The right to health is an integral part of the right to life under Article 21 of the Constitution, and the Central and State Governments have a duty to protect the life of citizens, especially children suffering from rare diseases.

JUDGMENT :

Mohammad Rafiq, CJ.

Hearing convened through Video Conferencing:

1. This writ appeal under Section 2(1) of the M.P. Uchcha Nyayalaya (Khand Nyayapeeth Ko Appeal) Adhiniyam, 2005 has been filed by appellants State of M.P. & others challenging the order dated 22.6.2020 (Annexure WA/1) and the order dated 15.12.2020 (Annexure WA/2) passed by the Single Bench in Writ Petition No. 18974/2018 filed by respondent No. 1 Prajwal Shrikhande.

2. Respondent No. 1/writ petitioner approached this Court challenging the order dated 23.7.2018 (Annexure P/1) passed by the Mission Director, RBSK, NHM, Bhopal and seeking a direction to the respondents i.e. State of M.P. and Union of India to provide benefit of the "National Policy for Treatment of Rare Diseases" (Annexure P/2) to the son of the petitioner named Master Harshal Shrikhande, aged 4 years.

3. Case of the respondent No. 1/writ petitioner before the learned Single Judge was that his son is suffering from rare disease named "Gaucher". The Central Government, Ministry of Health and Family Welfare promulgated a policy known as "National Policy for Treatment of Rare Diseases" after conducting a comprehensive study with the help of the experts in the field. The Central Government identified 450 rare diseases, which have been recorded in India, most of which are serious and chronic diseases, requiring long term specialized treatment. The writ petitions were filed before the Delhi High Court by the parents of some children, who are suffering from rare diseases, contending that since the cost of treatment of such diseases is quite exorbitant, they are not covered by the insurance policy. Therefore, there is a need for formulating a national policy for treatment of the patients suffering from such rare diseases. The Delhi High Court in W.P.(C) No. 4444/2016, W.P.(C) No. 7730/2016 and W.P. No. 7729/2016 directed the Ministry of Health and Family Welfare Department to frame a national policy for treatment of rare diseases. In compliance of the aforesaid direction, the Central Government, after taking assistance of a committee consisting of Professor V.K. Paul, Professor I.C. Verma and Dr. Deepak Tempe, formulated "National Policy for Treatment of Rare Diseases". According to the petitioner, Gaucher disease with which his son is suffering is also identified as a rare disease. The policy envisages that the Government of India would set up a corpus of Rs. 100 crores for treatment of rare diseases. It further envisages that the State Government would also contribute to such corpus. The Central Government and State Government would both contribute to the corpus in the ratio of 60:40. If the State Government wants, it can contribute larger amount to the corpus. The writ-petitioner submitted an application before the Competent Authority who however rejected the same vide order dated 23.7.2018 on the premise that he does not fall within the category of "below poverty line".

4. Shri Devashish Sakalkar, learned counsel for the writ-petitioner has argued that petitioner's son requires doses of two vials to undergo Enzyme Replacement Therapy after every 14 days. The pharmaceutical company manufacturing the medicine made that medicine available free of cost to his son initially for 3 to 4 month. Subsequently, the company agreed to provide 1/3rd of the total medicine required for a year free of cost on the condition of payment for remaining 2/3rd. Learned counsel for the petitioner has placed reliance upon order dated 13.3.2020 passed by the Division Bench of Madras High Court in W.P. No. 21050/2017- Lysosomal Storage Disorders Vs. State of Tamil Nadu & others, order dated 24.2.2020 passed by Karnataka High Court in W.P. No. 19061/2015- Lysosomal Storage Disorders Society in India Vs. State of Karnataka, order dated 17.4.2020 passed by the Single Bench of High Court of Uttarakhand in WPMS No. 2312/2019- Sumit Singh Vs. Union of India and others and the order dated 27.2.2020 passed by the High Court of Kera