50 lack financial aid for rare disease patients: Union Health Ministry

New Delhi: Taking a step further in strengthening the facilities for the treatment of rare diseases, the  Ministry of Health and Family Welfare has increased the Financial support from 20 lakh to 50 lakh for the patients suffering from rare diseases under the Umbrella Scheme of Rashtriya Arogaya Nidhi (RAN).

The Rashtriya Arogaya Nidhi (RAN) was set up to provide financial assistance to patients, living below the poverty line and who are suffering from major life threatening diseases, to receive medical treatment at any of the super speciality Hospitals/Institutes or other Government hospitals. The financial assistance to such patients is released in the form of a 'one-time grant', which is released to the Medical Superintendent of the Hospital in which the treatment has been received.

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An office of Memorandum dated 19th May 2022 issued by the Manish Raj, Undersecretary at the Ministry of Health and Family Welfare notified the provision envisaged under Para 10(i) of National Policy for Rare Diseases (NPRD), 2021 that "Financial support upto Rs. 20 lakh under the Umbrella Scheme of Rashtriya Arogoya Nidhi shall be provided by the Central Government for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1). Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana, for their treatment in Government tertiary hospitals only''. May be replaced with "Financial support upto Rs. 50 lakhs shall be provided to the Patients suffering from any category of Rare Diseases. The financial support will be provided to the patients for the treatment in any of the Centre of Excellence (CoE) mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi."

In April 2021, the government has approved the 'National Policy for Rare Diseases 2021', aiming to lower the high cost of treating rare diseases in India. 

The Union Ministry of Health & Family Welfare (MoHFW) has earlier clarified in a press statement that "Beneficiaries for such financial assistance would not be limited to BPL families, but the benefit would be extended to about 40% of the population, who are eligible under Ayushman Bharat- Pradhan Mantri Jan Arogya Yojana (PMJAY). This financial support for the treatment of rare diseases is proposed under the Umbrella Scheme of Rashtriya Arogya Nidhi (RAN) and not under Ayushman Bharat PMJAY.

The guidelines/procedure for providing financial assistance to the patients as per amended provisions are being finalized. However, till the finalization of guidelines and in order to provide uninterrupted and enhanced financial assistance i.e. upto Rs. 50 lakhs to the patients of rare diseases irrespective of the category of disease, funds may continue to be granted from the current budget head of Umbrella Scheme of Rashtriya Arogya Nidhi (RAN), the office memorandum also stated.

The guidelines for RAN signify that the families covered under Ayusman Bharat - Pradhan Mantri Jan Arogya Jojna (PMJAY) will not be eligible for financial assistance under the RAN component.

A number of petitions are being heard by the Delhi High Court related to children with rare illnesses the plea further sought the court's directions to provide children with free treatment as the medical treatment for them was very expensive.

In response, Delhi High Court has directed the premier institute All India Institute of Medical Sciences (AIIMS) to examine medical records of children with Duchenne Muscular Dystrophy (DMD) in order to frame a recommendation on whether beginning the treatment would likely give any results while hearing pleas related to the treatment of children with rare diseases.

Besides, the Rare Diseases Policy also envisages a crowdfunding mechanism in which corporates and individuals are encouraged to extend financial support through a robust IT platform for the treatment of rare diseases. 

The government had previously informed the court that it had established an online crowdfunding platform for collecting funds for the treatment of the children, which was made operational as well. This had come in response to a court order in July last year where it had asked the Union Ministry of Health and Family Welfare to immediately launch a dedicated online crowdfunding platform for collecting funds for the treatment of the children. 

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