New Delhi: Hopes seem to be fading away for people suffering from Lysosomal Storage Diseases with the government turning a blind eye to their need despite repeated pleas.
About 592 patients suffering from the diseases, under the aegis of the Lysosomal Storage Disorders Society (LSDSS), have made several representations to successive governments for a corpus to take care of their treatment but in vain.
"We had made representations to several health ministers from Dinesh Trivedi to Harsh Vardhan and thought that they supported our demands, but nothing concrete has come out so far. Now we will be soon making a representation to Health Minister J P Nadda," said Manjit Singh, president of LSDSS.
Singh, father of two dwarf brothers in their twenties who have been struggling with Hunter's syndrome since the age of five, had started LSDSS in 2010 to unite other parents whose children are suffering from similar disorders. The society has so far registered 592 kids with lysosomal disorders.
"We have been asking the government to create a corpus of Rs 300 crore for the past four years to support the medication of children suffering from these disorders including Gaucher's disease. The treatment called Enzyme Replacement Therapy is very expensive and the treatment cost varies on the basis of the patient's weight.
"As in for a 10-kg child, the treatment cost ranges between Rs 40 lakh and Rs 60 lakh per year... There is no health care policy of the Centre or states for these diseases," Singh said.
Lysosomal Storage Diseases are a group of around 45 rare genetic disorders caused by deficiency of a specific enzyme in special compartments (lysosomes) of the cells. At present, seven of 45 LSDs are treatable whose prevalence rate ranges from 1 in 30,000 to 1 in 400,000 births.