Notified New Policy on Rare Diseases, Approved Budget of Rs
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The Centre told the Delhi High Court that it has notified the National Health Policy for Rare Diseases and transferred Rs four crore to AIIMS while approving a budget estimate of Rs 25 crore for the year 2021-22, all towards treatment of such ailments. Apart from these, the Health Ministry said that it has also written to the All India Institute of Medical Sciences (AIIMS) to create a consortium of Centre of Excellences.

The submissions were made in an affidavit, the ministry has said that it has also written to the Secretary of Department of Health Research to form the NCRDT which along with the Centres of Excellence are also part of the new policy on rare diseases. The ministry further said that the policy also provides for setting up a committee on rare diseases in AIIMS and communication in this respect has been sent to the premier hospital and the Centres of Excellence.

The funds allocated for the purpose in the financial year 2020-21 were unutilised and lapsed. Rs 4.10 crore under the rare disease component of the umbrella scheme of Rashtriya Arogya Nidhi has been remitted to AIIMS. Besides that there is an option of crowdfunding to supplement the funds. AIIMS told the court that the rare diseases committee has been set up and it shall examine the cases of the petitioners and others who suffer from such ailments.

Advocate Ashok Agarwal, who appeared for several of the petitioner children, said one of the rare diseases was muscular dystrophy which is considered as a disability under the Rights of Persons with Disabilities (RPWD) Act of 2016 and there is a fund available under the statute for its treatment.

The court asked AIIMS to file a report regarding the status of setting up Centres of Excellence. The court also sought the ministry's stand on Agarwal's contention of funds being available under the RPWD Act. The ministry in its affidavit also said, "It is submitted that manufacturing of drugs will be done by public and private sector pharmaceutical companies and further the approvals for new drugs are provided by Drugs Controller General of India under the New Drugs and Clinical Trial Rules, 2019".

It further said that rare diseases patients are provided treatment under RAN, which is a specific scheme for poor patients living below threshold poverty line. "Therefore, the amount marked under the RAN cannot be used for research due to an existing approved mandate. It is further submitted that the fund raised through crowdfunding, is to be utilized firstly for the treatment of rare diseases and further funds can be made available for research also after meeting treatment cost," it said.

The high court was hearing various pleas filed on behalf of children suffering from rare diseases, including DMD and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), and seeking direction to the Centre to provide them uninterrupted and free of cost treatment as the therapy is very expensive.

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