Respected @KTRTRS would like to bring to your kind notice regarding children who are suffering with Spinal muscular atrophy (SMA) and looking for life saving medicine Zolgensma @Novartis
In India ZolgenSMA Injection landed cost is 16 Crores plus 6 1//2 crores duties & taxes.
In our country, 800+ children suffering with Spinal Muscular Atrophy (SMA) and they are looking for Life saving medicine ZolGenSMA. bit.ly/3h3Gsby
Sir, recently you extended your help for @FightsSma Ayansh and requested @nsitharaman @FinMinIndia @ianuragthakur for tax exemption of life saving medicine Zolgensma
Sir, from #Telangana no one knows how many children suffering with SMA. In social media found the below links where children parents are requesting help to procure the life saving medicine ZolgenSMA.
Children who are suffering with Spinal Muscular Atrophy (SMA), the children parents, relatives with the help of crowdfunding platforms raising money to procure ZolgenSMA Injection from Novartis US.
INDIA NATIONAL POLICY FOR RARE DISEASES,2021 also not given proper details about the procurement / import policy for the life saving medicine.
main.mohfw.gov.in/sites/default/…
Each and every time children parents can not ask @FinMinIndia @nsitharaman @ianuragthakur @cbic_india for tax exemption. Instead of that there should be a national wide procurement policy to import the medicine to save the little children.
@FightsSma
Children & parents feel helpless and they are not in a situation to afford 16 Crores plus 6 1//2 crores duties & taxes to procure the injection.
So, requesting @KTRTRS @TelanganaCMO @drgsrao to please take it to the notice of @MoHFW_INDIA @drharshvardhan @AshwiniKChoubey @PMOIndia @narendramodi @nsitharaman to draft a policy to procure / import the life saving injection ZolGenSMA.
@VTankha
@threadreaderapp unroll
Share this Scrolly Tale with your friends.
A Scrolly Tale is a new way to read Twitter threads with a more visually immersive experience.
Discover more beautiful Scrolly Tales like this.