The Ministry of Health and Family Welfare has formulated a national policy for treatment of rare diseases in India to progressively build India’s capacity to respond comprehensively to rare diseases.
The medical fraternity in Pune has welcomed this initiative saying that it is encouraging for the medical fraternity and it will be lend a helping hand to the needy patients.
The policy includes the provisions of providing financial support to eligible patients, training doctors, facilitating research, development of drugs for treatment, diagnostics at affordable prices, measures for making drugs of rare diseases available at affordable prices and development of centres of excellence.
The information was given by Anupriya Patel, Minister of State, Ministry of Health and Family Welfare, in a written reply in the Lok Sadha on Friday. The policy also recognises the role of various ministries and departments in the areas of rare diseases.
Under the policy, a corpus fund of Rs 100 crore at central level would be set up towards funding treatment of rare genetic disease. It also proposes similar corpus fund at state level.
Dr Prakash Marathe, President of IMA, Pune, said, “Cases of rare diseases are neglected by doctors many times. In western countries, research labs are attached to the hospitals, due to which rare cases are well researched and reported. This kind of policy would bring in a similar approach here in India. If the private sector lacks resources for carrying out research in this field, the government’s support and resources would help to build a capacity while treating rare cases.”
“Also, a dedicated fund for helping the patients is welcome step, as the treatment would then be effectively made available even to the poorest patients with rare diseases,” he added.
Dr Sharad Agarkhedkar, Head of Paediatric Department at D Y Patil Medical College, Pune, said, “This is a welcome move and it should have been done ago. We do not have any national repository of rare cases. This initiative would help in addressing that concern. It would help in preventing mortality and preventing spread of the disease to the next generation. Rare cases are seen in metabolic errors, brain conditions etc.”
He further added, “If research is encouraged and a repository is created, we can easily identify factors leading to the disease and standard treatment given. This is now done in the case of International Repository of Disease. Then, any rare disease can be traced to its genetic, community and geography based connections” .