Aakriti Singh, a 16-month-old, who has been battling Spinal Muscular Atrophy (SMA) Type-1, finally got her first bottle of paid medicine on Thursday. It was procured for her by KEM hospital, at a cost of Rs 5.8 lakh from a multinational corporation pharma company that started its India operation recently. One bottle will last 37 days.

Aakriti’s parents are excited that they will be able to see their daughter stand on her feet in the next six months, without any health complications.

Mumbai has a caring heart

“The annual cost of the medication is between Rs 34 lakh to Rs 36 lakh, and we have received great support from Good Samaritans (mid-day readers). A Mumbai-based corporate house with diversified business interests donated Rs 5 lakh recently under their CSR programme and Rs 2 lakh was contributed by another mid-day reader earlier. Another Rs 50,000 was donated by the chief minister’s office. We also received around Rs 2 lakh through crowdfunding portals,” said Kirti Singh, the mother of Aakriti, who lives in CBD Belapur.

The amount received is not even half of the funds required annually (Rs 34-Rs 36 lakh), but it showed that “Mumbai has a caring heart”, Aakriti’s mother said.

mid-day, through a series of reports, had highlighted the family’s plight. Her parents have written to the chief minister and both DCMs, but haven’t received any other assistance. The funds from the CM’s office were released after a mid-day report on January 4 titled, ‘Parents plead with deputy CM for funds to save their child’ highlighted that the lifesaving drug—to be administered every 37 days—costs over R6 lakh per dose.

A subsequent report—‘Donor, CMO send aid for baby with rare disease’—dated January 24, highlighted how an anonymous donor sent Rs 2 lakh and the CM’s office sent Rs 50,000 for Aakriti’s medication. But her parents are still worried as they are way short of their target of Rs 34 lakh.

Pay for two bottles at a time

According to Kirti, Aakriti received her first bottle of paid medicine on February 22. “We have to pay for two bottles, which would cost around Rs 12 lakh. The original cost of each dose is Rs 6.2 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 ‘compassionate programme’ for no additional cost,” Kirti said.

Not a solution…

However, Kriti is aware that the donations are not a permanent solution. “We realise this is not a long-term solution. The thought of how long people will continue to donate is something that worries me and my husband,” Kriti questioned, adding that the government needs to intervene.

Remove GST 

Akriti’s 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 diseases.

Grateful to mid-day readers

“We are grateful to mid-day 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 life,” Kriti said.

‘Govt intervention must’

Alpana Sharma, founder of Cure SMA Foundation, whose son is being treated for SMA Type-2, said, “We are extremely grateful to mid-day 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 intervene.”

According to Sharma, the only sustainable solution can come through government intervention and support. 

“It 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 general,” she concluded.

Rs 36L
Approx. annual cost of medicine

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