| Mumbai |
Published: January 14, 2020 3:29:32 am
The Union Ministry of Health and Family Welfare Monday printed a nationwide policy for treatment of rare diseases, itemizing 450 diseases as rare however not offering an in depth roadmap on treatment.
The policy additionally intends to kick-start a registry of rare diseases that Indian Council of Medical Research will preserve.
In India, Haemophilia, Thalassemia, Sickle cell anaemia and Primary Immuno Deficiency in kids, auto-immune diseases, Lysosomal storage problems similar to Pompe illness and Gaucher’s illness are within the rare diseases listing. The newest policy creates three classes of rare diseases — diseases requiring one-time healing treatment, diseases which want long-term treatment however the associated fee is low, and diseases that require life-long treatment and the associated fee is excessive.
The policy states that the Centre will present help of Rs 15 lakh to sufferers affected by rare diseases that require one-time healing treatment underneath the Rashtriya Arogya Nidhi scheme. The treatment is proscribed to beneficiaries of Pradhan Mantri Jan Arogya Yojana. Some diseases on this class are osteopetrosis, immune deficiency problems and Lysosomal Storage Disorders.
Manjit Singh, president of Lysosomal Storage Disorder Support Society, mentioned the help is “highly inadequate”. “The government claims it will provide financial assistance for children only till the age of two years for lysosomal disorders. Even that amount will not last for more than a month. One-time treatment will not help,” Singh mentioned.
According to Health Ministry, about 95 per cent rare diseases haven’t any authorised treatment. “Less than one in 10 patients receives disease-specific treatment,” the policy states.
The Centre first ready such a policy in 2017, however appointed a committee in 2018 to overview it.
Presently, only a few pharmaceutical corporations manufacture medication to deal with rare diseases and India has no home producer. The policy estimates that for a toddler weighing 10 kg, treatment value ranges between Rs 10 lakh and Rs 1 crore per yr, and the associated fee rises with age.
The policy has advisable that state governments assist sufferers belonging to the second class of diseases that embrace Phenylketonuria and Galactosemia, amongst others. It additionally recommends crowd funding as a supply to fund treatment of rare diseases and advises hospitals to report such instances on digital platforms to collect funds. “The policy is at least beginning of a discussion on rare diseases in the country. But last time they announced a Rs 100-crore corpus fund, now there is no budget. There is no clarity of Centre and State responsibilities and on category III patients,” mentioned Prassana Shirol, founder of Organisation for Rare diseases India.