Hospitals across the country have been facing an acute shortage of clofazimine, one of the key drugs to treat leprosy, for months now. But, the Union Ministry of Health and Family Welfare, doesn’t want to part with information on its availability and requirement.
According to the World Health Organisation (WHO), India hosts 66% of the leprosy patients in the world. Doctors say that clofazimine is one of the three essential drugs used in the multi-drug treatment of multibacillary leprosy cases along with rifampicin and dapsone. Under the National Leprosy Eradication Programme, the government has been ensuring a steady supply of monthly blister packs containing these three drugs for 12 months to the patients.
Many people, however, require extended treatment and the packs may be lost, misplaced or damaged too. The medicines are also privately bought. Though the other two drugs are easily available, clofazimine isn’t. Its non-availability, doctors say, could lead to a dangerous situation as all the three drugs will have to be given together to prevent drug-resistant leprosy. Clofazimine has also been recommended by the WHO to treat multi-drug resistant tuberculosis. In June, the Indian Association of Dermatologists, Venereologists, and Leprologists (IADVL) wrote to Union Minister for Health and Family Welfare Mansukh Mandaviya, seeking steps to address the shortage.
However, when Kannur-based ophthalomologist K.V. Babu sought year-wise data on the quantity of clofazimine used in India from January 1, 2015 to December 31, 2021, under the Right to Information (RTI) Act, the reply from the National Pharmaceutical Pricing Authority (NPPA) was that “the information sought is not available in this office”.
He had also sought year-wise data on the quantity of the drug procured/ produced/imported in India and sought to know if the Ministry had received a letter dated June 21 from the IADVL. The Central Public Information Officer (CPIO) replied that “a CPIO is not expected to create/provide intangibles such as interpretations, explanations, opinions, advices, reasons on the queries raised by the applicants as they cannot be said to be included in the definition of information in Section 2 (f) of the RTI Act.” The RTI query was filed with the Ministry on June 30, which was forwarded to the NPPA. The reply was dated July 8.
The letter from the IADVL points out that clofazimine is being used to bring down the dose of steroids in leprosy patients with extremely painful, disabling and long-recurring conditions. Sometimes it is added if standard doses of steroids are not able to control the reactions. Dermatologists and leprologists are also facing a serious challenge in treating leprosy patients who want private treatment. Alternative three-drug regimens without clofazimine are very costly and often not feasible, they say.