Mumbai: Baby Aakriti gets first dose of paid meds

Aakriti Singh a 16monthold who has been battling Spinal Muscular Atrophy SMA Type1 finally got her first bottle of paid medicine on Thursday It was procured for her by KEM hospital at a cost of Rs 58 lakh from a multinational corporation pharma company that started its India operation recently One bottle will last 37 daysAakritirsquos parents are excited that they will be able to see their daughter stand on her feet in the next six months without any health complicationsMumbai has a caring heartldquoThe annual cost of the medication is between Rs 34 lakh to Rs 36 lakh and we have received great support from Good Samaritans midday readers A Mumbaibased corporate house with diversified business interests donated Rs 5 lakh recently under their CSR programme and Rs 2 lakh was contributed by another midday reader earlier Another Rs 50000 was donated by the chief ministerrsquos office We also received around Rs 2 lakh through crowdfunding portalsrdquo said Kirti Singh the mother of Aakriti who lives in CBD BelapurThe amount received is not even half of the funds required annually Rs 34Rs 36 lakh but it showed that ldquoMumbai has a caring heartrdquo Aakritirsquos mother saidmidday through a series of reports had highlighted the familyrsquos plight Her parents have written to the chief minister and both DCMs but havenrsquot received any other assistance The funds from the CMrsquos office were released after a midday report on January 4 titled lsquoParents plead with deputy CM for funds to save their childrsquo highlighted that the lifesaving drugmdashto be administered every 37 daysmdashcosts over R6 lakh per doseA subsequent reportmdashlsquoDonor CMO send aid for baby with rare diseasersquomdashdated January 24 highlighted how an anonymous donor sent Rs 2 lakh and the CMrsquos office sent Rs 50000 for Aakritirsquos medication But her parents are still worried as they are way short of their target of Rs 34 lakhPay for two bottles at a timeAccording to Kirti Aakriti received her first bottle of paid medicine on February 22 ldquoWe have to pay for two bottles which would cost around Rs 12 lakh The original cost of each dose is Rs 62 lakh but since KEM hospital is also helping the price works out to be lower If we procure two doses we will be eligible to get another three doses under the company lsquocompassionate programmersquo for no additional costrdquo Kirti saidNot a solutionhellipHowever Kriti is aware that the donations are not a permanent solution ldquoWe realise this is not a longterm solution The thought of how long people will continue to donate is something that worries me and my husbandrdquo Kriti questioned adding that the government needs to interveneRemove GSTAkritirsquos mother further asserted that the government has imposed 12 per cent GST on such a crucial lifesaving medicine and this additional charge needs to the scrapped in the larger interest of children suffering from SMA and other rare diseasesGrateful to midday readersldquoWe are grateful to midday readers who came forward and helped us financially and gave a new lifeline to our daughter We request the Maharashtra government to hear our plea and help Aakriti live a quality liferdquo Kriti saidlsquoGovt intervention mustrsquoAlpana Sharma founder of Cure SMA Foundation whose son is being treated for SMA Type2 said ldquoWe are extremely grateful to midday that a few SMA cases like those of baby Teera Aayansh and Aakriti getting highlighted in the media Generous hands come forward to help But not every post about fundraising can go viral on social media platforms and the treatment for all SMA patients cannot come through fundraising We request the government with folded hands to intervenerdquoAccording to Sharma the only sustainable solution can come through government intervention and supportldquoIt is high time that the government should make lasting attempts and changes at the institutional level for SMA and other rare disease patients The Delhi High Court has also observed that the efforts for crowd funding for treatment of SMA DMD Duchenne Muscular Dystrophy and other rare diseases have not yielded sustainable results as the issue does not appear to have gained enough importance in society in generalrdquo she concludedRs 36LApprox annual cost of medicine