Thalassemia patients struggle to access transfusions

Given the paucity of dedicated treatment centres, low-income families have few treatment options available for saving

KARACHI:

Nearly all parents caring for a sick child have to persistently bear the exhaustion that accompanies frequent doctor's appointments and the fatiguing task of forcing a bitter suspension down their unruly little one's throat. Yet, the task of pacifying their fussy child would be nothing for the unfortunate parents of thalassemia-affected children in Sindh, whose real challenge lies in locating and accessing a blood transfusion centre.

For Nabila and her husband, parents of 12-year-old Tahir suffering from thalassemia major, waiting for hours at the Umair Sana Foundation for their son's transfusion every 20 days has become routine. "On the day of the blood transfusion, my husband has to take a leave from work so that we can reach the facility at 9am. Once a CBC test is done, it takes three to four hours to process the blood transfusion. Moreover, thalassemia children accumulate excess iron in their bodies after the blood transfusion, which needs to be removed through certain drugs. These medicines cost nearly Rs40,000 to Rs50,000 per month, which is unaffordable for the common family. Considering the absence of public facilities, welfare institutions in the city are the only hope for children with thalassemia," said Nabila.

Similarly, the father of eight-year-old Ramsha, another patient of thalassemia, was spotted with his daughter at the Muhammadi Blood Bank. "At the government level, children with thalassemia have no facilities available for blood transfusions. Registering a thalassemia patient at a government hospital in itself is a very difficult task. Had it not been the welfare institutions in the city, our children's survival would have become very unlikely," regretted Ramsha's father.

According to Dr Saqib Ansari, a haematologist, each child with thalassemia needs two bottles of blood per month while more than 25,000 children across Sindh, including Karachi, are suffering from this disease. "Unfortunately, the Sindh Blood Transfusion Authority does not have accurate data of children affected by thalassemia. Since there is no thalassemia centre in Sindh, children affected by thalassemia from Baluchistan and its related areas come to Karachi for treatment.

Thus, 22,000 to 25,000 bottles of blood are required every month in Sindh alone. Most of the thalassemia centres in Sindh are running under self-help. A thalassemia-affected child has an annual expense of Rs240,000 on medicines while the cost of testing is Rs200,000. Recently, the Sindh government started supporting some thalassemia centres but it is insufficient. Furthermore, there is no bone marrow transplant facility at the government level in Pakistan including Sindh," revealed Dr Ansari.

On the other hand, Syed Mehdi Rizvi, Chief Executive Officer of the Muhammadi Blood Bank claimed that three thalassemia centres had been set up in different cities where thalassemia-affected children were provided free of cost treatment facilities as per international standards. "About 159 children are registered in the Thalassemia Center of Karachi while 450 children seek treatment at the centre in Jacobabad and 75 are treated at the centre in Multan. The government of Sindh provides only 50 per cent support to the Muhammadi Blood Bank for blood transfusions. Since patients and their accompanying persons come to Karachi for treatment after traveling a long distance from Sindh, we will soon establish thalassemia centres in Dadu, Jamshoro, Tharparkar, and Mithi with the support of the Sindh government to provide blood transfusion and treatment facilities to thalassemia affected children in their respective districts," asserted Rizvi.

"More than 11,000 thalassemia major children are registered in 28 thalassemia centres established at public and private levels across Sindh, including Karachi. Sindh Blood Transfusion Authority monitors these thalassemia centres to ensure safe blood transfusion," added the Head of Sindh Blood Transfusion Authority, Dr Dur-e-Naz.