Parents of spinal muscular atrophy patients meet Vij
Parents of patients suffering from spinal muscular atrophy (SMA), a rare genetic disorder, met Haryana health minister Anil Vij at his Ambala residence on Friday demanding affordable treatment for their children
Parents of patients suffering from spinal muscular atrophy (SMA), a rare genetic disorder, met Haryana health minister Anil Vij at his Ambala residence on Friday demanding affordable treatment for their children.
The visitors from across state are demanding early treatment due to the deteriorating health of their children.
According to Sushila, a resident of Ambala’s Naraingarh and mother of Deepansh Rana who is suffering from Type-2 SMA, 21 patients in Haryana are battling the disease.
Sushila, who also represents Gurugram-based Cure SMA Foundation of India as its Haryana coordinator, said, “Through our representation, we’ve asked for permission to arrange a meeting with a private pharmaceutical firm that can provide the essential drug.”
Lalit Soni, of Jhajjar who is parent of a girl suffering from the disorder, said the treatment for a year costs nearly ₹70 lakh and they cannot afford it.
At Vij’s weekend ‘Janata Darbar’ in September last year, the parents were assured of free treatment on lines of hepatitis B and haemophilia patients. HT, in its report on March 28, 2021, had explained about the lethal disease found in one of 10,000 babies, in which muscles of the patient weaken with age.
Vij, in a statement, said his government is working to provide rebates for the treatment.
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