Daily Times

In the hot weather of Turbat (Balochistan), Shoaib Baloch (a thalassemia patient aged 15 and carries blood group O positive) runs from street to street in the city to search for blood. He has to have blood  after every 15 days and today marks the 17th day he is without blood. He loses his consciousness after two hours of constant walking from one shop to the other and one house to the next. His father shifts him to civil hospital and continues meandering in the walled streets of the city. At the end of the day, when he turns to a shop in the main bazaar where he gets a person with the same blood group as his child, he is told that his son would not survive and that he should not pity himself with his son. He tirelessly and hopelessly returns to civil hospital, waiting for a miracle to happen for his son.

The National Census 2017 pronounces District Kech of Balochistan’s Makran division with a thick population of 909,116. The district has a total number of 600 thalassemia patients aged 5 to 29, confirms Medical Superintendent (MS) of civil hospital Turbat. Few other patients have not registered themselves with District Headquarters Turbat and are treating their patients in Karachi and Quetta where they travel monthly for check-up and blood transfusion. Because prior to 2020, they could not get blood from the hospital while it was hard for them to find donors for themselves. Unfortunately, the 2nd biggest city of Balochistan by population, as shown in the Census 2017, the city lacks a blood bank till today.

“It is hard to beg for blood when you know people run when they see you,” says the very little Shoaib. Facing all these challenges, he seems to mature up in his normal routine. He has left no stone unturned with his consistent wandering for blood, but could not succeed every time. “Sometimes people pitied me and donated blood, while other times they threw harsh words that you will not survive,” Shoaib says, looking down at the earth with tears rolling from his reddened eyes.

Feeling the pains of these children, a young team led by Irshad Arif, a private school teacher himself, formed a care center for thalassemia kids named Kech Thalassemia Care Center (KTCC) in  2020’s February where thalassemia warriors (as the founder of KTCC calls them) are donated with bloods free of cost and timely, and even transfused in the center. The center is run with the donations the team receives from people across the country. The care center is also linked with other thalassemia centers and foundations including Kashif Iqbal Thalassemia Center, Kiran Foundations and so on.

“I do not understand the policy of hearsay our people have adopted with the patients of thalassemia or their parents that they will not survive,” says Irshad Arif. He stresses that it may only be a general statement for the one who speaks it, but it means hopelessness and despair for the ones who are going through it. “Should parents throw their children away because we are saying that they won’t survive?” Arif questions those who repeat such statements, adding that it was untrue that they do not survive. “Only if they receive proper treatment and get blood timely, will they survive.”

Dr Misbah Baloch, a child specialist based in Turbat, seconds Arif saying that thalassemia kids were living normal lives in other countries and even other cities in Pakistan where they are getting proper care and treatment. “The issue is that these kids need medicines which are costly and a person with average lifestyle cannot afford them,” she says, adding that per month the medicines cost some 1.5 million rupees.

Out of 212 thalassemia warriors registered with KTCC, Arif says all the kids belong to average and below-the-poverty-line families who cannot afford such a large amount for treatment. And the amount was not to be given for once but every month. “They hardly ever get two times the food, spending this much on medicines – that too monthly – is out of their capacity,” Arif says. Many times KTCC pays for the transportation of kids who live outside the city in the villages considering their financial hurdles.

“I come from Mand (a town some 120 kilometers away from Turbat touching borders with neighboring Iran) after every 15 days for transfusing blood to two of my children,” says 10 year-old thalassemia patient Sama’s mother, Zarina*. It takes her three hours to reach the city from her town. She hires a local car which takes 1000 rupees for a round trip. The other expenses in the city are a different concern for her as she has no relatives in the city. “Sitting the whole day in the city with two kids who are patients is always a hard task,” she says and pauses for a while and looks at her children playing around her in the hospital premise. “But then I feel these children are going to an even harder phase of life.”

While asking the provincial minister for health, Syed Ehsan Shah about the center and their performance, the minister says although the work was of great importance, it could not be run permanently on donations. He added that the government was working on facilitating the civil hospital so that the issue is recovered soon. “We appreciate the team for their tireless efforts and ensure they cooperate with the government too,” says the minister.

On the other hand, Arif shows dissatisfaction over the response of the government and other assembly members towards them saying that they were not ‘very interested’ towards the center. He further says that it was not only the transfusion of blood that could have been possible in the civil hospital but also pushing the parents, who are financially unstable, to come on time for blood for which the center puts their best to render them the required monetary support. “We can further do our best if the government shows more attention towards funding us,” adds Arif.

Keeping in view their financial statuses, several times they are asked to pay for getting blood. “When I went to one of my friends to ask him to donate my son with blood as it was an emergency,” says Shay Mehrab, father of a thalassemia major Faris Baloch, “he told me to give him ten bottles of beer in front of my child.” What disheartened Mehrab the most was that he told him in front of his child that he (Faris) would not remain alive for more years and that there was “no use to waste his blood freely”. Both the father and son were dumbstruck and left asking someone else to donate them a blood. “But now thanks to Kech Thalassemia Care Center, we do not face such issues,” he says, thanking Irshad Arif and his team for ‘feeling their pain’.