Experts stress on importance of rare diseases policy

The Ministry of Health and Family Welfare took the landmark step of approving the National Policy for Treatment for Rare Diseases owing to various challenges associated with rare diseases like lack of awareness, the dearth of diagnostic facilities and inability to manage the treatment cost. The policy, which is quite comprehensive, covers all the important aspects related to rare diseases. “The policy puts forth robust guidelines, and a lot of developments have taken place in the past one year. However, as is the case with every policy, the full-fledged implementation of this policy, too, will take time,” said Dr Sujatha Jegadeesh, head of the Department of Clinical Genetics at Mediscan.

Stating that the national policy is an indication that the government has recognised rare diseases as a health issue, she added, “This can be attributed to relentless work done by all the stakeholders involved, including the healthcare fraternity.” Besides initiatives taken up by various states since the policy was introduced, the Tamil Nadu government hopes to set up a diagnostic facility for approximately Rs 10 crore to identify rare diseases,” said advocate Ashok Agarwal, a social jurist who has been filing petitions for rare disease patients.

While there are developments, there still are gaps which need to be filled. Manjit Singh, president, Lysosomal Storage Disorders Society said, “The implementation has not yet started.

The rare disease cell has received about 100 applications from across India during the last six months, but there has been no headway on them.

The onus has been put on the states to scrutinise individual cases and provide recommendations with respect to the line of treatment.”