Government in talks with companies over pricing of rare diseases drugs

The government is actively negotiating pricing of some high-priced drugs used for treatment of rare diseases with pharmaceutical companies including Sanofi, Sarepta and Roche to bring relief to patients who are unable get treatment due to exorbitant prices of drugs.

"Discussions relating to pricing and supplies of medicines with various pharma companies are underway," the government has informed the Delhi High Court that has been hearing a batch of petitions filed by rare disease patients and their caretakers.

The court had in May set up a five-member National Rare Diseases' Committee (NRDC) to implement the Centre's rare diseases policy to ensure that its benefits reach patients.

The panel held discussions with companies involved in research, manufacture and sale of therapies of rare diseases, including Sanofi, Sarepta and Roche, on July 17, the government informed the court earlier this month.

NRDC will file a report on the progress made by it in negotiation with companies manufacturing and marketing medicines for rare diseases by the next date of hearing scheduled for September 1, it said. Activists have demanded tax exemption for drugs that are approved by India's drug regulator and are available here.

The government counsel informed the court it has flagged the issue over customs duty and GST to the finance ministry and "is hopeful of informing the court about the outcome of the said issue on the next date".