23 MPs meet health minister over treatment to patients with rare genetic conditions

They submitted a memorandum to the Minister, drawing his attention to the urgent need for prioritisation of treatment for the patients diagnosed with Group 3(a) rare genetic conditions

A group of 23 Rajya Sabha MPs met Union Health and Family Welfare Minister Mansukh Mandaviya and sought his ministry’s immediate intervention to provide treatment to the eligible patients diagnosed with rare genetic conditions, a statement said on Wednesday.

They submitted a memorandum to the Minister, drawing his attention to the urgent need for prioritisation of treatment for the 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.

They requested Mr. 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.

"We would like to draw your immediate attention towards the need to prioritise treatment for at least the ultra-rare diseases —treatable conditions which have an even lesser prevalence as compared to others; and for which the Drugs Controller General of India (DCGI) approved therapies are available in India," the memorandum stated.

Led by Dr Fauzia Khan of the Nationalist Congress Party (NCP) and her party colleague Vandana Chavan, the memorandum was signed by MPs from several States, including Maharashtra, Kerala, West Bengal, Tamil Nadu, Odisha, Rajasthan and Gujarat.

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