GST exemption on medicines for rare diseases is unlikely to provide any relief to those in need: Health activists

economictimes.indiatimes.com:

GST exemption on medicines for rare diseases announced on Tuesday is unlikely to provide any relief for those who are in dire need of treatment, health activists told ET. According to them, these drugs are exorbitantly priced and the share of patients who can afford to import them is negligible. Finance minister Nirmala Sitharaman on Tuesday announced GST Council decision to exempt cancer-fighting drugs, medicines for rare diseases, and food products for special medical purposes from GST tax.

Activists said they have been seeking tax exemption instead for drugs which are approved by India’s drug regulator and are available in the country. But the government is yet to budge, they said. For example, activists have made several requests to the finance and health ministries to exempt medicine for treatment of spinal muscular atrophy (SMA), which is a rare and devastating genetic disease caused by a lack of a functional survival motor neuron 1 (SMN1) gene, resulting in the rapid and irreversible loss of motor neurons, affecting muscle functions, including breathing, swallowing and basic movement.

“But our requests are pending before the ministries. The exemption of tax for imported drugs hardly serves any purpose,” said Archana Panda, cofounder and director, patient advocacy cure, of SMA Foundation of India. Novartis' gene therapy Zolgensma is one of the most expensive therapies available for SMA with a price tag of around $2.1 million in the US and just under €2 million in Europe.