Seeking aid for their children

Amidst the blaring loudspeakers from all corners at Janpath, four-year-old Shreya tightly clasps her mother’s hand. Unable to understand what’s happening around, she looks at her with longing. What she wants is her mother Shivani to get her an ice cream. But for Shivani, bringing Shreya to such a chaos is not a regular affair. She is among those parents, whose kids suffer from rare disease and to give them a healthy life, all they need is lakhs of rupees.

“Shreya is suffering from Gaucher’s disease. It is genetic disease in which body is not able to produce enzymes that dissolve lipids. So lipids accumulate in different parts of the body like lungs, heart and spleen,” says Shivani. “Every month, Shreya is infused with four vials as a part of Enzyme Replacement Therapy (ERT) which costs around Rs 4 lakh,” she says.

 Shreya, today, looks like a normal kid but it wasn’t the situation some two years ago. “Initially, her growth was delayed. Her platelet count was low and her spleen was swollen,” laments Shivani, a resident of Laxmi Nagar, who is also the member of Lysosomal Storage Disorder Support Society. “If we miss the therapy, she will be in the same condition. It is life-threatening,” she says.

But six-year-old Vihan Mitra is not like Shreya. He is mentally challenged and is wheelchair-bound. He suffers from Hunter’s Syndrome, another form of Lysosomal Sto­rage Disorder.  Her mother is spending lakhs to keep him alive.

Several other kids from all around the country along with their parents were present at Janpath asking government to ensure proper funding mechanism and adequate medical infrastructure to ensure timely diagnosis and treatment access for their kids suffering from these rare diseases.

Most LSDs are managed through disease-specific supportive care measures. However, seven of them are now treatable with ERT. These include Gaucher Type-I, Fabry’s disease, Pompe disease, MPS-I (Hurler disease), MPS-II (Hunter disease), MPS-IVA and MPS-VI (Maroteaux-Lamy syndrome).

Dr I C Verma, director, Center of Medical Genetics, Sir Ganga Ram Hospital, says, “Health budget planners at both the central and state level need to be sensitised to the severe burden that rare diseases place on the family and society. The families of rare disease patients have to go through a great deal of anguish and despair as they cannot afford to give life-saving treatment for their children due to their high cost. The prognosis of lysosomal storage disorders is uniformly bad without enzyme replacement therapy.”

Manjit Singh, president, LSDSS says, “Due to sustained campaign on LSD awareness, it is high time that the Prime Minister should take a call to make costly drugs available free of cost to patients. Most importantly, the government should make diagnosis compulsory in all government hospitals.”

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