LAHORE: It is suspected that almost 32 children have died due to lysosomal storage disorders/diseases (LSDs) in a year while 100 more are in grave danger due to the expensive treatment of the disease.
The major reason for this is said to be the refusal by the Punjab government for lifetime financial support to all the sick children because of high costs involved, sources have said.
He said these appalling figures surfaced when the Pediatric Gastroenterology Hepatology department of Children’s Hospital got feedback from the registered patients and prepared a thorough analysis about a week back.
The Institute of Child Health, Lahore, was the only public sector hospital in Pakistan having a facility for the treatment of children suffering from LSDs, he said.
The LSDs are rare but due to this deficiency, various materials are inappropriately stored in the cell and over the time the amount of material building up in each lysosome causes it to swell and occupy more space in the cell, leading to additional problems for normal cellular function.
The experts say the delay in the treatment leads to bleeding from nose and abnormal enlargement of some body organs ultimately resulting in miserable death of kids’.
Dr Huma Cheema, the professor of Pediatric Gastroenterology Hepatology at Children’s Hospital, confirmed the death of babies because of non-availability of funds.
She said currently about 150 children from all over the country were registered by the department for the treatment of LSDs, a rare genetic disease.
“Since the Punjab government has refused to provide funds for the treatment of kids and only 30 per cent of them are being funded for lifetime treatment by a few international donor agencies”, Prof Huma said.
“After refusal by the Punjab government, we approached donor agencies in the UK and the US which pledged support for 30 of the total registered kids, suggesting us to make arrangements for others from the local government,” she said.
Prof Huma said she had frequently visited the Chief Minister House and also tried to approach them through health authorities, but the government refused to provide funds saying it couldn’t bear expensive lifetime treatment of kids.
“Resultantly, the miserable deaths of kids started occurring due to non-availability of medicines,” she said.
