NEW DELHI: Up to Rs. 50 lakh per patient has been provided for treatment of rare diseases, said Anupriya Singh Patel, Union Minister of State for Health and Family Welfare, in a written reply in the Lok Sabha on Friday.
The National Policy for Rare Diseases (NPRD) was launched by the Ministry of Health and Family Welfare in March 2021.
Since then, "a total of 1, 118 patients have benefited, ” Patel informed.
“The financial support of up to Rs. 50 lakh per patient is provided for the treatment at the notified centres of excellence (CoEs) for rare diseases, ” the minister added.
Based on the recommendation of the Central Technical Committee for Rare Diseases (CTCRD), presently 63 rare diseases are included under NPRD, Patel said.
There are also 12 CoEs, where patients can register themselves to avail the financial assistance.
The CoEs include premier Government tertiary hospitals that come with facilities for the diagnosis, prevention, and treatment of rare diseases.
There are about 7, 000 known rare diseases, affecting around 8 per cent of the world’s population. About 75 per cent of rare disease patients happen to be children.
The NPRD identifies and categorises rare diseases into 3 groups: disorders that can be controlled to one-time curative treatment; those that require long-term/lifelong treatment with a relatively lower cost of treatment; and those that need definitive treatment but challenges are to make an optimal patient selection for benefit, very high cost, and lifelong therapy.
“The Ministry of Health and Family Welfare has obtained exemption from the Department of Expenditure on Goods & Services Tax (GST) and Basic Customs Duty on drugs imported for Rare Diseases for individual use and through CoE, ” Patel said.
Further, she informed that a National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) has also been established to streamline research activities for rare diseases.