Varun Gandhi to Mandaviya: No Patient Benefited from Rs 50 Lakh Help Scheme for Rare Disease Patients

GG News Bureau

New Delhi, 7th Jan. No patient has so far benefited from a health ministry scheme that guarantees Rs 50 lakh in assistance to people with rare diseases, BJP MP Varun Gandhi said on Saturday, warning that it endangers the lives of 432 patients, the majority of whom are children under the age of six.

Ten children have died while waiting for treatment, he said on Twitter, urging Union Health Minister Mansukh Mandaviya to act quickly by clearing these payments.

Gandhi stated in a letter to Mandaviya that the Ministry of Health and Family Welfare launched the ‘National Policy for Rare Diseases, 2021’ on March 30, 2021 to save the lives of patients suffering from rare diseases.

According to an amendment made in May 2022, all groups of rare disease patients are guaranteed financial assistance of Rs 50 lakh for treatment, he says.

However, he stated in the letter that even after several months of the announcement, not a single patient has been able to benefit from this scheme, putting “the survival of 432 patients, primarily children under the age of six” at risk.

According to him, the majority of these children have Lysosomal Storage Disorders (LSD) such as gaucher, pompe, MPS I, MPS II, and fabry disease.

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 years, Gandhi said.

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 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.

“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.