Mucormycosis: High cost of treatment burdens economically vulnerable families

PIL plea in the Gujarat High Court over Mucormycosis/Black Fungus, Court issues notice: A note by Citizens’ Covid Action Group:

PIL no 67/2021 has been filed in the Gujarat High Court with regard to the grave situation of Mucormycosis in Gujarat and the procedural lapses to obtain Amphotericin B, the antifungal injection which has been in short supply. Petitioners Maitree Muzumdar and Khush Vachhrajani, filed the petition through Advocate Amit Panchal. The petition was heard by Honourable Justice Biren Vaishanv, where the court has issued notice to the state today 1st June 2021. The PIL was filed to assert the urgency of the issue which is time sensitive and take note of the situation on ground.

Gujarat has reported the highest number of Mucormycosis cases in India and cases are increasing rapidly. The petitioners argue that currently there is no proper system for reporting Mucormycosis cases in the State, and seek for the correct number of cases and public availability of information of Mucormycosis cases, recoveries and deaths in the entire state from government and public hospitals both in rural and urban areas as mandated under the Epidemic Diseases Act. The petitioners have also demanded for a mechanism to separately monitor Mucormycosis deaths without clubbing them as Covid deaths. Till date no such data regarding the number of Mucormycosis patients has been publicly made available by the state government. The Petitioners further argue that the opacity around the management of the antifungal injection, and the absence of an accountable authority has created panic among patient’s families. To remedy the same, the petitioners provide detailed procedural suggestions to plug in the gaps in the current injection distribution system, urging the state to adopt the same principle and urgency as that of oxygen. These practical suggestions include: (a) real-time public dashboard that reflects availability of injection and Mucormycosis beds at all nodal hospitals and other hospitals and (b) Public information on injection distribution. In addition to these, a demand for at least one designated nodal hospital in each district along with nodal officers in each of them dedicated to Mucormycosis cases and ensuring the streamlining of the application process for accessing medicines have also been raised by the petitioners to plug in the procedural gaps with respect to the access to the treatment.

The petitioners have emphasised that the high cost of treatment for Mucormycosis is a massive burden on economically and socially vulnerable families and have demanded for a free treatment to EWS patients at private hospitals under the Ayushman Bharat – PMJAY scheme. In addition to this, a demand for an action plan specifically for rural areas for early detection of Mucormycosis and adequate healthcare access for patients through the Panchayat and health system has also been raised under the PIL. The petitioners have urged the government for active dissemination of information through multiple modes to enable early detection of Mucormycosis and also ensure that the public is aware of how to access the treatment and medication and the process for the same.

Lastly, in order to enhance accountability and transparency in the management of Mucormycosis treatment in the state, the petitioners have demanded for a timebound grievance redressal mechanism at the district level for which a grievance officer must be appointed who is independent of the distribution mechanisms. The petitioners also see such a mechanism as a way for governments to work with active citizens to ensure we tide over this crisis together.

Despite the high fatality rate of Mucormycosis (over 50%) and the possible death of a patient in less than 24 hours in absence of timely treatment and medical supervision, the matter shall now be heard only on June 15 along with the suo moto PIL pertaining to Covid-19 management.

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