The Union Health Ministry has asked each of the eight designated hospitals that treat rare diseases to set up an expert committee to decide on providing a cash aid of Rs 50 lakh within a month of receiving an application for financial assistance from a patient.
The eight Centres of Excellence (CoEs) will also be given one-time financial support up to Rs 5 crore for procurement of equipment for strengthening patients care services for screening, diagnosis and prevention (prenatal diagnosis) for rare diseases based on a gap analysis, according to the new guidelines issued by the health ministry.
Also, more CoEs will be added for regional outreach if they are found to be suitable in terms of infrastructure and human resources based on recommendations of the Technical Committee of the Ministry of Health and Family Welfare, the guidelines said.
The Ministry on August 11 issued the guidelines and procedures for granting financial assistance to patients suffering from rare diseases as thalassemia, haemophilia, and sickle cell anaemia under the National Policy for Rare Diseases (NPRD), 2021. The ministry on May 19 increased the financial support from Rs 20 lakh to Rs 50 lakh for patients belonging to all categories of rare diseases. According to the guidelines, a 'Rare Disease Committee' is to be constituted in each CoE. The nodal officer for rare disease of the hospital will be the member secretary of the committee and the CoE may also opt for an outside expert on the panel, if required.
The applications received from the patients or guardians will first be scrutinized by the nodal officer, and thereafter placed before the committee for consideration and approval.
There will be no reimbursement of expenditure already incurred. Families covered under Ayushman Bharat - Pradhan Mantri Jan Arogya Yojna (AB-PMJAY) will also be eligible for financial assistance as per NPRD, 2021, if the disease is not covered under AB-PMJAY packages.
Keeping in view the resource constraint and compelling health priorities, it will be difficult for government to fully finance treatment of high cost rare diseases. The gap will be filled up by providing financial assistance through crowdfunding, the guidelines said, adding a crowdfunding portal "http://rarediseases.Nhp.Gov.In/"http://rarediseases.Nhp.Gov.In has already been created for receiving such fund, the guidelines read.