In a relief to patients, the GST Council has exempted cancer medicine dinutuximab and food for special medical purposes used in treatment of rare diseases from GST. Branded as Qarziba, dinutuximab is used to treat neuroblastoma, a cancer of nerve cells in patients over 1 year of age. The drug costs Rs 36 lakh is imported by individuals for personal use. It was taxed at a rate of 12 percent IGST.

Last year, the Parliamentary panel had recommended waiving GST on cancer drugs. It pointed out that cancer treatment is expensive in the country and should be a notifiable disease — required by law to be reported to the government.

Experts said that patented or rare disease drugs are mostly imported and the patients have to raise funds on their own for them, unless they are part of a charity programme. The patients generally resort to crowd funding and donations. This is piecemeal as patients don’t always manage to raise funds.

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The other option is filing a PIL to try and have the government support the patients via its rare diseases fund. While many of the times these options are effective, the process can run into months, and many a times the administering of the drug is time sensitive.

Besides being expensive, access to many of these rare disease and patented drugs is also unregulated and erratic. They are mostly imported, that too on a need-basis. Generally, when a drug is prescribed by a doctor, the patient is connected to either an NGO that helps facilitate the process or other patients that need the drug. The end goal being a distributor will import the drug generally for a group of patients.

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