LAHORE: At least 32 children suffering from lysosomal storage disorders (LSDs) or diseases have died in a year while lives of over a 100 more are at grave risk due to expensive treatment.

The major reason for this sorry state of affair is said to be the refusal by the Punjab government for lifetime funding to all the sick children because of high expenses involved, an official privy to the information told Dawn.

He said these shocking figures about the death of kids surfaced when the Pediatric Gastroenterology Hepatology department of Children’s Hospital got feedback from the registered patients and prepared a detailed 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.

Lives of around 100 at risk as govt ‘refuses’ to fund expensive treatment

The medical experts say the LSDs or diseases are rare as there is something wrong with special chemicals called enzymes that are required to break certain substances in the body.

Because of 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 abnormally enlargement of some body organs which later result in the ‘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.

Consequently, the lives of nearly 100 children of the registered kids for LSDs treatment were now at grave risk, she said.

She said that 32 children suffering from the same disease had died from Jan 2016 to Jan 2017.

Many children had come to the hospital from Khyber Pakhtunkhwa, Balochistan and even from Azad and Jammu Kashmir, she said.

She said the patients had been registered for the treatment of the rare disease after initial diagnosis.

“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 lamented.

Prof Huma said the babies required weight-based treatment. A year-old LSDs baby with 10kg weight required a cost up to Rs600,000 per month for treatment, she said.

According to the available record, she said, the kids contract this disease within two to three months after their birth.

“Unfortunately, we have no diagnostic facility in Pakistan and we have to send samples abroad,” Prof Huma reveals while sharing miseries of kids and their parents.

She said the samples of kids suspected of infected with LSDs were being sent to India which also required huge expenses.

To meet these expenses, she said, the department managed to get financial support from the US-based charitable organizations.

Published in Dawn, February 23rd, 2017