‘10 children died waiting for treatment’: Varun Gandhi to Mandaviya
2 min read . Updated: 07 Jan 2023, 01:53 PM IST
PremiumBJP MP Varun Gandhi urged Health Minister Mansukh Mandaviya to act immediately by clearing these payments.
BJP MP Varun Gandhi on Saturday wrote a letter to Union Health Minister Mansukh Mandaviya, claiming that no patient has so far benefitted from a health ministry scheme which assures an assistance of ₹50 lakh to people with rare diseases.
He said that ten children have died waiting for the treatment and urged the Health Minister to act immediately by clearing these payments.
“Last year, the govt assured financial assistance of ₹50 lakh to every rare disease patient. So far, not a single patient has benefited from this scheme. 10 children have died waiting for treatment. I request Shri @mansukhmandviya to act immediately by clearing these payments," Varun Gandhi tweeted.
In a letter to Mandaviya, the BJP MP 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, 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", he said in the letter.
Most of these children suffer from Lysosomal Storage Disorders (LSD) such as gaucher, pompe, MPS I, MPS II and fabry disease, he added.
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, the letter read.
Despite several reminders from the ministry, he said, the 10 Centers of Excellence (CoEs) constituted under the policy are yet to seek financial assistance for patients with rare diseases.
According to organizations 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.
"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 said.
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