Going beyond customs: The Hindu Editorial on customs exemption for drugs, food imported for treatment of rare diseases 

For the state, there can be no rest; vigil should be constant, and the endeavour should be to address issues relating to the public’s welfare continually. A classic exposition of this principle is the Centre’s announcement providing full exemption from basic customs duty for all drugs and food imported for treatment of rare diseases listed under the National Policy for Rare Diseases (and anti-cancer drug Pembrolizumab). This adds benefits, beyond those already incorporated in the policy (originally formulated in 2017) finalised just under a year ago. In order to avail this exemption, the individual importer must produce a certificate from specified authorities. Medicines generally attract basic customs duty of 10%, while some categories of lifesaving drugs/vaccines get concessions or exemptions. Exemptions have already been provided to specified drugs for the treatment of Spinal Muscular Atrophy or Duchenne Muscular Dystrophy. Rare diseases are a group of diseases that occur infrequently in the community and as such patients are disadvantaged by the lack of volumes that usually spur pharmacological companies into producing life-saving medicines. While some of these diseases do not have any described treatment methodologies, wherever treatment exists, the drugs have to be imported and costs are prohibitive, putting it out of the reach of most people. The NPRD estimates that for a child weighing 10 kg, the annual cost of treatment for some rare diseases may vary from ₹10 lakh to more than ₹1 crore per year, with treatment being lifelong and drug dose and costs increasing with age and weight. The duty exemption will lead to substantial savings for patients. Organisations lobbying for support for patients with rare diseases have welcomed the move which will grant much needed relief to patients and their families; a ray of hope in an otherwise bleak treatment scenario.

While rare diseases are defined by their infrequent occurrence in the population, the sheer number of diseases (estimated between 7,000-8,000 conditions; 450 of them have been reported from hospitals in India), and the number of people with some form of rare diseases in India (an estimated 100 million) make it a problem that cannot be ignored. When the NPRD was released, it underlined the magnitude, and specified that demands could only be considered in the context of the available scarce resources that would have to be used judiciously. While striking a note for the goal of affordable health care, the government must ensure that its directions are followed in full, besides staying the course to innovate solutions for this category of patients.