Finalise policy on rare diseases by March 31: HC to Centre

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New Delhi, Jan 28 (PTI) The Delhi High Court on Thursday directed the Centre to finalise by March 31 its new National Health Policy for Rare Diseases of 2020 and make operational the digital platform envisaged under it for crowd funding of the expensive medicines and treatment for rare illnesses.

The direction was issued by Justice Prathiba M Singh while hearing two pleas moved on behalf of two children who are suffering from a rare disease known as Duchenne Muscular Dystrophy (DMD).

Justice Singh said she was issuing the direction to finalise the policy and operationalise the digital platform by March 31 as an affidavit filed by the Health Ministry said that both things were only 'likely' to be done by March 31.

The court also noted in its order that the earlier policy on rare diseases of 2017 was kept in abeyance from December 2018 onwards and the new policy was still awaiting comments from the public and other stakeholders.

The court also asked the ministry to write to the company -- Sarepta Therapeutics in USA -- which manufactures the experimental drug used for treatment of DMD, enquiring whether they would consider providing the medicine free of cost to the two children whose families cannot afford the exorbitantly priced drug.

With these directions, the court listed the matter for hearing on February 4.

During the hearing, the All India Institute of Medical Sciences (AIIMS) told the court that it does not have the funds required to procure the drug for the two children as crores of funds were to be released to it by the central government. PTI HMP RKS RKS