In India’s first judgement on medical aid for rare diseases, the Delhi high court today directed the Delhi government to provide monthly medical treatment, free of cost, to a minor child afflicted with a rare disease (gaucher).

This, the court said, would be in fulfilment of the state’s Article 14 and Article 21 constitutional obligations of free medical aid to economically marginalised sections of society.

The financially less well off father of the child cannot afford the burden of enzyme replacement therapy costing Rs 6 lakh per month, which is necessary for lifelong treatment for the rare disease.

Dhir & Dhir founder and managing partner Maneesha Shir acted for the Ministry of Corporate Affairs (MCA) which on 27 February had notified a Schedule VII to the Companies Act 2013, dropping the entries “reducing child mortality” and “combating HIV, AIDS, malaria and other diseases” from its list of ten heads under which it is mandatory for companies to carry corporate social responsibility (CSR) activities.

On 28 February the court directed the MCA to re-examine Schedule VII.

Advocate Shyel Trehan was appointed amicus curiae in the matter assisted by advocates Tejaswi Shetty, Nishant Gokhale and Himanie Katoch.

Advocate and former Aam Aadmi Party (AAP) member Ashok Aggarwal, and advocate Kusum Sharma represented the minor child Mohd Ahmed.

Advocate H Hnunpuii acted for the central government, advocate Zubeda Begum was the standing counsel for Delhi and AIIMS was represented by advocates Mehmood Pracha and Sumit Babbar.

In March the Delhi High Court Bar Association had raised Rs 7.8 lakh for the treatment of Ahmed after AIIMS denied treatment on grounds of non-fulfilment of expenses.

Senior advocate AS Chandhiok mentioned on 3 April before the court that Delhi HC lawyers had raised a further Rs 4 lakh for treatment.

Mohd. Ahmed v. Union of India & Ors.