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New Delhi, August 18: The Union Health Ministry has asked eight designated hospitals that treat rare diseases to each set up an expert committee, which will decide whether to provide the cash assistance of Rs 50 lakh within a month of receiving the a patient’s request for financial assistance.

The eight Centers of Excellence (CoE) will also receive one-time financial support of up to Rs 5 crore for the purchase of equipment to strengthen patient care services for screening, diagnosis and prevention (prenatal diagnosis). rare diseases based on a gap analysis, according to new guidelines issued by the Ministry of Health.

In addition, other Centers of Excellence will be added for regional outreach if found appropriate in terms of infrastructure and human resources based on the recommendations of the Technical Committee of the Ministry of Health and Welfare. family, as directed. On August 11, the ministry released the guidelines and procedures for providing financial assistance to patients with rare diseases such as thalassemia, haemophilia and sickle cell disease under the National Policy for Rare Diseases ( NPRD), 2021.

On May 19, the ministry increased 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” must be set up in each center of excellence. The nodal head for rare diseases of the hospital will be the secretary member of the committee and the CoE can also opt for an external expert in the panel, if necessary.

Applications received from patients or guardians will first be reviewed by the Nodal Officer and then submitted to the committee for review and approval. The committee will make a decision on the processing and allocation of funds within four weeks of receiving the application.

Employees of Central Government/State/PSU/Autonomous Bodies/Statutory Bodies and their families, who are beneficiaries of any Central Government Scheme, such as CGHS/EHS etc., Government Health Scheme State and any other PSU schemes/autonomous bodies/statutory bodies, will not be eligible for financial assistance in accordance with NPRD, 2021.

There will be no reimbursement of expenses already incurred. Families covered by 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.

The guidelines mentioned that a maximum eligible financial aid under the scheme would be Rs 50 lakh per patient and the financial aid would be given to the relevant CoE, where the patient receives treatment/is admitted for treatment. Financial assistance will not be given directly to the patient, the ministry said.

As provided in the policy, state governments should support patients with these rare diseases (listed in Group 2) that can be managed with special diets or hormonal supplements or other relatively inexpensive interventions. The guidelines also mention the crowdfunding portal, which was set up in August last year to receive such a fund for patients with rare diseases.

Given limited resources and compelling health priorities, it will be difficult for the government to fully fund the treatment of high-cost rare diseases. The gap will be filled by providing financial assistance through crowdfunding, according to the guidelines, adding that a crowdfunding portal “” http://rarediseases.nhp has already been set up to receive such a fund, the guidelines read.

CoEs will share information about patients, the diseases they suffer from and the estimated cost of treatment on the crowdfunding portal. CoEs have the possibility to explore the possibility of obtaining financial support from other agencies/drug manufacturers/business sector in the context of CSR by signing a memorandum of understanding.

The NPRD-2021 provides for a national hospital registry of rare diseases at the ICMR. The registry should provide information on hospital data and disease burden. In order to streamline the process of entering data for various rare diseases, Centers of Excellence have been asked to immediately enroll in the ICMR registry.

There are three groups into which patients diagnosed with rare diseases have been classified. Group 1 includes disorders amenable to a one-time cure, while Group 2 includes diseases requiring long-term lifelong treatment with relatively lower treatment cost and benefits have been documented in the literature and annual or more frequent monitoring is required. In group 3 are the diseases for which a definitive treatment is available, but the challenges are to make an optimal selection of patients for a benefit, a very high cost and a lifelong treatment.

The eight Centers of Excellence are AIIMS, New Delhi; Maulana Azad Medical College, New Delhi; Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow; Postgraduate Institute of Medical Education and Research, Chandigarh; Fingerprint and DNA Diagnosis Center with Nizam Institute of Medical Sciences; King Edward Medical Hospital, Mumbai; Institute of Postgraduate Medical Education and Research, Kolkata; and Human Genetics Center with Indira Gandhi Hospital in Bengaluru.

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