GUEST WRITER

The concern is increasingly becoming heart-wrenching that Thalassemia may become a very serious problem in the next 50 years, one that will burden the world's blood bank supplies and the health system in general. The most frustrating aspect of Thalassaemia is a constant fear of losing the child sooner or later knowing that he/she is not going to survive beyond 20-30 years, also the fear of having more such children. Moreover, most of the cases remain undiagnosed; therefore Thalassemia carriers die much earlier here compared to the ones in developed countries.

Thalassemia is a growing global public health problem. An estimated 60-80 million people in the world carry the β-Thalassemia trait. This is a rough estimate; the actual number of those with Thalassemia major is unknown due to the prevalence of Thalassemia in less-developed countries, one example of which is Pakistan, due to the lack of genetic counseling and screening.

In Pakistan, Thallassemia runs in families because cousin marriages are common; and it continues as an alarming fact that carriers often remain unidentified because of symptom-less nature of Thallassaemia minor. About 8 to 10 million people have Thallassaemia minor. The prevalence of this blood disorder is more than 100,000 and the new births of Thallessemics are almost five thousand per year.

Out of these, a limited number of thallesemics get regular blood transfusion and chelation. The average annual cost of iron chelation therapy, blood transfusions and other supportive therapy is USD 2358 per patient. Whereas, average income in Pakistan is USD 1513 per anum per family. Here PBM feels humbly thankful as majority of these less privileged patients get support from Pakistan Bait-ul-Mal’s initiative for the sufferers through Pakistan Thallassemia Center.

Thallassaemia is a public health problem with profound implications for individuals, families and health services in Pakistan; poverty and illiteracy are responsible for converting a controllable disease into ever-present course. PBM believes that poverty and poor health worldwide are inextricably linked. The cause of poor health is rooted in political, social and economic injustices. Since Barrister Abid Waheed Sheikh joined Pakistan Bait-ul-Mal as a Managing Director, he is taking utmost measures to enable the vulnerable individuals getting rid of this cruel circle and dealing with all the key factors involving in ill-health.

With the ambition of equal access to quality healthcare for every poor patient with Thallassemia and other hemoglobin disorders across the country, a state-of-the-art “Pakistan Thallasemia Treatment Center” has been effective in capital city of Pakistan since May, 2015. This centre has been accommodating poor patients from all over the country. And it’s a matter of pride and satisfaction for us that 28% of the patients are receiving free optimal care by PBM.

On the platform of Pakistan Thallassemia Centre, Barrister Abid also raised the voice for having a National Policy for blood screening and developing an effective national Thallesemia policy recognising its importance. The present government has principally agreed on it and very soon will be working on having a national registry for Thallesimics and pre-marital blood screening bill through upcoming census.

Currently the government is successfully running a Thallasemia prevention program in the largest and the most populated province of Punjab. However, it is a fact that given the magnitude and complexity of poverty and health related issues any government alone is unlikely to solve the problems.

Recently, Thallassemia International Federation with the collaboration of the Jordanian Thallassemia & Hemophilia Society and Ministry of Health of Jordan invited the PBM managing director in the conference on Thallassemia and Haemmoglobinopathies.

The recent visit of President Mamnoon Hussain to the Thalassemia centre is evident of present government’s resolution to take every possible step for prevention and treatment of Thallassemia disease. No one can deny the importance of awareness campaigns, national policies, national registry and plans for the prevention and eradication of this dangerous disease.

Cyprus and Iran are amongst those countries that overcame this disease after having the screening policy. Therefore, Bait-ul-Mal joined hands with local NGOs to be all open to end this fatal disease.

So, let’s move together for the sake of happiness of ailing fellow-humans, as humanity teaches us that commitment of defending people’s wellbeing has no boundaries.