Why medicines for cancer, rare diseases can impoverish Indians

Sixty-two-year-old Kusum Devi* developed sudden and severe lower back pain on the night of her daughter’s wedding. She was rushed to a nearby hospital in Surat, Gujarat. Eventually, investigations revealed that she had chronic lymphocytic leukaemia, blood cancer that needs life-long medication.

Neither the state health insurance scheme nor the Union government’s flagship Pradhan Mantri Jan Arogya Yojana covers the medicine prescribed to treat her cancer. Acalabrutinib (100 mg) costs about Rs 8,500 for a month’s course, a sum she can ill afford.

The Indian Cancer Society stepped in to support Kusum with up to Rs 5 lakh, as a result of which she is physically stable.

Government health insurance excludes many drugs and outpatient treatments. Drug price controls should fill this gap – but do not adequately address rare and specialised diseases, according to a report commissioned by the National Pharmaceutical Pricing Authority, India’s drug price regulator.

Outlets under the Pradhan Mantri Bhartiya Janaushadhi Pariyojana – aimed at facilitating the sale of centrally procured reasonably-priced generic medicines – stock about 2,110 medicines and 315 surgical items, including 384 medicines covered in the National List of Essential Medicines (NLEM 2022).

Essential medicines are “those that satisfy the priority health care needs, based on efficacy, safety, quality and total cost of...

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