Uncertain future for Pims bone marrow transplant centre
A stroke of luck allowed Abdul Sattar to get a free bone marrow transplant for his two and a half year old son Mansoor, who suffers from thalassemia, but he is frustrated that the transplant was unsuccessful.
“A few months ago I visited the Pims bone marrow transplant centre, and doctors told me a bone marrow transplant for my child would cost Rs800,000 and would take six months to complete. I told them I couldn’t afford the treatment, but a doctor told me the Pakistan Baitul Mal would provide Rs600,000, and she would pay the remainder out of her pocket,” Mr Sattar, a daily wage labourer from DI Khan, tells Dawn.
“The transplant was carried out, but I have now been told it was unsuccessful, so it will be done again in a year. I have five children, but Mansoor is the only one suffering from thalassemia. This has made me very frustrated,” he said.
Thalassemia prevents the body from producing red blood cells, and patients require blood transfusion as treatment.
The only cure for the disease is a bone marrow transplant, which is not only expensive but also requires a donor. However, sometimes, transplanted bone marrow does not start producing cells as it should, and the occurrence is called graft rejection.
Islamabad resident Faisal Rafique’s son Saifullah is four and a half years old and recently underwent a successful bone marrow transplant.
“Although my child is better, I have been taking him to the hospital regularly for checkups. Hopefully my son will recover fully and become a beneficial part of society,” he said.
Mr Rafique said the Pakistan Baitul Mal contributed Rs300,000, and he will now receive another Rs300,000 for medication. He said he paid the rest of the cost himself.
A doctor from the Pakistan Institute of Medical Sciences (Pims) said that over 120 children have received bone marrow transplants at Pims, but severe crises regarding funding and staff have led to concerns that the hospital may not be able to offer the facility in the future.
“There are three centres which have been providing the transplant facility – the Armed Forces Bone Marrow Transplant Centre in Rawalpindi, the National Institute of Blood Diseases and the Agha Khan University Hospital in Karachi. But Pims is the only public sector hospital that has been providing the transplant for free,” he explained.
The doctor said the bone marrow transplant centre was built under the Pakistan Italy Swap Debt Agreement, in which Italy converted a loan to Pakistan into a grant and agreed to build the transplant centre. “Italy has controlled thalassemia entirely, so it also wanted to make Pakistan thalassemia free.
Work on the centre started in 2008, and Italy not only trained Pakistani doctors and staff, but it also funded transplants. The former health minister Sania Nishtar’s NGO Heartfile also came forward and contributed to treatment,” he said.
“In 2015, the project was ended and Italy left. We struggled, and finally managed to get around Rs5 million from the government to continue to provide the service to children. In 2016, the same problem arose because we had no funding for treatment or even to pay our staff,” the doctor said.
“Because of the worsening situation at the transplant centre, a private hospital began offering trained staff a handsome amount to work there, so our employees began leaving to join that hospital.”
“We had a staff of 30 employees, out of which there were five doctors, 15 nurses, paramedics and grade four employees, but they started leaving after the salaries were stopped. Over the last six months, 11 trained employees left and only two doctors and two nurses remain – the rest are grade four employees,” he said.
He said even the remaining doctors have offers from the private hospital, and could earn up to six times what they do at the transplant centre, but they had not left in the hopes that, if regularised, they could get government jobs and better grades. He said the private hospital charges an initial Rs2.5 for the same treatment.