Indian government directed by Court to notify health policy for rare diseases

The Delhi High Court in India has set out three major directives with regard to patients suffering from rare diseases.

The Court has asked the government to finalize the long-pending National Health Policy for Rare Diseases; the setting up of a National Consortium for Research and Development on therapeutics for Rare Diseases; and the setting up for a Rare Diseases Committee which would manage and utilize a Rare Disease Fund.

It has also directed the government to finalize and notify the National Policy for Treatment of Rare Diseases on or before March 31, 2021.

Justice Prathiba Singh ordered the setting up of National Consortium for Research, Development and Therapeutics for Rare Diseases to look after R&D of indigenous treatment for rare diseases, manufacturing of drugs, and inclusion of people in clinical trials.

According to the court order, the Committee has to examine the applications of patients suffering from rare diseases and recommend treatment and funding.

Noting the government inaction, the Court had formed an expert committee to look at possible solutions to the rare diseases problem including immediate treatment options and crowdfunding costs.

Accessible and affordable treatment not easily available