Decided on January 27,2021

Prajwal Shrikhande Respondents


MOHAMMAD RAFIQ,C.J. - (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".;

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