The GST Council at its next meeting on Tuesday, July 11, is likely to exempt cancer medicine Dinutuximab from tax. The drug, branded as Qarziba, is used to treat Neuroblastoma, a cancer of nerve cells in patients over 1 year of age.

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The drug worth Rs 36 lakh, is imported by individuals for personal use. It is currently taxed as at rate of 12 percent IGST. Opinion is that the medicine should be exempted from GST as the drug is expensive and money to fund treatment is generally through crowdfunding.

The parliamentary panel, last year, recommended waiving GST on cancer drugs. The panel pointed out that cancer treatment is expensive in the country and should be a notifiable disease. That means, it is required by law and information is reported to the government.

Experts point out that when it comes to patented or rare disease drugs, majority of the time the drugs are imported. Patient generally have to raise the funds on their own unless they are part of a charity program. Patients generally resort to crowd funding and donations. This is piecemeal as patients don’t always manage to raise funds.

The other option is filing a PIL to try and have the government support the patient 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.

Lawyers say pharma companies want to steer clear of manufacturing cheaper copies in the country due to the heavy patenting hence possibility of litigation.

The issue, experts say, has to be taken up at a government level to improve accessibility and options to reduce pricing such as compulsory licensing, raising the government funds for rare diseases and urging companies to adopt patients via CSR programs. ​