New Delhi, Oct 24 (PTI) Senior AAP leader and Rajya Sabha MP Sanjay Singh on Thursday launched a crowdfunding campaign to raise funds for the treatment of two girls suffering from spinal muscular atrophy (SMA), a rare genetic disorder that requires an injection priced at Rs 17 crore for treatment.
Addressing a press conference, Singh urged citizens to contribute toward the treatment of 11-month-old Sehrish and 8-month-old Kiara Rawat, both diagnosed with Type 1 SMA.
"I commit my entire salary for the month and will donate Rs 1 lakh each to the two girls, but my contribution alone is not enough," Singh said.
He encouraged citizens to donate small amounts, suggesting that if 17 crore people donate even Re 1, the required funds could be raised to save the children's lives.
Singh further said that the government has provided some tax exemptions, reducing the cost of the injection to Rs 10–11 crore. However, he stressed that the treatment remains unaffordable for most families.
Singh also requested Prime Minister Narendra Modi and the central government to intervene by negotiating with the US-based manufacturer of the injection to lower the cost further.
"Without government support, it’s nearly impossible for average families to afford this treatment," he said.
SMA Type 1 is an extremely serious illness with a life expectancy of just three years, and beyond that, it becomes nearly impossible to save them, he added.
The AAP MP also claimed that he would be writing letters to the prime minister and the health minister, urging them to make the life-saving injection more affordable through government channels.