Husna, a 14-year-old girl from Shabqadar, undergoes an indescribable ordeal of severe pain every week when she is brought from her village for blood transfusion. She was diagnosed with thalassaemia major when she was eight-month-old. Since then, she has been experiencing piercing needles and an endless round of pain. Javed, the father of teenage Husna, said that his daughter like other patients received better treatment at the centre but despite it, his entire family had been suffering the pangs of her life-long agony.

Thalassaemia is a fast spreading disease in Khyber Pakhtunkhwa and Fata. Around 2,000 patients die of the disease every year, according to medical experts.

The pathetic story of Husna was not different from hundreds of other ailing children who were lying on the beds for receiving treatment at Hamza Foundation in Peshawar.

Experts estimate 2,000 people die of the disease every year

The facility is located in University Town on Khushal Khan Khattak road in a rented house. Owing to enormous rush of patients, the welfare centre faces shortage of funds and insufficient space as screening machines worth millions of rupees are seen stacked in the congested rooms and even kitchen.

A large number of patients from tribal agencies and far-flung areas of Khyber Pakhtunkhwa visit the centre every day. Out of its 30 employees, three qualified doctors have quit their jobs while the serving staff has not received salary for the last five months due to lack of funds.

“The centre pays Rs100,000 as rent and is also in dire need of more state-of-the art screening equipment,” said Dr Sofia Khatoon, who works at Hamza Foundation.

She said that provincial government had closed down six months ago a thalassaemia testing centre in Hayatabad that was providing free blood test service.

“The free testing centre used to carry out free blood test for thalassaemia major and it was a boon for poor patients,” she added.

Another doctor at the centre told this scribe that the trend could cast a negative impact on their free blood services. “We collect donations from different sources, of late, it has become hard for us to get through,” he added.

Saeeda, an eight-year-old thalassaemia patient from remote Mastak village in Tirah valley of Khyber Agency was waiting to get fresh blood. With her pale cheeks and frail physique, she was not talkative like other children.

“I want to play with other children in streets but I feel sick and weak. Also I cannot go to school,” she struggled to talk and shared her feelings.

“Will a day come in my life when I am able to run, jump and play like other children,” she questioned with her eyes welled up.

Zarwali Jan, father of three-year-old Wajeeha, a resident of Spulga village in North Waziristan Agency said that healthcare conditions in his area were the worst and people in general could not afford treatment of fatal diseases.

He said that Hamza Foundation had been providing them with better facilities including free food on every visit.

“I thought my daughter will die when she was diagnosed with thalassaemia major as I could not afford her proper treatment. There is a strong tradition of inter-family marriages in our village which I think should be stopped to avoid such miseries,” Mr Jan suggested.

Prof Noor Sana Uddin Khattak, a senior teacher at social work department, University of Peshawar, while sharing his views on the issue pointed out that provincial government should run a mass awareness campaign regarding inter-family marriages.

Inter cousin marriages were quite common in the rural areas because of illiteracy and backwardness, he said.

Prof Khattak said that educating people about the hazards of inter-family marriages was urgent and it should be carried out at all levels since talking about the imposition of a ban on inter-cousin marriages was not sufficient to control prevailing genetic disorders among the masses.

The number of patients of thalassaemia and other blood-related diseases has touched an alarming point of over 40,000 in Khyber Pakhtunkhwa and tribal areas.

According to Ijaz Ali, the founder and chairman of Hamza Foundation, the number of patients mostly children suffering from thalassaemia and various blood-related diseases had reached over the figure of 40,000 during the last few years.

According to medical reports, district Peshawar is the hub of thalassaemia and other blood-related patients. Thalassaemia patients could survive from 25 to 30 years and seven per cent of the patients were thalassaemia major carriers, another report said.

Mr Ali said it was a rough estimation, the actual number might exceed it, and there was 10 to 15 per cent rise every month in the deadly disease. He said that yearly expenditure on the free blood services had exceeded Rs25 million. The provincial government granted only 25 per cent through an annual grant-in-aid to the centre, he added.

Mr Ali said that around 1,107 patients had been registered at the centre during the last three months.

Dr Tariq Khan, medical director at Hamza Foundation, said that out of 182, a few couples used fatwa issued in 1992 by Allama Mufti Mohammad Taqi Usmani and carried out abortion in 42 cases as they were diagnosed with thalassaemia major at prenatal stage.

The second part of the fatwa reads: “If medical research finds out any kind of serious disease or defect in the fetus before it becomes active and if an honest doctor advises so, then abortion of fetus is permissible for mother.”

Mr Khan said that a lesson on thalassaemia and other blood-related diseases should be included in 9th and 10th grades biology textbook for the sake of awareness.

Prenatal tests, launch of mass awareness campaign and inclusion of a sign for thalassaemia in national identity card were immediate measures for prevention of the deadly disease, he added.

Dr Meher Taj Roghani, adviser on social welfare to chief minister, said that she was going to move a bill draft in the provincial assembly regarding inter-family marriages.

“The government has good intentions to provide a suitable building to Hamza Foundation free blood services and also extend further financial support,” she said, adding that alongside curative steps, preventive measures should be equally focused.

Published in Dawn, March 6th, 2016