No patient benefitted from ₹50 lakh Health Ministry scheme that helps patients with rare diseases: Varun Gandhi

“Ten children have died waiting for treatment,” Varun Gandhi tweeted, urging Union Health Minister Mansukh Mandaviya to act immediately by clearing these payments.

No patient has so far benefitted from a Health Ministry scheme which assures an assistance of ₹50 lakh to people with rare diseases, BJP MP Varun Gandhi said on January 7, warning that it endangers the lives of 432 patients, mainly children below six years of age.

“Ten children have died waiting for treatment,” he tweeted, urging Union Health Minister Mansukh Mandaviya to act immediately by clearing these payments.

In a letter to Mr. Mandaviya, Mr. Gandhi noted that the 'National Policy for Rare Diseases, 2021' was launched by the Ministry of Health and Family Welfare on March 30, 2021 to save the lives of patients suffering from rare diseases.

“According to an amendment made to this in May, 2022, all groups of rare disease patients were assured a financial assistance of ₹50 lakh for treatment,” he said.

However, he said in the letter, even after several months of the announcement, not a single patient has been able to reap the benefits of this scheme, "threatening the survival of 432 patients, mainly children below six years of age".

“Most of these children suffer from Lysosomal Storage Disorders (LSD) such as gaucher, pompe, MPS I, MPS II and fabry disease,” he said.

According to the Ministry of Health and Family Welfare crowdfunding platform, around 208 Lysosomal Storage Disorder patients can immediately be put on therapy since the Drugs Controller General of India-approved treatments for most of these diseases have been available in India for many yeas, Mr. Gandhi said.