Children below six years of age are among 432 patients – suffering from rare diseases – who have not been able to get the benefits of a government scheme formulated last year as their survival is threatened, BJP MP Varun Gandhi has said in a letter he wrote to Union Health Minister Mansukh Mandaviya. Under the National Policy for Rare Diseases, the BJP leader underlined, all patients were assured financial assistance of ₹50 lakh. “Last year, the government 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. (sic),” Varun Gandhi wrote in a tweet. “I request Shri @mansukhmandviya to act immediately by clearing these payments.”
In his letter, Gandhi insisted that these children would need immediate care as he wrote: “Most of these children suffer from Lysosomal Storage Disorders (LSD) such as Gaucher, Pompe, MPS 1, 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 (DCGI) approved treatments for most of these diseases have been available in India for many years now.”
Stressing that “despite several reminders from the Ministry”, 10 Centres of Excellence are yet to seek financial assistance, Varun Gandhi has urged the central government to ensure urgent treatment of 208 children. More than half of the Centers of Excellence, he claimed, have not sent a single treatment request to the Ministry of Health and Family Welfare, citing “organizations committed to the cause of rare disease patients”.
“I hope you will consider this matter seriously as any delay in this matter will result in the loss of lives of many more children,” he wrote to the Union Health Minister in his letter. The National Policy for Rare Diseases was formulated and launched by the Ministry of Health and Family Welfare on March 30, 2021, to save the lives of patients suffering from rare diseases. As per the amendment to this policy in May 2022, all groups of rare disease patients were assured financial assistance of ₹50 lakh for treatment.
