To avail of this exemption, the individual importer has to produce a certificate from the Central or State Director of Health Services or the District Medical Officer/Civil Surgeon of the district. Drugs/medicines generally attract basic customs duty of 10 per cent, while some categories of lifesaving drugs/vaccines attract a concessional rate of 5 per cent or nil.
SMA is the leading genetic cause of infant mortality. However, due to its extremely low incidence rate, the disease becomes a low priority for most pharma manufacturers due to the diminished market requirements. In recent years, several treatments for SMA have been developed which have proven to be effective in improving motor function and extending the lives of SMA patients. The high cost of these treatments can be attributed to several factors. For example, the cost of developing and producing a gene therapy like Zolgensma for treating SMA in paediatric patients can run into billions of dollars.
Cure SMA Foundation of India, a parent-led organisation, had approached the court seeking exemption of GST and customs duty on treatment of patients suffering from the disease. However, the court said, “Ultimately it is for the government to take a policy decision whether to completely exempt any drug for treatment of rare diseases from levy of IGST, CGST, SGST or customs duty. No writ of mandamus can be issued for directing the Union to exempt drugs from payment of tax or duty.”
Based on what years of SMA research has shown about the importance of survival motor neuron protein to neuromuscular integrity, Ohio State University scientists are exploring links between the protein and sarcopenia, the age-related loss of skeletal muscle mass and strength.
SMA is a rare neuromuscular disorder which causes muscle weakness and progressive loss of movement. It is a life altering disease. SMA is usually suspected when babies are lethargic and have delayed motor developmental milestones. Timely diagnosis and early initiation of multidisciplinary management can ensure appropriate intervention to improve the quality of life.
On Wednesday, Mahim resident Zeba Gufran was ecstatic as without her spending a rupee, her four-year-old son became the first in Mumbai to get started on a spinal injection treatment costing around Rs 5 crore in the first year.
“When we took the statements from both banks, the contributions received for the child’s treatment have reached Rs 46.7 crore. While the highest single amount received was Rs 5 lakh, the lowest amount was Re1,” said MLA M Vijin, who headed the treatment committee.
According to global statistics, it takes seven years to diagnose any rare disease on average. SMA Type 1 cases can be diagnosed right at birth. But the struggle to afford this wonder drug is a challenge for families dealing with a condition like this. The curative drug for SMA - Zolgensma costs USD 2.1 million (approximately Rs 16 crores).
NOVARTIS-GENETHERAPY-For Anderson family, an early bet on SMA gene therapy
U.S. regulators are expected to make a decision this month on whether to approve Zolgensma, a one-time therapy seen as a potential long-term solution for the rare disease that is the leading genetic cause of death in infants.
NHS England said it reached a "managed access agreement" with Biogen under which it will fund treatment for a limited time and collect data on the drug's effectiveness.
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