KARACHI, March 31: Only two per cent patients, a large majority of them children, with blood disorders benefit from the few bone marrow transplant services available in the country while thousands of others die before reaching a tertiary care hospital, making it imperative that these services be made easily available and affordable.
This was stated by Dr Saqib Hussain Ansari, head of the paediatrics bone marrow transplant unit at the National Institute of Blood Disease and Bone Marrow Transplantation (NIBD), while speaking to Dawn at a ‘thanks giving ceremony’ at the PAF museum on Thursday.
The programme was organised to provide an opportunity to patients, whose bone marrow transplants were done at the institute, to express their gratitude to the donors as well as philanthropists supporting the NIBD. Over 600 patients attended the event.
Explaining the reasons for having a bone marrow transplant, Dr Ansari said the procedure was being carried out for patients suffering from blood disorders, including those suffering from thalassaemia (an inherited blood disease that cause the body to produce fewer red blood cells and haemoglobin), Aplastic anaemia (a condition where the bone marrow doesn’t produce sufficient red blood cells, white blood cells and platelets) and blood cancer.
“The blood disorder could be congenital. Thalassaemia is an inherited blood disorder while Aplastic anaemia and blood cancer are strongly associated with the irrational use of pesticides, nuclear radiation and the use of weapons of mass destruction.
“The role of genes in blood disorders hasn’t been completely explored. Blood disorders are found to be more common in the South Asian communities than the western countries. The ratio is 100:1. It is believed that contamination of water, unhygienic conditions and consumption of harmful substances such as gutka could also be contributing factors.”
The facilities for a bone marrow transplant were currently available in Karachi (Aga Khan Hospital and NIBD) and Rawalpindi (Armed Forces Institute for Bone Marrow Transplantation) while efforts were being made to start the procedure at Pakistan Institute of Medical Sciences in Islamabad.
Regarding the number of children suffering from blood disorders, he said their exact number was not known as the data was generally collected in urban areas. The number of thalassaemic children was between 70,000 and 100,000 in the country. It was estimated that around 5,000 children were born with thalassaemia every year.
“Every thalassemic child should be offered bone marrow transplant, but a large number of children are deprived of the treatment. This happens not only because the treatment is very expensive and available at few facilities, but also because parents are unaware and physicians don’t refer the child at the proper time. There is an age-limit for different blood disorders to be rectified through the procedure,” he said, adding that the transplant cost around Rs1.5m ($25,000) in Pakistan and $300,000 in the United States.
The NIBD, supported by philanthropists, received 150 and 200 patients of Aplastic anaemia and blood cancer and 400 to 500 thalassemic children every year.
Highlighting the benefits of bone marrow transplant, Dr Ansari said the procedure had two major advantages over other forms of transplants: the donor didn’t lose any vital part of his body for life and the recipient had to take the immunosuppressive drug only for nine months.
“In the case of other transplants, the donor loses an organ and has to take the immunosuppressive medication for life. The drug has numerous side-effects and could damage different organs of the body.
“In case of a bone marrow transplant, however, the soft, fatty tissues taken out of the donor’s body are formed again within 24 hours. Second, the patient is cured for life and needs to take the potentially dangerous drug for only nine months,” he said.
Regarding the success rate of a procedure, he said it was far greater where tissues were taken from a sibling (biological relation). “Considering the fact that there is no bone marrow donor bank in the country, we have to rely on a patient’s siblings for the transplant. Since we have large families, the patient’s tissues are matched with one of his or her siblings,” he said, adding that the 25 per cent patients whose match was not available had no option but to either go abroad or die in misery.
Explaining the precautions involved after the procedure, he said the patient was kept in strict, complete isolation for four to six weeks as he was very vulnerable to all sorts of infections because of zero immunity level which occurred when the defective bone marrow was drained out and replaced with healthy tissues.
Retired general Moinuddin Haider, former governor of Sindh and the chairman of the Pakistan Thalassaemia Foundation, and Dr Tahir Shamsi, project director at the NIBD, also spoke.
Survivors of bone marrow transplants were also invited onstage to express their feelings. They included Masood Hashmi, Sumaira Sharif (treated for blood cancer) and children (Maheen, Insharah and Anza) who received treatment for thalassaemia.