The Delhi High Court on Tuesday asked the Center to finalize the National Health Policy for patients with rare diseases. At the same time, the court has also directed to establish a national association for research, development and medical science for such diseases.

The Bench has also asked the Central Government to consider raising the budget for rare diseases for the upcoming financial year 2021-22 . This order states that this budget policy should be related to providing financial incentives for the manufacture of drugs and contributing to the treatment of rare diseases.

In an interim order on petitions regarding children suffering from rare diseases, the bench of Justice Pratibha M Singh said that apart from the policy as part of the policy, a committee at AIIMS as well as a fund for such diseases should be set up needed. It said that the policy should include and research on the Department of Biotechnology, Indian Council of Medical Research, Council of Scientific and Industrial Research, Drugs Controller General of India and other relevant ministries and departments. Research should involve individuals in the development of indigenous treatment, drug formulation, and clinical trials.

The High Court directed that the National Health Policy for Rare Diseases, 2020 be finalized by the Government of India on or before 31 March. It should also be notified as well. An affidavit was filed in this case by the Ministry of Health and Family Welfare. After which this order was passed. The bench said that the order should be part of the policy.

The order of the Bench states that AIIMS will set up a committee with which a decision will be taken in two weeks on the arrival of patients of such diseases. This committee will decide in four weeks how much the treatment will cost. Also, the order said that the budget of rare diseases for the last three years should be immediately transferred to the Fund for Rare Diseases.

The management, maintenance and utilization of this fund will be monitored by the nodal officer of AIIMS. The fund will be linked to the digital platform. If any outsider or company wants to help in this fund, then provision should also be made for this. The bench has fixed April 19 for the next hearing in the case.


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