MP seeks govt help for kids suffering from spinal muscular atrophy
By IANS |
Published on
Wed, Mar 17 2021 12:42 IST |
4 Views
spinal cord.. Image Source: IANS News
New Delhi, March 17 : Congress MP Vivek Tankha during zero hour in the Rajya Sabha on Wednesday raised the issue of children suffering from spinal muscular atrophy.
The Congress MP raised the matter and demanded the government to take up theissue with the drug manufacturing company so that the drug becomes cheaper. He also demanded that the medicine should be provided to all those children who are suffering from this genetic disease.
The company Novartis manufactures the drug named Zolgensma for gene therapy to treat spinal muscular atrophy. Zolgensma is the most expensive medicine in the world and it costs 2.1 million US dollars, about Rs 15.24 crore in Indian currency. One injection is enough to correct the genetic defect.
Rs 14.92 crore raised on ImpactGuru.com to cover treatment expenses of a 5-month-old ANI | Updated: Feb 10, 2021 16:03 IST
Mumbai (Maharashtra) [India], February 10 (ANI/NewsVoir): Mumbai-based Priyanka and Mihir Kamat raised Rs 14.92 crore through crowdfunding on ImpactGuru.com to cover the cost of the World s Most Expensive Drug - Zolgensma, as their five-month-old baby Teera is diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
SMA is a rare genetic disease that attacks the baby s nerves and muscles, and as it progresses, makes it extremely difficult for the child to carry out basic activities like sit up, lift their head, swallow milk, and even breathe. SMA is currently the leading genetic cause of infant death worldwide, and it affects 1 in 10,000 babies.
Rs 14 92 crore raised on ImpactGuru com theusnews.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from theusnews.com Daily Mail and Mail on Sunday newspapers.