2 petitions were filed in the Delhi High Court regarding the exorbitant prices of drugs being charged and the incapacity of economically weak citizens to afford them, thereby having to compromise on their treatments.
The petitioners in the case are the guardians of the children suffering from a rare disease, Duchenne Muscular Dystrophy, for which the drug was only made by a Company in the US. Taking note of the rare disease, the court directed the Union of India, Ministry of Health and Family Welfare (MoHFW) to take steps towards finalizing and implementing the Draft Health Policy for Rare Diseases, 2020. The petitioners submitted that since the rare disease of their children was included in the draft policy, the government must provide for the expenses of the drugs. However, the government, citing the rejection of an earlier policy in 2017 which was in its final stages but was not implemented, stated that complete reliance cannot be placed on the present draft. Further, it was submitted that the financial constraint of the government would not enable it to provide for the complete cost of the treatment, hence they proposed the idea of crowdfunding.
Noting the submissions of both the parties and recognizing the petitioners’ fundamental right to health and healthcare as part of the right to life provided by Article 21 of the Indian Constitution, the court stated that the inability to afford drugs of exorbitant prices must not deprive patients of their treatment. The court ordered the MoHFW to explore crowdfunding and other methods like corporate donors, individual foundations, and contacting the US Company for raising money or procuring the drug. The court ordered the government to devise a proposal for the same within 10 days. Further, the court, stating that citizens’ lives are at stake, directed the government to finalize the draft policy at the earliest.