The lysosomal Storage Support Society (lSDSS) on Thursday put forward its demands to the Delhi Government to provide free and substantial treatment to children suffering from Mucopolysaccharidoses (MPS) or Hunter’s Syndrome at AIIMS. MPS is a group of genetic conditions wherein the absence or deficiency of an enzyme causes problems such as developmental delays and retardation. The hospital gathered almost 50 patients suffering from this disease, their families and doctors to join hands and raise awareness about such disorders.
This was highlighted in a programme organised by the Paediatric Department, AIIMS in association with lysosomal Storage Disorders Support Society (lSDSS) on the occasion of the fifth annual International MPS Awareness Day. Several doctors from other hospitals were present as well.
According to Dr IC Verma, director of Center of Medical Sciences at Sir Ganga Ram Hospital, MPS when divided in its various types is extremely rare but when combined is prevalent in almost one of every 5000 children in the country. “This means that this disease is not uncommon and needs to be diagnosed in time to be treated well. Earlier doctors had the excuse that there was no treatment which is why they never diagnosed the problem. But now there is treatment for MPS I, MPS II and MPS III already and the treatment for MPS IV is already in trial mode,” said Verma. However, he added that since the treatment which is Enzyme Replacement Therapy (ERT), is expensive, the Government needs to intervene. “The treatment is too expensive for many to afford. Thus, the Government should make the treatment free and provide the children suffering from it a chance to live life normally,” he elaborated.
Dr AP Dubey, professor and head of Department of Paediatrics, Maulana Azad Medical College said, “The Government understands that free treatment is needed for the disease, thus, they should now make it official for the rest if the children as well and not limit it to those who fight for it.”