The Delhi High Court recently said that the right to health and healthcare is a constitutional right, ordering the Central Government to include a clear timetable for the finalization and announcement of the 2020 Draft Health Policy for Rare Diseases (Master Arnesh Shaw vs UOI).
A single-judge Bench of Justice Prathiba M Singh said that because human lives are affected, the finalization of the strategy should not be left indefinitely postponed.
It is not possible to keep the finalization of the draft health policy for rare diseases indefinitely postponed, particularly as common human lives are at risk. Having held the earlier policy in abeyance, it is imperative for the government to finalize it.
The Court was associated with two petitions worrying about children suffering from a rare disease known as Duchenne Muscular Dystrophy (DMD). The petitioners sought direction from the Central government to ensure that free treatment is provided to them as the drug was exorbitantly expensive and was not affordable.
The Court recorded that the Central government, in its affidavit, stated that a Draft Health Policy for Rare Diseases was released by the government in 2020 and is still at the stage of consultation. The earlier policy of 2017 by the central government was kept in abeyance.
The All-India Institute of Medical Sciences also placed its report in the matter and said that a final recommendation about one of the petitioner’s treatment is to be taken by the Central Technical Committee for Rare Diseases, Ministry of Health and Family Welfare, Government of India.
In the light of the claims before it, the Court ruled that patients, in particular infants, suffering from a rare disorder should not be robbed of medication for their illness merely because of the exorbitant nature of the medicine or treatment.
The government’s draft legislation, launched for consultation in 2020, has not yet seen the light of day. Given that the ‘right to health and healthcare’ is a constitutional right accepted by the Supreme Court to be part of the ‘right to life’ under Article 21 of the Constitution, In particular, it is the duty of society in general and of the authorities to ensure that the lives of such children are not endangered, even though there is a limited window to boost their chances of survival or even to have a better quality of life,’ the Court observed.
It also noticed that DMD was recognized as one of the rare diseases in the Draft Health Strategy for Rare Diseases 2020 whose care was unaffordable and thus also recommended seeking crowdfunding.
As the previous policy has been held in abeyance, the Court has ordered that a “specific timeline shall be provided by the Secretary, Ministry of Health and Family Welfare, in respect of the finalization and notification of the Draft Health Policy for Rare Diseases, 2020.” The Court ordered the Minister, the Ministry of Health and Family Welfare, as far as the petitioners were concerned, to continue with the draft policy and to examine crowd financing, even by prospective individuals, corporate donors, and independent foundations that operate to finance such care.
The Ministry shall also contact M/s Sarepta Therapeutics, USA, which, in deserving situations, offers financial aid/medication, the Court ordered.
Advocates Vivek Chib, Rahul Malhotra, Asif Ahmed, Vikhyat Oberoi, and Manas Tripathi appeared for one petitioner, while Advocate Ashok Agarwal represented the other petitioner. The Centre was represented by Ajay Dugpaul, Standing Counsel, Ripudaman Bhardwaj. AIIMS was embodied by Satvik Varma, V.S.R. Krishna, the Advocate.
