Updated: August 12, 2021 11:11:34 am
Led by NCP MP Dr Fauzia Khan and her party colleague Vandana Chavan, a memorandum was signed by members of Parliament from several states seeking immediate intervention of the Union government to provide treatment to eligible patients diagnosed with Group 3 (a) rare genetic conditions, like Lysosomal Storage Disorders (LSDs).
A group of 23 Rajya Sabha MPs from Maharashtra, Kerala, West Bengal, Tamil Nadu, Odisha, Rajasthan and Gujarat met Union Health and Family Welfare Minister Mansukh Mandaviya on Tuesday. The group submitted the memorandum to the minister urging him to prioritise the treatment for patients diagnosed with Group 3(a) rare genetic conditions.
“Despite the notification of the much-awaited National Policy for Rare Diseases 2021 in March this year, these patients continue to be at grave risk due to the lack of any sustainable funding mechanism for treatment,” the MPs said in the memorandum.
The MPs requested Mandaviya to extend the Umbrella Scheme of Rashtriya Arogya Nidhi (RAN) to all Group 3(a) patients with treatable conditions and transfer the unspent funds from the previous years’ budgetary allocation to provide treatment for the eligible patients diagnosed with treatable conditions.
“Several countries – including developing economies like Brazil, Argentina, Algeria, and Egypt – have robust reimbursement mechanisms in place (often 100 per cent) for dealing with rare diseases, or have earmarked funds out of their healthcare budgets specifically for these purposes,” the members wrote, saying that unlike diabetes or any other common ailment, the number of rare disease patients is very small. Without any support from the government, parents of these children are left with no option but to look on in despair, despite the availability of approved therapies in India.”
While the MPs welcomed the government’s efforts to mobilise funds through crowdfunding but since it would take time, they requested the minister to immediately look into the condition of nearly 200 patients with rare diseases.
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