No patient suffering from a rare disease has benefitted from a Union government policy that assures them financial support, Bharatiya Janata Party MP Varun Gandhi said on Saturday.
Ten children have died waiting for treatment, Gandhi said in a letter to Union Health Minister Mansukh Mandaviya, urging him to provide financial support under the scheme.
The Lok Sabha MP from Pilibhit constituency was referring to National Policy for Rare Diseases, 2021, that is aimed at helping families from prohibitively high and often catastrophic expenses for treating rare diseases.
The World Health Organization defines a rare disease as a debilitating lifelong disease or disorder with a prevalence of one or less among every 1,000 persons. There are over 7,000 rare diseases that have been recognised so far across the world.
In May, the government had made an amendment to the policy, assuring a financial assistance of Rs 50 lakh for the treatment, Gandhi said in his letter.
Noting that there are 432 patients that fall under the ambit of the policy, he claimed that the government’s inaction has threatened their survival, most of them children.
He added that many of these children suffer from a variety of Lysosomal Storage Disorders. The disease defective functioning of lysosomes, the organelles that contain enzymes used to intracellular digestion and are used for removing dead cells as well as help in processes such as protein synthesis and fertilisation.
Gandhi said there are 208 Lysosomal Storage Disorder patients that can receive treatment but the 10 Centers of Excellence formed under the 2021 policy have not sought financial assistance for them.
“According to organisations committed to the cause of rare disease patients, more than half of the Centres of Excellence have not sent a single treatment request to the Ministry of Health and Family Welfare,” the MP said.
He added: “Therefore, I request that the treatment of these 208 children at the Centres of Excellence start immediately. I hope you will consider this matter seriously, as any delay in this regard will result in the loss of lives of many more children.”
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