Govt publishes policy for treatment of rare diseases
The Union Ministry of Health and Family Welfare Monday published a national policy for treatment of rare diseases, listing 450 diseases as rare but not providing an in depth roadmap on treatment.
The policy also intends to kick-start a registry of rare diseases that Indian Council of Medical Research will maintain.
In India, Haemophilia, Thalassemia, red blood cell anaemia and first Immuno Deficiency in children, auto-immune diseases, Lysosomal storage disorders like Pompe disease and Gaucher’s disease are within the rare diseases list. the newest policy creates three categories of rare diseases — diseases requiring one-time curative treatment, diseases which require long-term treatment but the value is low, and diseases that need life-long treatment and therefore the cost is high.
The policy states that the Centre will provide assistance of Rs 15 lakh to patients affected by rare diseases that need one-time curative treatment under the Rashtriya Arogya Nidhi scheme. The treatment is restricted to beneficiaries of Pradhan Mantri Jan Arogya Yojana. Some diseases during this category are osteopetrosis, immune deficiency disorders and Lysosomal Storage Disorders.
Manjit Singh, president of Lysosomal Storage Disorder Support Society, said the help is “highly inadequate”. “The government claims it'll provide financial assistance for youngsters only till the age of two years for lysosomal disorders. Even that quantity won't last for quite a month. One-time treatment won't help,” Singh said.
According to Health Ministry, about 95 per cent rare diseases haven't any approved treatment. “Less than one in 10 patients receives disease-specific treatment,” the policy states.
The Centre first prepared such a policy in 2017, but appointed a committee in 2018 to review it.
Presently, only a few pharmaceutical companies manufacture drugs to treat rare diseases and India has no domestic manufacturer. The policy estimates that for a toddler weighing 10 kg, treatment cost ranges between Rs 10 lakh and Rs 1 crore per annum , and therefore the cost rises with age.
The policy has recommended that state governments support patients belonging to the second category of diseases that include Phenylketonuria and Galactosemia, among others. It also recommends crowd funding as a source to fund treatment of rare diseases and advises hospitals to report such cases on digital platforms to collect funds. “The policy is a minimum of beginning of a discussion on rare diseases within the country. But last time they announced a Rs 100-crore corpus fund, now there's no budget. there's no clarity of Centre and State responsibilities and on category III patients,” said Prassana Shirol, founding father of Organisation for Rare diseases India.