Thread by @PkGollamudi

Respected @AndhraPradeshCM @ysjagan Sir, 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
@HariKrishnaCMO @RajivKrishnaS @ArogyaAndhra @DrArjasreekanth

Sir, from #AndhraPradesh no one knows how many children suffering with SMA. In social media found the below link,children parents from #Ongole are requesting help to procure the life saving medicine #ZolGenSMA

https://twitter.com/Vinayevox/status/1404989192346636288

@Vinayevox
@balineni_vasu @yvsubbareddymp

In India #ZolGenSMA Injection landed cost is 16 Crores plus 6 1//2 crores duties & taxes. 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. @ysjagan @AndhraPradeshCM @ArogyaAndhra

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.
@AndhraPradeshCM @ysjagan @ArogyaAndhra @HariKrishnaCMO @YSRCPDMO

Once children parents are able to source funds through crowd funding platform, to import the drug they are seeking help for import tax exemption from @FinMinIndia @nsitharaman @ianuragthakur @cbic_india
@curesmaindia @MoHFW_INDIA @drharshvardhan

INDIA NATIONAL POLICY FOR RARE DISEASES,2021 also not given proper details about the procurement / import policy for the life saving medicine #ZolGenSMA
main.mohfw.gov.in/sites/default/…
@AndhraPradeshCM @ysjagan @HariKrishnaCMO @RajivKrishnaS @ArogyaAndhra @DrArjasreekanth

Requesting @AndhraPradeshCM @ysjagan @HariKrishnaCMO 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

https://twitter.com/VTankha/status/1372179865491759107

@VTankha

Requesting @AndhraPradeshCM @ysjagan @HariKrishnaCMO using the dedicated #Volunteers @GSWSOfficial @VVWVOfficial please conduct a survey in #AP to know how many children are suffering with rare diseases including Spinal muscular atrophy (SMA).
@ChandruduIAS @RajivKrishnaS

Based on the survey results one can know how many
children are suffering with Spinal muscular atrophy (SMA) in #AndhraPradesh to take the action plan accordingly.
@AndhraPradeshCM @ysjagan @ArogyaAndhra @HariKrishnaCMO

https://twitter.com/Vinayevox/status/1404989192346636288

@Vinayevox @balineni_vasu

In our country, 800+ children suffering with Spinal Muscular Atrophy (SMA) and they are looking for Life saving medicine ZolGenSMA. No one knows how many children suffering with SMA in #AP
bit.ly/3h3Gsby
@AndhraPradeshCM @ysjagan @HariKrishnaCMO @RajivKrishnaS

@threadreaderapp unroll

@AndhraPradeshCM @ysjagan @HariKrishnaCMO
@RajivKrishnaS @VSReddy_MP @AvanthiSrinivas @RamMNK
Please help Raman @RamanNVSL Daughter #Khyati
#khyatifightssma @HelpKhyati who is seeking help to import medicine #ZolGenSMA

@AndhraPradeshCM @ysjagan @HariKrishnaCMO
@RajivKrishnaS @VSReddy_MP @AvanthiSrinivas @RamMNK
Please help Raman @RamanNVSL Daughter #Khyati
#khyatifightssma @HelpKhyati who is seeking help to import medicine #ZolGenSMA
linktr.ee/helpkhyati