Bharatiya Janata Party (BJP) leader and Lok Sabha MP Varun Gandhi on Saturday in an official letter to Union Health Minister Mansukh Mandaviya lamented the inability of the central government to provide benefits to patients under the National Policy for Rare Diseases scheme.
In an official letter, the BJP MP said pending payments were the reason for the anomaly and requested Mandaviya to act on the matter immediately.
Gandhi claimed that not even a single patient has benefitted from the scheme and 10 children have died waiting for the treatment while threatening the lives of 432 patients, mostly children below the age of 6 years.
"So far, not a single patient has benefited from this scheme. 10 children have died waiting for treatment," Gandhi tweeted on his official Twitter handle.
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 Rs 50 lakh for treatment.
Gandhi, in the letter, claimed that most of the children are suffering from Lysosomal Storage Disorders (LSD) and need immediate care.
"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," reads the letter.
The BJP MP also added that the 10 Centers of Excellence (CoEs) established under the policy are yet to request financial support for the patients, despite repeated requests from the Ministry.
"According to organisations committed to the cause of rare disease patients, more than half of the Centers of Excellence have not sent a single treatment request to the Ministry of Health and Family Welfare," Gandhi claimed.
He requested Mandaviya to clear the payments and asked him to consider this matter seriously, as any delay in this regard shall result in the loss of lives of many more children.
( With inputs from ANI )
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