Varun Gandhi. File
| Photo Credit: The Hindu

No affected person has up to now benefitted from a Health Ministry scheme which assures an help of ₹50 lakh to folks with uncommon ailments, BJP MP Varun Gandhi stated on January 7, warning that it endangers the lives of 432 sufferers, primarily kids under six years of age.

“Ten children have died waiting for treatment,” he tweeted, urging Union Health Minister Mansukh Mandaviya to behave instantly by clearing these funds.

In a letter to Mr. Mandaviya, Mr. Gandhi famous that the ‘National Policy for Rare Diseases, 2021’ was launched by the Ministry of Health and Family Welfare on March 30, 2021 to save lots of the lives of sufferers affected by uncommon ailments.

“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 stated.

However, he stated within the letter, even after a number of months of the announcement, not a single affected person has been capable of reap the advantages 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 stated.

According to the Ministry of Health and Family Welfare crowdfunding platform, round 208 Lysosomal Storage Disorder sufferers can instantly be placed on remedy because the Drugs Controller General of India-approved remedies for many of those ailments have been obtainable in India for a lot of yeas, Mr. Gandhi stated.

Despite a number of reminders from the Ministry, he stated, the ten Centres of Excellence (CoEs) constituted below the coverage are but to hunt monetary help for sufferers with uncommon ailments. “According to organisations committed to the cause of rare disease patients, more than half of the CoEs have not sent a single treatment request to the Health Ministry,” he added.

“More than ten children have lost their lives while waiting for treatment. 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,” he stated.