Patients with Lysosomal Storage Disorders (LSD), an inherited disorder, staged a silent protest here on Tuesday demanding that the State government set up a special centre at the Indira Gandhi Institute of Child Health, as promised.
Prasanna Kumar B Shirol, founder member of the Organisation of Rare Disorders, said their long-standing demand for financial aid was yet to be addressed.
“Though it is mentioned in the budget that a special unit at the Indira Gandhi Institute of Child Health would be set up for patients suffering from haemophilia, thalassaemia, sickle-cell anaemia and primary immunodeficiency, nothing had been done in this regard,” Shirol added.
Shirol’s daughter Nidhi suffers from Pompe disease and he spends over Rs 50,000 a month for her treatment and care.
Nidhi is now being supplied medicine by Genzyme, an India-based drug company that supplies free medicines to such patients. “For now, the company is bearing it all. We do not know what will happen when they stop providing us medicine. Most of us would find it hard to afford it,” he explained.
Nidhi is not alone, as 35 LSD patients in the State continue to hope that they would be provided with medicines.
Shashikala, whose daughter was diagnosed with LSD, said, “My daughter was diagnosed with LSD at St John’s Medical College and Hospital. I was then told to go to Indira Gandhi Hospital for further treatment. For now, the company has been supplying us the medication. We do not know for how long they will continue to do that,” she added.
Shirol explained that there were 45 such disorders, of which only six – Gaucher’s disease, MPS I, MPS II, Pompe disease, Fabry disease and MPS VI, were treatable.
A petition on behalf of patients suffering from LSD would to be submitted to the State government, Shirol added.
