India exempts import tax on pricey rare disease medicines

BENGALURU (Reuters): The Indian government said on Thursday it was providing a full exemption from basic customs duty for rare disease therapies and Merck & Co Inc’s (MRK.N) cancer therapy Keytruda when such medicines were imported for personal use.

The government said in a statement that while some drugs such as treatments for spinal muscular atrophy or Duchenne muscular dystrophy are already exempted from customs duty, it had received many requests for relief from import tax for other rare disease drugs.

For a child weighing 10 kilograms, the annual cost of treatment for rare diseases may vary from 1 million rupees ($12,172) to 10 million rupees per year, according to the Ministry of Finance statement.

“This exemption will result in substantial cost savings and provide much needed relief to the patients,” the ministry added.

Some of the rare diseases mentioned in the National Policy For Rare Diseases 2021 list include Wilson’s disease, cystic fibrosis and Pompe disease.

The government’s move on exemption comes amid reports that several Indian families have had to raise money through online fundraising campaigns to receive pricey medicines such as Novartis’ (NOVN.S) $2.1 million gene therapy, Zolgensma, for treating spinal muscular atrophy.