New Delhi: Aam Aadmi Party (AAP) Rajya Sabha MP Sanjay Singh has requested the Upper House to allow him to present his views on Spinal muscular atrophy (SMA) disease, which has impacted hundreds of children in the country, during the Zero Hour.
“Sir, I would like to bring to your notice that at present hundreds of children in the country are suffering from a serious disease called SMA. This disease is so dangerous that due to it most of the infants die across the world,” Singh’s notice read.
The AAP MP said that the injection used to treat SMA is priced at Rs 17 crore and the government has also imposed GST on it, which has made it unaffordable.
“The injection used in this disease costs Rs 17 crore, which is imported from abroad, on which GST has also been imposed by the government. Hundreds of children in the country are losing their lives due to lack of treatment, unavailability of medicines, heavy tax rates and extremely expensive medicines,” Singh said.
In the notice, the senior AAP leader asked the government to ensure the “availability of medicines at cheap rates, proper guidelines and immediate reduction in tax rates” for the treatment of children suffering from SMA disease.
Spinal muscular atrophy is a neurological disease affecting voluntary muscle movement, leading the muscles to shrink.
Earlier in 2022, then Minister of State in Health Bharati Pravin Pawar replied in the Lok Sabha that 295 Spinal Muscular Atrophy cases were reported in the country.
Pawar said that the Department of Revenue, Ministry of Finance gives full waiver of Basic Customs Duty (BCD) and IGST to drugs imported (personal use only) for treatment of SMA, thereby making the medicines for SMA more affordable.
The MoS Health also shared that the Department of Pharmaceuticals has initiated the implementation of the Production Linked Incentive Scheme for Pharmaceuticals. The Scheme provides financial incentives to manufacturers selected under the Scheme for domestic
manufacturing of various product categories, which also include Orphan drugs.