The Tuesday announcement on GST exemption on medicines for rare diseases does not seem to give much relief to those who need the treatment, according to health activists.
They say these medicines are unreasonably expensive, and only a few can afford to import them.
Finance Minister Nirmala Sitharaman on Tuesday declared a GST Council resolution to reduce GST tax on cancer-fighting medicines or drugs for rare diseases and food used for medical purposes.
Activists say that they were hoping for GST tax exemption for drugs that have already been approved by India’s drug regulator and are locally available throughout the country. But the government does not care about this, they said.
Activists asked the finance and health ministries to make medicine for Spinal Muscular Atrophy (SMA) exempt from taxes. SMA is a rare and severe genetic disease that happens when a person doesn’t have a working survival motor neuron 1 (SMN1) gene. This causes them to lose motor neurons quickly and permanently, which affects their muscles and their ability to do basic movements like breathing and swallowing.
However, the requests have yet to be addressed by the ministers. The exemption on imported medicines will hardly benefit, said Archana Panda, co-founder and director, of patient advocacy, of the SMA Foundation of India.
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Novartis’ gene therapy Zolgensma is a kind of therapy that is one of the most expensive therapies available for SMA. This therapy costs around $2.1 million in the US and just under €2 million in Europe.
Panda said that the thing is that there are only a few or negligible people who can import the drug. The drug’s cost is exorbitant, and only those who get the medicine are engaged with any NGO or humanitarian organisation.
She added that around 1,050 SMA-registered patients came from across the country.
Her organisation had also approached the Supreme Court two years ago for GST exemption on Indian drugs.
Panda said the Supreme Court declined to get involved, claiming that this is a matter of policy. They thought the health ministry ought to be able to hear them. The GST exemption for medications sold in India is still pending as of now.
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Roche Pharma’s medicine, Evrysdi (Risdiplam), is available in India and is used for fatal genetic disorders. Even though Roche does not manufacture the drug in India, the drug regulator has granted them market authorization; therefore, the medicine’s costs are much lower than the imported options.
The price of Roche’s drug is defined by the weight of the patient. For instance, with their patient support program, a 60-kg patient would cost around Rs. 72 lakhs a year.
Another activist, being anonymous, said the drugs that the Indian drug regulator has approved needed to be exempt from tax.
