The digital portal for crowdfunding and voluntary donations for patients of rare diseases shows collection of just Rs 2.9 lakh while 1,131 patients of rare diseases have registered for funding, of which 50 are registered as being in urgent need of donation.
With this approval, patients with rare diseases can now access the therapy at a significantly reduced cost of INR 0.3- 0.6 million (US$ 0.0037- 0.0073 million), which is 100 times less than the imported medicines. Over the next few months, the Indian Ministry will also be releasing medications for additional rare illnesses, such as hyperammonaemia and phenylketonuria.
In India, Fabry is one of the rare diseases notified under Group 3(a) of the National Policy for Rare Diseases 2021, which is one of the Lysosomal Storage Disorders. It is time to prioritize and address the issues of under diagnosis of Fabry disease in India and providing patients with timely intervention and treatment
WHO defines a rare disease as one with a frequency of less than 6.6 to 10 per 1000 population. There are around 7000 conditions included in the rare diseases category.
The budget allocation for the financial year 2022-2023 for rare diseases was Rs 25 crore. Rest of the 2.80 crore will soon be disbursed for the treatment of rare disease patients. The guidelines mentions that a maximum financial assistance admissible under the scheme will be up to Rs 50 lakh per patient and the financial assistance per patient will be given to the concerned CoE, where the patient is getting treatment.
The health minister, meanwhile, said under the NPRD, provision had been made for treatment costs up to Rs 50 lakh per patient, irrespective of any group of rare diseases. He said this provision was irrespective of the economic category of a patient.
The court said that several factors merited consideration of the competent authority on whether the expenses which are likely to be incurred in the course of administering the drug to the 54 enrolled patients would stand covered under its order.
Beneficiaries for such financial assistance will not be limited to BPL families, but the benefit will be extended to about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana, the health ministry said in the statement.
The draft policy proposes to set up a registry under the Indian Council of Medical research (ICMR) to create a database and provide financial assistance of up to Rs 15 lakh to Ayushman Bharat beneficiaries for rare diseases that require a one-time treatment in tertiary hospitals only.
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