ISLAMABAD: Parents of children with thalassaemia have urged the chief justice to take suo motu notice of the imminent closing down of the Bone Marrow Transplant Centre (BMTC) at the Pakistan Institute of Medical Sciences (Pims).

In the application submitted in the Supreme Court and available with Dawn, parents of children with thalassaemia major said a bone marrow transplant is the only cure available to their children and that this facility was not even available in Pakistan till 2010.

The transplant centre was established with the help of the Italian government, which also trained staff for the facility.

CJP urged to take notice of closing of the centre

After 2015, the Ministry of Capital Administration and Development Division funded the centre, which has conducted 150 successful transplants.

A transplant at a private hospital costs around Rs3 million and the same procedure costs Rs1m at the Pims transplant centre of which Rs600,000 is donated by the Pakistan Baitul Mal.

The application says doctors, nurses and staff at the centre have not been paid their salaries since July 2017 and they have now been told that their contracts will not be extended in order to avoid administrative issues.

Some 500 children are on the waiting list for transplants.

The court was informed that the Pims liver transplant centre was closed and the Cardiac Centre may also be closed as its staff is also not being paid.

The application goes on to say that the planned closure of the Cardiac Centre, BMTC and the liver transplant unit at Pims is apparently for the benefit of private hospitals that are charging more than the average citizen can afford.

Samiullah, a student from Tank, Khyber Pakhtunkhwa who has signed the application, told Dawn his 12-year-old brother was treated at the BMTC some four months ago and is still being kept in the hospital in order to avoid infection.

“We have so far only spent Rs200,000 as some of the tests are conducted at private laboratories. My father is a retired teacher and we could not afford a bone marrow transplant at a private hospital, which demand Rs3m in advance. We request the CJP to take notice of the issue,” he said.

Jamal Khan, the father of 10-year-old Abdul Razaq who was operated on on March 20, said doctors told him his son will have to stay in the hospital for some time.

“I am afraid of what will happen to my son if the BMTC is closed. I belong to Loralai, Balochistan and I drive a cab for a living. I cannot afford to take my son to a private hospital for treatment.

“The staff at Pims are very caring and they have not been paid for many months now. I want the SC to take notice of the issue as many parents cannot provide their children the treatment they need,” he said.

A doctor at the hospital said the centre was constructed under the Pakistan Italy Swap Debt Agreement.

He said Pakistan had to repay a loan to Italy which converted it into a grant and said it would spend the amount owed on the BMTC and provide facilities for the people of Pakistan.

“Italy has controlled thalassaemia and it wanted to make Pakistan free of the disease as well. Work started on the BMTC in 2008 and Italy trained doctors and staff and also spent money on transplants,” he said.

The doctor added that the project ended in 2015 and Italy also pulled out.

“We struggled hard and finally managed to get around Rs5m from the government in order to continue services for children.

“The same problem arose in 2016 because we had no funds and staff salaries were also stopped,” he said.

A private hospital started offering good salaries to the trained Pims staff, he said, and the remaining staff is also finding it very difficult to continue working.

“The doctors can join the private sector but it’s the poor patients and their families who will suffer because they cannot afford private treatment,” he added.

Pims administrator Dr Raja Amjad said he was trying his best to address the issue.

Published in Dawn, March 28th, 2018