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A new ray of hope for Pakistan's thalassemic children

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From the very first day of my career as a journalist, I have heard story after story about the horrific state of healthcare in Pakistan. The tales are ever-repeating; inhumane treatment of patients, filthy hospital premises, expired medicines, negligence of doctors... the list is long and depressing.

But one rainy day, I was forced to revise my impression on at least one front. There is now a ray of hope in Islamabad’s F-9 park.

A carpeted track surrounded by trees took me towards the new state-of-the-art medical facility that is the Pakistan Thalassemia Centre (PTC).

Celebrating Eid at the Pakistan Thalassemia Centre

Thalassemia is an inherited blood disorder that is characterised by abnormal formation of haemoglobin, and diseases are consequently caused due to weakening and destruction of red blood cells. It is the most common inherited blood disorder in the world. Children with thalassemia major require ongoing treatment and blood transfusions throughout their lives; the disorder often leads to an early death.

In Pakistan, approximately 100,000 patients are suffering from this disorder and every year, 5,000 babies are born with this deadly disease. These patients need regular blood transfusions, and that's what the PTC has started to do since August 2015.

Also read: Over 50,000 beta thalassaemia kids in Pakistan

Under the banner of Pakistan Baitul Maal, the Pakistan Thalassemia Centre has so far provided financial assistance to 1,500 patients as treatment continues.

While establishing and financing this centre, Managing Director Pakistan Baitul Maal, Abid Waheed Sheikh, articulated a clear vision:

  • To extend quality medical care free of cost.

  • To increase life expectancy and improve the patients' quality of life.

  • To provide hope and alleviate the miseries of children born into poverty.

And that’s what Mr Abid is doing religiously.

The centre was established with a sum of Rs 50 million, and walking around the facility, I could see the money was well-spent.

The main lobby for blood transfusion (themed in blue and white colours) had around 20 beds, all of which were occupied by children suffering from this disease. But all of them had a smile on their faces, and were quite clearly being treated with care by the doctors attending to them. I felt that same sense of joy when I walked into the room where the children were being given transfusions.

Also read: 10 thalassemic children get HIV from transfusions

The centre is headed by Dr Javed Iqbal. According to him, they have registered 200 patients as of yet and approximately 20 patients are being treated on a daily basis. Dr Iqbal was of the view that “the thalassemia law is on paper, but not being fully implemented, and that is the main hurdle in diagnosing and coping with the disease.”

“Beliefs and behaviours are also a hurdle as people usually avoid blood screening before marriage,” he added. The public is still indifferent to the phrase, 'prevention is better than cure'.

The transfusion facility is just one of the sections, though. There is also a laboratory and a blood bank. The centrifuge machine and the blood storage facility form the backbone of this centre. It was heartwarming to learn that there are unnamed heroes who have made much of this possible, by donating machinery that is currently keeping the facility running.

My only disappointment was when I saw the meagre number of blood bags at the bank. MD Abid Waheed shared the same feeling. He said people are very reluctant when it comes to donating blood regularly; they feel it would impact their health, even though scientifically, it is a healthy practice to donate blood at least every six months.

While Pakistan may not be on the list of thalassemia-free countries, hopefully, with more institutes like this one, we may be.

Additional reporting and production by Usman Ahmed


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