Right to Health is a Fundamental Right: Delhi High Court seeks finalisation of timeline from Centre on Draft Health Policy for Rare Diseases

Right to health and healthcare is a fundamental right, the Delhi High Court recently said directing the Central government to give a specific timeline with respect to finalisation and notification of the Draft Health Policy for Rare Diseases, 2020 (Master Arnesh Shaw vs UOI)..A single-judge Bench of Justice Prathiba M Singh opined that finalisation of the policy cannot be kept pending indefinitely since human lives are involved. ."The finalisation of the Draft Health Policy for Rare Diseases cannot be kept pending indefinitely, especially when common human lives are at stake. The earlier Policy having been kept in abeyance, it is incumbent for the Government to finalise and notify the Policy at the earliest," the Court said. .The Court was dealing with two petitions concerning children suffering from a rare disease known as Duchenne Muscular Dystrophy (DMD)..The petitioners sought a direction to 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, Central government said, was kept in abeyance. .The All India Institute of Medical Sciences also placed its report in the matter and said that a final recommendation with regard to 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 view of the submissions before it, the Court opined that 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 draft policy of the government, which was introduced in 2020 for consultation has still not seen the light of the day. Considering the fact that `Right to Health and Healthcare’ is a Fundamental Right which has been recognised by the Supreme Court to be a part of the `Right to life’ under Article 21 of the Constitution, it is incumbent on society in general and authorities in particular to ensure that the life of such children is not compromised, even if there is a small window of improving their chances of survival or even providing a better quality of life," the Court stated. .It also noted that in the Draft Health Policy for Rare Diseases 2020, DMD was recognised as being one of the rare diseases whose treatment was unaffordable and thus even proposed exploring crowd funding. .Since the earlier policy was kept in abeyance, the Court directed that a "specific timeline shall be provided by the Secretary, Ministry of Health and Family Welfare, in respect of the finalisation and notification of the Draft Health Policy for Rare Diseases, 2020.".Insofar as the petitioners were concerned, the Court asked the Secretary, Ministry of Health and Family Welfare to proceed in terms of the draft policy and explore crowd funding, including through prospective individuals, corporate donors and independent foundations, which exist to fund such treatments. .The Ministry shall also contact M/s Sarepta Therapeutics, USA, which provides financial support/ medication in deserving cases, the Court ordered. .Advocates Vivek Chib, Rahul Malhotra, Asif Ahmed, Vikhyat Oberoi, Manas Tripathi appeared for one petitioner, the other petitioner was represented by Advocate Ashok Agarwal. .Centre was represented by Standing Counsel Ripudaman Bhardwaj, Ajay Dugpaul. AIIMS was represented by Advocates Satvik Varma, V.S.R. Krishna..[Read Order]