Days after the Union Health Ministry dumped its plan to set up Rs 100 crore fund for treatment of rare diseases, its research wing, the Indian Council of Medical Research (ICMR) is mulling formation of a task force to promote therapeutic research and expedite new drug development for the sector.
However, Ministry’s U turn after it had announced fund of Rs 100 crore under the National policy for the rare diseases has upset the patients and their families who cannot afford huge treatment cost.
The Ministry recently decided to “reframe” the policy citing bureaucratic hurdles and financial shortage.
Compounding the problem is the fact that there are some rare diseases like Gaucher, MPS, Pompe, Duchenne Muscular Dystrophy, Spinal Muscular Atrophy etc., for which treatment is available but is unaffordable due to exorbitant costs. In many cases, the treatment has been seen to drastically improve the quality of life of a patient. The high cost of treatment, thus, increases inequality with respect to access to treatment for rare disease patients. A senior official from the MInistry said that theI CMR’s task force studies are national initiatives that are centrally planned, coordinated and implemented on a multi-centric basis.
The projects have defined targets and specific timeframe. With the new programme, the ICMR is encouraging researchers in areas such as clinical and molecular genetics, genomics, bioinformatics and new drug development to collaborate and come up with innovative plans to tackle orphan diseases. Infact, the Council has already started accepting proposals from researchers. Apart from R&D, the task force will explore options to improve diagnostic, prenatal diagnostic and counselling facilities across the country.. Short-term training programmes for clinicians to recognise and diagnose rare genetic diseases are also on the cards.
It is estimated that one in 20 Indians is affected by one of the 7,000 diseases listed as rare diseases. Last year, the ICMR had joined hands with AIIMS and JNU to launch the country’s first Rare Disease Registry.
The registry provides patient data on diseases such as lysosomal storage diseases, inborn errors of metabolism, skeletal dysplasias, hematological disorders, neuromuscular disorders, primary immune deficiency.
Rare diseases include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. 80 per cent of rare diseases are genetic in origin and hence disproportionately impact children.
So far about 450 rare diseases have been recorded in India.
It is estimated that one in 20 Indians is affected by one of the 7,000 diseases listed as rare diseases.
The national policy for rare diseases had proposed mechanisms under which the Centre and the states would share treatment expenses for rare diseases in a 60:40 ratio.
