ISLAMABAD: Despite a reduction in tax, the price of formula milk for babies with metabolic disorders has increased by 30pc, even though it was excluded from the list of luxury items.

Saadullah Siyal, father of 13-month-old Azbah Shireen, told Dawn that during the last financial year he ran from pillar to post to exclude formula milk from the list of luxury items.

“Thanks to President of Pakistan Dr Arif Alvi and then Special Assistant to Prime Minister (SAPM) on Health Dr Zafar Mirza, who played a role and then Prime Minister Imran Khan decided to exclude formula milk from the list of luxury items and 72.5pc tax was withdrawn from the milk, which is a life line for babies with metabolic disorders,” Mr Siyal told Dawn.

When asked about metabolic disorders, he said, in some cases babies fail to digest lactose, glucose, protein, fats and a number of other components of milk due to which even the mother’s milk becomes unsafe to drink for them. Babies need to be given milk which lacks the component, which they cannot digest.

“My three sons were born with metabolic disorders and died. Now I have a 13-month-old baby girl and have been trying my best to ensure that she would survive. As mother’s milk cannot be given to her so I buy powdered milk, which lacks fats, as my baby is suffering with long chain metabolic disorder and special milk is given to her,” he said.

Mr Siyal, who is a health practitioner himself, said that he became familiar with the disorder because three of his children died because of it.

“We formed a group in which other people, having the same problem with their babies, were included and we started collective efforts to exclude formula milk from the list of luxury items. We were successful but suddenly the price of 400 grams of powder milk has been increased from Rs4,200 to Rs6,000, despite the fact that tax has been withdrawn,” he said.

In some cases, he said, one tin costs Rs10,000 and some people have more than one baby with a disorder. “I appeal to Prime Minister Imran Khan, President of Pakistan Dr Arif Alvi and others to take notice of the issue,” he added.

Pediatrician Dr Haider Sherazi, who served at Pakistan Institute of Medical Sciences (Pims), said that it was a very rare disorder because of which babies cannot digest one of the components of milk.

“In majority of cases, babies die without confirmation of the disorder as people and even health practitioners at clinics, take it as infection … Though such cases are found in one in 10,000 live births globally, I believe that in Pakistan the ratio of metabolic disorder is high due to cousin marriages,” he said.

As the majority of parents cannot afford formula milk, Pims used to refer such cases to the Pakistan Baitul Mal (PBM) for financial assistance but PBM used to perceive it as milk rather than medicine.

“We take it as a medicine because babies cannot survive without this milk. We appreciate that now PBM has started understanding the issue,” he said.

An official from the Drug Regulatory Authority of Pakistan (Drap) said it was unacceptable to increase the price of formula milk because it was as important as life-saving drugs. We will try to play our role to reduce the prices, he added.

Sheraz Ahmed, who runs a medical store, said that the prices of almost all ordinary and common baby formula milk were increased by 30pc and people were suffering because of this.

“A number of parents have reduced the quantity of milk for their children. Those who used to buy eight tins have been buying five or six tins as the price of 400 grams of milk has been increased from Rs685 to Rs1,050,” he said, adding prices of other nutritional products consumed by adults have also been increased.

SAPM on Health Dr Faisal Sultan could not be reached as he was busy attending an important meeting. Ministry of National Health Services spokesperson Sajid Shah told Dawn that appropriate action will be taken over the issue as health was a top priority of the government.

Published in Dawn, August 20th, 2020