Image Credits-India Today
The Supreme Court today deliberated on a significant batch of petitions filed by parents of children suffering from Muscular Dystrophy (MD), a debilitating genetic disorder. The petitioners are seeking a comprehensive policy from the government that ensures free treatment for the disease, which imposes an enormous financial burden on affected families.
A bench led by Justice A.S. Bopanna heard the pleas, which highlighted the severe challenges faced by families in affording the expensive and lifelong treatment required for Muscular Dystrophy. The petitioners argued that the government has a constitutional obligation to provide adequate healthcare, particularly for rare and serious conditions like MD. The lack of a dedicated policy, they contended, results in patients being denied the right to life with dignity.
During the hearing, the petitioners’ counsel pointed out that while Muscular Dystrophy is recognized as a rare disease under the National Policy for Rare Diseases, 2021, the existing provisions for financial assistance are grossly inadequate. The counsel emphasized that the policy, which caps financial aid at Rs. 20 lakh, falls short of covering the actual cost of treatment, which can run into crores over a patient’s lifetime.
The bench sought a detailed response from the Union Ministry of Health and Family Welfare on the status of implementation of the National Policy for Rare Diseases, particularly in relation to Muscular Dystrophy. The Court also questioned the government on the steps taken to ensure that financial constraints do not deprive patients of life-saving treatment.
The Supreme Court has scheduled the next hearing for September, urging the government to explore avenues for augmenting financial assistance and ensuring universal access to treatment for Muscular Dystrophy patients. The outcome of this case could potentially set a precedent for healthcare access for other rare diseases as well.