Islamabad - Boisterous and playful Subhan sat on a bed in a gloomy and lacklustre hospital ward. With his mischievous grin, he was fidgety, needles penetrating the tender skin on his tiny hand, transfusing blood. Subhan, 5, has had thalassaemia since he was three-month-old. His mother Tanzeem Bibi looked exhausted, trying to restrain her son from fiddling with the drip attached to him. “It takes me one hour to get here,” said Tanzeem, referring to Pakistan Institute of Medical Sciences (PIMS) where she has been coming for five consecutive days. “And it takes me three hours to reach Islamabad,” she added with a fatigued smile.

Residing in a village situated in the outskirts of Murree, she brings her son once a month for treatment, bearing a 4-hour journey and an uncomfortable switching of two vans. A black veil covered her body but the baby bump was conspicuous. Tanzeem’s firstborn (baby girl) died at the age of three months for reasons unknown to the couple to date. “The staff here told me to get a test done to see if my next baby has thalassaemia,” she said. That test, chorionic villus sampling (CVS), is a form of prenatal diagnosis to determine genetic disorders in the fetus. At PIMS it is done for free though the cost is around Rs 6,000. If results are unclear, abortions can be carried out under certain circumstances. After 14-16 weeks, abortion becomes illegal by law and even religion, according to which the hospital has put up two notices with a fatwa endorsing the right to ‘abort the unborn by the 12th week maximum.’

“I don’t watch news and I don’t know how to read. I just look after my son,” said Tanzeem, blissfully unaware of the report of 10 children who were infected with HIV allegedly after receiving tainted blood transfusions. The hospital attendant’s ignorance over the same issue, however, was hardly comforting.

Reports claim that the 10 children were from Islamabad, Rawalpindi and Lahore, but blood banks responsible for this sordid affair have not yet been identified. Approximately 50,000 children in the country suffer from thalassaemia, a disease that prevents the production of haemoglobin. In Pakistan, the blood screening process is often unregulated. Many people who want blood trust the donor, increasing their chances of an HIV infection.

The controversy erupted during the 9th National Thalassaemia Conference and Workshop held in Lahore in November where Dr Jovaria Mannan, Chairperson Medical Advisory Board TFP, informed the participants that there is a very high incidence of Hepatitis B and C in transfusion dependent Thalassaemics in the country. She also said that recently a small number of Thalassaemics have also been found to be HIV positive. Although the information was not specific to any particular thalassaemia centre or city, it has highlighted the deteriorating blood screening process throughout the country.

The report, nonetheless, caused a scare, pointing to the abysmal health system in the country and that a high number of Thalassaemia patients do risk getting infected due to faulty blood transfusion, be it hepatitis or aids.

Dr Javed Akram, vice chancellor of Pakistan Institute of Medical Sciences, said that Dr Javeria Mannan conducting a study in Lahore claimed to have found that 10 children with thalassaemia had been infected with HIV virus. She has been unreachable as she is currently in the US.

“We have offered free treatment for the 10 infected children for both thalassaemia and HIV but no one has approached us as yet,” claimed Akram. “Once you have infection you cannot get a bone marrow transplant, which is the only cure for thalassaemia.”

Dr Akram further highlighted that Hepatitis B and C are common for whoever needs blood transfusion in Pakistan. People go to different blood banks in desperate situations. Many times, blood is not screened for testing. “We have one patient only who is HIV positive. Ninety-seven bone marrow transplants have been done and we have a 95 per cent success rate. Patients come from as far as Afghanistan to us.”

A preliminary inquiry of ministry of national health services, regulations and coordination has declared media reports of detection of HIV/AIDS infection among 10 thalassaemia patients as baseless. The ministry maintained, “Thalassaemia Federation of Pakistan has failed to provide the list of the 14 patients and their laboratory reports.” Even though the federation chooses to disassociate itself from this controversy or denies knowledge about these HIV positive thalassaemia patients, it has brought focus to the problem.

A blood transfusion takes 3 to 4 hours and containing a naughty child like Subhan was wearying for the mother. “I don’t know much about thalassaemia but my husband does. I trust the staff at the hospital.”  Awareness on prenatal and neonatal care is low in Pakistan.

Tanzeem got her CVS test done only after losing a baby girl and having a son with thalassaemia. The state of blood screening in Pakistan is abysmal. Blood donations are often unregulated, patients go to multiple donors in desperation and donated blood is often not carefully tested. Getting the wrong blood type by accident is the main risk in a blood transfusion, which can cause a severe life threatening reaction.

Subhan sat on the bed twiddling and playing with figurines of Johnny Bravo and Mickey Mouse, donated by visitors earlier in the day. His mother sat besides him, looking at him affectionately and still clueless about the report about possible HIV infections.

Mina Sohail is an Islamabad-based freelance writer.