Aam Aadmi Party (AAP) Rajya Sabha MP Sanjay Singh has appealed to the Upper House to allow him to discuss Spinal Muscular Atrophy (SMA) during the Zero Hour. He highlighted the severe impact of SMA on hundreds of children in India, emphasizing the exorbitant cost of treatment and the need for government intervention to make medicines more affordable.
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- AAP Rajya Sabha MP Sanjay Singh requested to speak on SMA during Zero Hour in the Upper House.
- Singh emphasized that hundreds of children in India are suffering from SMA, a serious disease.
- SMA is a neurological condition affecting voluntary muscle movement, leading to muscle shrinkage.
- Singh noted that most infants with SMA die worldwide due to the disease’s severity.
- The treatment for SMA involves an injection priced at Rs 17 crore, imported from abroad.
- The government has imposed GST on this injection, making it unaffordable for many families.
- Singh urged the government to ensure affordable medicine availability, proper guidelines, and reduced tax rates.
- In 2022, 295 SMA cases were reported in India, as stated by then Minister of State in Health Bharati Pravin Pawar.
- The Department of Revenue provides a full waiver of Basic Customs Duty (BCD) and IGST for drugs imported for personal use to treat SMA.
- The Department of Pharmaceuticals has initiated a Production Linked Incentive Scheme for domestic manufacturing of orphan drugs, including SMA treatments.
