Kannur: The treatment committee of the 18-month-old toddler Mohammed, suffering from a rare genetic disorder called spinal muscular atrophy, on Sunday said they received over Rs 46 crore through crowdfunding for his treatment. The treatment committee told the media here that the amount will be used for his treatment requiring a dose of Zolgensma, worth over Rs 18 crore, which is considered one of the most expensive drugs in the world and the rest of the amount will be used as per the direction of the state government.
"The crowdfunding was completed on July 5 and we received Rs 46,78,72, 125.48. Over 7.77 lakh people contributed to the treatment fund in the bank account," KalliaseriMLA, M Vijin, the coordinator of the treatment committee said. Mohammed, son of PK Rafeeq and Mariyumma, will receive the dose of medicine by next month, the committee said. They also informed that some amount will be used for the treatment of Mohammed's sister,15-year-old Afra, who also suffers from the same disease and is bound to a wheelchair. "The rest of the amount will be utilised as per the direction of the state government," they said.
Read: Kerala HC asks govt to come out with crowdfunding policy
The treatment committee headed by the Left MLA had appealed to the public to crowdfund for the treatment of Mohammed. The campaign was taken over by social media resulting in collecting a huge amount within around seven days from across the world. The medicine will be procured from abroad and the state government has initiated the process for the procurement. Medical experts suggest that the child will have to be administered the dose of the medicine before he reaches the age of two.
The government had earlier informed the Kerala High Court that according to the National Rare Disease Policy, 2021 of the Union Health Ministry Ministry, Spinal Muscular Atrophy (SMA) is categorised in Group 3, for which the cost of treatment is very high, and it recommends a digital crowdfunding platform be leveraged for mobilising necessary funds. It had further said that there are around 102 patients in the state suffering from SMA, a rare genetic disorder, of whom 42 have received the treatment under the compassionate use programme extended by pharmaceutical companies.
(PTI)
