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.

“Mansoor suffered because of a lack of facilities, staff and funding. The government should intervene, or else the centre will close down. The Planning Division has also written a letter saying that measures should be taken to retain employees.”

Ms Nishtar, the former health minister who now runs Heartfile, said her organisation did its best to provide the families of thalassemia patients medicine and support.

She explained: “Bone marrow transplantation is curative treatment for many cancers, as well as haematological and connective tissue disorders. However, access to this costly treatment is a major constraint – especially for the poor and those without health coverage.

“The public private partnership at the Pims children’s hospital provided a good model to share the cost of bone marrow transplantation. The public sector hospital provided the infrastructure, an INGO from a donor country paid for the salaries of the staff whereas our NGO paid for the cost of medicines and provided support to patients for travel to the hospital and their stay since most of them came from far flung areas. Through this partnership, the poor could get their children treated for free. It is therefore important to sustain such partnerships in public sector hospitals to facilitate access of the poor to such costly services.”

“I believe the issue needs to be reviewed and analysed to determine what can be contributed by all the partners who were working together in the past. I have a small NGO which has been doing as much as possible, but it would not be possible for me to pay the employees,” she said.

“A private hospital will open a bone marrow transplant centre, but it will charge patients and the poor would not be able to get treatment,” Ms Nishtar added.

Another Pims doctor said it was unfortunate that most government departments in Islamabad were facing problems.

“Employees of the Pims cardiology centre have not been paid for 16 months. In the city, daily wage teachers from model schools have been protesting because they aren’t being paid. Even sanitation workers in Islamabad are not being paid, which is why they have been on strike,” he said.

“Meanwhile, the government has claimed that it will construct 46 hospitals in the country. At Pims, the filter clinic for the emergency department has been complete for months but it hasn’t been made functional for unknown reasons. It seems as if all public sector institutions will collapse soon,” he went on.

According to the Pims vice chancellor, Dr Javed Akram, foreign funding was involved in the project, and all the staff were employed by the project. Now that the project has ended, funding has also been stopped. Dr Akram said: “Now we have been trying to get the PC IV of the project approved so employees can be regularised.”

“Every patient has to stay at the bone marrow transplant centre for six months, so we have also amde a guest house for patients’ relatives, who used to spend time on the roads,” he said. “Now the government has to arrange funding, and I am trying to address the matter.”

“This is the only public sector bone marrow transplant centre for thalassemia, and we specialise in bone marrow transplants for children. I don’t want to lose the staff, so I will arrange funding and all the staff will be called back. We are facing a similar problem at the cardiology centre and we will address it.”

Dr Akram added that the centre’s success rate is “very good” and people come from as far away as Afghanistan seeking transplants for their children.

Published in Dawn, October 23rd, 2016