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‘National policy for rare diseases a welcome step, challenges ahead’

Experts have welcomed the government’s decision to approve the National Policy for the Treatment of Rare Diseases, the draft of which was submitted by the Union Ministry of Health to the Delhi High Court on 25 May. However, they feel that the expensive and prohibitive nature of the treatment with no insurance coverage, untimely diagnosis, and delay in implementation of the policy are among few of the challenges that need to be addressed. The policy saw the light of day after multiple representations to the Central Government and the Ministry of Health and Family Welfare were made since 2009 by lawyers and organisations working for the treatment of rare diseases.

A rare disease, comprising rare tumors and genetic diseases like Gaucher Syndrome, Hunter Syndrome and Pompe, is a health condition which has low prevalence and affects a small number of people. Speaking to The Sunday Guardian, experts noted that 50% of the afflicted are children—70% of whom die aged between one and seven due to lack of effective treatment. According to reports, at least 7 crore Indians suffer from over 14,000 rare diseases identified worldwide.

The policy recommends an initial corpus of Rs 100 crore for the treatment of genetic disorders, but excludes rare blood disorders like Thalassemia and sickle-cell anemia. While some health experts have questioned the feasibility of the allocated amount, Manjit Singh, president, Lysosomal Storage Disorders Support Society (LSDSS), believes that the Centre to state ratio of 60:40 in the corpus will ensure that the burden is not solely on the annual budget.“The corpus is okay to start with. Also, it’s not that the government lacks funds; the allocation and utilisation is not optimum and is misused. Many states that surrender their unutilised funds back to the Centre need to channel them into this,” he added.

Delhi High court orders in three writ petitions in 2013 and 2016, advocated by lawyer Ashok Aggarwal, had directed the Health Ministry to frame a national policy for rare diseases. “The government did understand the subject, but took no action. The centre passed the buck on the states by saying that the health is a state subject and they should carve out funds under different health schemes like National health Mission, leading to unnecessary delays,” Singh said.

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