu kena start before babies 6 months old, sbb after 6 months old... babies with SMA dah hilang more than 80% neuron rate.
I buat masa pregnant sbb my age is high risk for pregnancy (35+), I concern for down syndrome... Alhamdulillah no DS detection but I found out this SMA thing...
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rasenye gov mmg patut wajibkan test ni la. mcm thalassemia kt sekolah iols baru tau budak form 4 wajib buat testkan atlest kt putrajaya ni la semua sek dh wajib test. moga dimudahkan family anak ni. |
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ummah kalau boleh tiap2 tahun nak mengandung chuols.... selagi anak x mcm pasukan bola...selagi tu beranak 
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kepompong replied at 17-6-2023 09:33 AM
ops btw… yg dah sampai ke bulan pun.. angkasawan tu… apa sumbangan /research yg dia buat @ usahaka ...
Busy buat anak lepas tu achievement dia adalah berapa banyak anak bini dia hamilkan. Rasanya operator kilang lagi banyak membantu ekonomi negara drpd si angkawasan ni |
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owh age35+ da dikira high risk pregnancy ya?
ingatkan 40+
brp rm test tu?
kalau kes mcmnikan bila test dan detect baby yg dikandung akan ada SMA
adakah doktor akan advice utk gugurkan?
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Decaffeinated replied at 18-6-2023 12:45 PM
Makcik bergurau kan doa company tu bungkus?
Mesti ada sebab yang legit mengapa ubat ini sebegitu ...
Mungkin juga ubat tu mahal sebab kos research ubat tu mahal jugak, mana tahu masih belum balik modal
ke |
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Tok Uban Sarawak yg katanya dah nak mampos tu patutnya sedekahkan sebahagian harta billion2 dia tu kat pesakit2 camni.... Mana tau boleh ringankan sikit azab di Sana kelak. Duit berbilion pun bukan boleh tahan kematian pun..... Buat bergaduh anak beranak je berebut harta. |
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Post time 18-6-2023 12:37 PM
