No affected person benefitted from well being ministry scheme to deal with uncommon illness: Varun Gandhi to Mandaviya
3 min readBy PTI
NEW DELHI: No affected person has thus far benefitted from a well being ministry scheme which assures an help of Rs 50 lakh to folks with uncommon illnesses, BJP MP Varun Gandhi mentioned on Saturday, warning that it endangers the lives of 432 sufferers, primarily youngsters under six years of age.
Ten youngsters have died ready for therapy, he tweeted, urging Union Health Minister Mansukh Mandaviya to behave instantly by clearing these funds.
In a letter to Mandaviya, 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 avoid wasting the lives of sufferers affected by uncommon illnesses.
According to an modification made to this in May, 2022, all teams of uncommon illness sufferers have been assured a monetary help of Rs 50 lakh for therapy, he mentioned.
However, he mentioned 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 those youngsters undergo from Lysosomal Storage Disorders (LSD) similar to gaucher, pompe, MPS I, MPS II and fabry illness, he mentioned.
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 illnesses have been accessible in India for a lot of yeas, Gandhi mentioned.
Despite a number of reminders from the ministry, he mentioned, the ten Centers of Excellence (CoEs) constituted below the coverage are but to hunt monetary help for sufferers with uncommon illnesses.
According to organisations dedicated to the reason for uncommon illness sufferers, greater than half of the CoEs haven’t despatched a single therapy request to the well being ministry, he added.
“Over 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 mentioned.
NEW DELHI: No affected person has thus far benefitted from a well being ministry scheme which assures an help of Rs 50 lakh to folks with uncommon illnesses, BJP MP Varun Gandhi mentioned on Saturday, warning that it endangers the lives of 432 sufferers, primarily youngsters under six years of age.
Ten youngsters have died ready for therapy, he tweeted, urging Union Health Minister Mansukh Mandaviya to behave instantly by clearing these funds.
In a letter to Mandaviya, 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 avoid wasting the lives of sufferers affected by uncommon illnesses.
According to an modification made to this in May, 2022, all teams of uncommon illness sufferers have been assured a monetary help of Rs 50 lakh for therapy, he mentioned.
However, he mentioned 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 those youngsters undergo from Lysosomal Storage Disorders (LSD) similar to gaucher, pompe, MPS I, MPS II and fabry illness, he mentioned.
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 illnesses have been accessible in India for a lot of yeas, Gandhi mentioned.
Despite a number of reminders from the ministry, he mentioned, the ten Centers of Excellence (CoEs) constituted below the coverage are but to hunt monetary help for sufferers with uncommon illnesses.
According to organisations dedicated to the reason for uncommon illness sufferers, greater than half of the CoEs haven’t despatched a single therapy request to the well being ministry, he added.
“Over 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 mentioned.
