New Delhi: A group of 23 MPS Rajya Sabha met the Minister of Health and Welfare of the Mansukh Mandaviya family and looked for the direct intervention of his ministry to provide treatment to patients who met the requirements diagnosed with rare genetic conditions, a statement said on Wednesday.
They submitted a memorandum to the Minister, caught his attention to the urgent need to prioritize treatment for patients diagnosed with Group 3 genetic conditions (a).
“Apart from the national policy notification that has been awaited for rare disease 2021 in March this year, this patient continues to be at a great risk due to a lack of sustainable funding mechanisms for care,” said parliamentary members.
They asked Mandaviya to extend the Rashtriya Arogya Nidhi (RAN) umbrella scheme to all groups of 3 (a) patients with treatable conditions and transferring funds that were not used from the budget allocation of previous years to provide treatment for treated conditions.
“We want to attract your direct attention to the need to prioritize treatment for at least ultra-rare diseases – treated conditions that have a prevalence that is even lower than others; and where the Indian drug controller (DCGI) approved therapy is available in India , “said Memorandum.
Led by Dr.
Fauzia Khan from the Nationalist Congress Party (NCP) and his party colleagues Vandana Chavan, The Memorandum was signed by lawmakers from several states, including Maharashtra, Kerala, West West, Tamil Nadu, Odisha, Rajasthan and Gujarat.