ISLAMABAD - Medical experts and activists have urged the government to bring out legislation to make pre-marital Thalassemia screening mandatory so that this dreaded disease could be prevented by timely identification of Thalassemia carriers.
They were speaking at a seminar held on Saturday at Shifa International Hospital Islamabad to observe Thalassemia Day falling on Sunday (today).
Shifa College of Medicine and Shifa Foundation had organized Thalassemia Prevention and Awareness seminar.
The speakers said five percent of the population of the country is Thalassemia carrier and majority of them belongs to Baluchistan.
They said bone marrow transplant is very expensive treatment which costs 15 to 20 lac rupees, though four centre have been established for bone marrow transplant but everybody cannot afford it.
They urged the parliament to make legislations to make mandatory pre-marital Thalassemia tests to avoid the disease.
They also suggested for spreading the information through media and making it a part of curriculum of colleges and universities to make aware the young generation.
Col Dr Nadir Ali, AFIP, briefing about the disease said Thalassemia prevalence is relatively higher in our country due to lack of awareness and no law for pre-marital Thalassemia screening.
He said Thalassemia is most common single gene inherited blood disorder, which can cause decreased and defective production of haemoglobin, which effects the transportation of oxygen to the body tissues.
It is the biggest burden on our blood transfusions centres and has become our national health concern.
Blood transfusions, bone marrow transplant and gene therapy are possible treatments for Thalassemia major patients.
Thalassemia major is a serious blood disorder and patient gets transfusion dependent very early in life he added.
Lt Col Qamar un Nisa Chaudhry from Armed Forces Bone Marrow Transplant Center Rawalpindi (AFBMTC), said the Thalassemia patients in Pakistan die at the age of 20 to 25 years while in other countries the span of age has been increased due to advanced treatment facilities.
Informing about the center she said the center was established in 2000 and so far 379 transplants have been conducted out which 115 were of Thalassemia patients.
She said the success rat e of the transplants has been 90 percent.
She said it is a safe and long-term treatment but it should be initiated in early age for better results.
Dr Faiza Fahim, Consultant Haematologist Excel Labs, informed Thalassemia is the most prevalent inherited blood disorder in Pakistan with more than 5,000 Thalassemia major births recorded every year and more than 1 crore population is carrier of this dreaded disease.
She said it is a preventable disease and can be prevented by timely identification of Thalassemia carriers, and in early pregnancy, once a couple is aware of their Thalassemia carrier status, it is absolutely essential that they go for a pre-natal diagnostic test called CVS to prevent the birth of a Thalassemia major child.
Dr Mati ur Rahman, Consultant Pulmonologist Shifa International Hospital, informed that there were existing 240 million healthy carriers worldwide and approximately there were 10 million estimated carriers in Pakistan.
Lt.
Gen (Retd) Faheem Ahmad Khan, President Thalassemia Welfare Society Rawalpindi, was the chief guest on the occasion.
Doctors from Islamabad and Rawalpindi, Thalassemia major patients and their families, Thalassemia carriers, medical and non-medical students, general public and members from different organisations also attended the seminar.

This news was published in The Nation newspaper. Read complete newspaper of 08-May-2011 here.