A group of 23 Rajya Sabha MPs met with Union Health and Family Welfare Minister Mansukh Mandaviya and sought immediate intervention from his ministry to treat the eligible patients with rare genetic disorders, a statement said on Wednesday.
They submitted a memorandum to the minister drawing attention to the urgent need to prioritize the treatment of patients diagnosed with group 3(a) rare genetic disorders.
“Despite the notification of the much anticipated 2021 National Policy on Rare Diseases 2021 in March this year, these patients are still at high risk due to the lack of a sustainable funding mechanism for treatment,” the MPs said.
They requested Mr. Mandaviya to extend the umbrella program of Rashtriya Arogya Nidhi (RAN) to all group 3(a) patients with treatable conditions and to carry over the unspent funds from the budget allocation from previous years to cover the treat eligible patients with treatable conditions.
“We would like to draw your immediate attention to the need to prioritize the treatment of at least the ultra-rare diseases – treatable conditions that have an even smaller prevalence compared to others; and for which the Drugs Controller General of India (DCGI) has approved therapies are available in India,” the memorandum said.
Led by Nationalist Congress Party (NCP) Dr Fauzia Khan 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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