Court: Supreme Court of India
Bench: Chief Justice and Justice Pamidighantam Sri Narasimha
Case Title: P. Sreenivasa Chakravarthy Vs. Union of India & Anr.
Case No: Writ Petition Civil........... Diary No(s). 29711/2021
Date of Hearing: 05 Dec 2022
Intoduction
In a significant move addressing the healthcare challenges faced by individuals living with rare diseases, the Supreme Court of India has directed the Ministry of Health and Family Welfare to take a closer look at the policies and treatment protocols for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This directive comes in response to a writ petition filed by P. Sreenivasa Chakravarthy, who invoked the jurisdiction of the Court under Article 32 of the Constitution of India.
Petitioner's Grievance:
The petitioner, P. Sreenivasa Chakravarthy, is a patient diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a condition recognized as a neurological disease by the World Health Organization since 1969. Chakravarthy's grievance centers around the lack of concrete steps taken by the government to diagnose and treat ME/CFS despite the existence of a National Policy for Treatment of Rare Diseases, first framed in 2017 and revised in March 2021.
Chakravarthy highlighted the introduction of a digital portal by the Ministry of Health and Family Welfare aimed at crowd funding and voluntary donations for the treatment of rare diseases. However, he argued that such measures have not adequately addressed the specific needs of ME/CFS patients.
Court's Observations and Directions:
The bench, comprising the Chief Justice and Justice Pamidighantam Sri Narasimha, acknowledged the complexity of the issues raised by the petitioner. The Court recognized that the reliefs sought by Chakravarthy would necessitate expert scientific evaluation and policy decisions at the appropriate administrative level.
The Court opined that it would be most appropriate for the Ministry of Health and Family Welfare to examine the grievances presented by the petitioner. The bench suggested that a comprehensive review by experts could lead to informed policy decisions and effective treatment protocols for individuals suffering from ME/CFS.
Next Steps for the Petitioner:
The Supreme Court granted Chakravarthy the liberty to prepare a detailed representation of his grievances and submit it to the Secretary of the Ministry of Health and Family Welfare. The Court emphasized that this representation should include a copy of the Court's order to ensure that the matter is examined expeditiously and thoroughly at the appropriate levels of the government.
Implications of the Judgment:
This directive from the Supreme Court underscores the need for a nuanced and expert-driven approach to healthcare policies, particularly concerning rare diseases like ME/CFS. The Court's decision highlights the importance of scientific and policy expertise in addressing the challenges faced by patients with rare diseases.
The involvement of the Ministry of Health and Family Welfare and the directive for a comprehensive review could pave the way for more robust and effective healthcare strategies for ME/CFS patients. This move also sets a precedent for future cases where individuals suffering from rare diseases seek judicial intervention to ensure that their healthcare needs are adequately met by the government.
Conclusion:
The Supreme Court's directive to the Ministry of Health and Family Welfare marks a crucial step towards better healthcare policies for rare diseases. By emphasizing the need for expert evaluation and policy-making, the Court has highlighted the importance of a tailored approach to addressing the unique challenges faced by ME/CFS patients. As the petitioner prepares his comprehensive representation, there is hope for more informed and effective treatment protocols for individuals suffering from this debilitating condition.