The court has directed a nine-member Committee constituted by it, to submit a report on proposals for crowdfunding of the costs of treatment for children with rare diseases.
The committee has further been directed to look into various related issues in its report, including - providing of urgent treatment and therapy options to patients, steps for indigenization of the development of the therapies, reasonable timelines to be followed, accelerated approval processes for current Indian researches on the diseases.
While the centre's response on the idea of crowdfunding was that it couldn't be undertaken until a dedicated e-platform was set up for the purpose, the representative of the Ministry of Health informed the court orally that a communication had been sent to 4 organisations to arrange for funding of the treatment of the patients in question.
The court directed the Union to consider accelerated approvals to the current research on DMD therapies, and said that it ought to explore the confidential proposal put forward by one M/s Sarepta Therapeutics to make the therapies available for children.
Earlier, the court had remarked, "Just because of the exorbitant price of the drug or treatment, patients, especially children, suffering from a rare disease ought not to be deprived of treatment for their condition."
The Court, through a common judgment in the two petitions, had issued directions to the Union of India, Ministry of Health and Family Welfare to finalize the implementation of Draft Health Policy for Rare Diseases, 2020 at the earliest.
The petitioners had contended that due to the exorbitant prices involved in the treatment, the government must provide free treatment to them as the disease fall well within the draft policy which is at the consultation stage at present.
The Court had also directed the Union of India to implement and notify the draft policy and also consider crowd funding option in the meantime for the successful treatment of the petitioners.
The petitions have been filed by natural guardians of two children suffering from a rare disease known as Duchenne Muscular Dystrophy (DMD). According to the petitioners, due to the rarity of the disease, its drug was being manufactured by a US-based company called Sarepta Therapeutics, because in India, the drug was presently in its experimental stage.
The petitioners, being aggrieved by the exorbitantly expensive prices of the drug, filed petitions in the High Court seeking directions on the Union of India, Ministry of Health and Family Welfare to ensure that the petitioners are given free treatment for the disorder as they could not afford the heavy prices at which the drug was being sold