'10 children died waiting for treatment': Varun Gandhi from Mandaviya

BJP MP Varun Gandhi urged Health Minister Mansukh Mandaviya to clear these payments immediately.

BJP MP Varun Gandhi on Saturday wrote a letter to Union Health Minister Mansukh Mandaviya, claiming that no patient has so far benefited from the health ministry's scheme that provides Rs 50 lakh assistance to people with rare diseases. Gives assurance

He said ten children had died while waiting for treatment and urged the health minister to clear these payments immediately.

“Last year, the government assured financial assistance of ₹50 lakh to every rare disease patient. So far not a single patient has got the benefit of this scheme. 10 children have died while waiting for treatment. I request Shri @mansukhmandviya to clear these payments immediately," Varun Gandhi tweeted.

Last year, the government had assured financial assistance of ₹50 lakh to every rare disease patient.

So far not a single patient has got the benefit of this scheme. 10 children have died while waiting for treatment.

I request Shri @mansukhmandviya to take action by clearing these payments immediately.

— Varun Gandhi (@varungandhi80) January 7, 2023

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

As per an amendment made to it in May, 2022, all groups of rare disease patients were assured financial assistance of ₹50 lakh for treatment, he said.

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

He said that most of these children are suffering from Lysosomal Storage Disorders (LSD) like Gaucher, Pompe, MPS I, MPS II and Fabry disease.

According to the crowdfunding platform of the Ministry of Health and Family Welfare, around 208 lysosomal storage disorder patients can be put on therapy immediately as treatments for most of these diseases, approved by the Drugs Controller General of India, have been available in India for several years, read the letter. .

He said that despite several reminders from the ministry, the 10 Centers of Excellence (CoEs) set up under the policy are yet to avail financial assistance for patients with rare diseases.

He said that according to organizations committed to rare disease patients, more than half of the CoEs have not sent a single treatment request to the health ministry.

"More than ten children have lost their lives waiting for treatment. So I request that the treatment of these 208 children be started immediately in the centers of excellence. I hope you will consider this matter seriously as no Any kind of delay will result." Many more children lost their lives," he said.