23 MPs take up cause of patients with rare genetic conditions

New Delhi,  A group of 23 MPs from the Rajya Sabha met Union Health and Family Welfare Minister Mansukh Mandaviya seeking the ministry’s immediate intervention to provide treatment to eligible patients diagnosed with Group 3 (a) rare genetic conditions, like Lysosomal Storage Disorders (LSDs).

The Parliamentary group also submitted a memorandum to Mandaviya, drawing his attention to the urgent need for prioritisation of 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.

“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, requesting the Union Minister to: (a) Extend the Umbrella Scheme of Rashtriya Arogya Nidhi (RAN) to all Group 3 (a) patients with treatable conditions, and (b) Transfer the unspent funds from the previous years’ budgetary allocation to provide treatment for eligible patients diagnosed with treatable conditions.

“Several countries, including the 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, explaining 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,” the statement said.

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

“While we welcome the Government of India’s efforts to mobilise funds through crowdfunding and involving corporate India and the PSUs, this process may take some time. Through this joint representation, we would like to draw your immediate attention to the condition of close to 200-odd eligible patients — diagnosed with Group 3(a) disorders — whose lives are at risk owing to the long delay in providing support for treatment,” they stated.