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Data Registry for Thalassemia Patients; Health Experts

KARACHI– Seasoned Hematologists urged the Federal and Provincial Governments, to launch data registry for thalassemia suffering children, which will not only help in keeping track of the number of patients but, will also aid in assisting the experts to accelerate their work on prevention strategies.

Speaking at the joint Press Conference at Omair Sana Foundation (OSF),  President OSF Dr. Kashif Hussain Ansari, General Secretary  OSF Dr. Saqib Ansari and Dr. Obaid Hashmi  demanded the Government of Sindh to establish state-of-the-art Thalassemia Management and Prevention Centre in Karachi, to cater children suffering from this blood disorder. The Omair Sana Foundation launched a week long thalassemia awareness drive, in light of World Thalassemia Day, to be marked on May 08.

International Cricketer and Fast Blower, Rumman Raees  also attended the event and applauded the services of OSF. He also advised the citizens to donate blood for thalassemia sufferers.

Dr. Saqib Ansari added that,  although there is no data registry but, approximately 5000 children are born with thalassemia, annually in Pakistan. Currently, at least 100,000 children are suffering from this disease in our country. Thalassemia children need 1.8 million blood bags annually in our country. So many children lose their lives due to unavailability of blood.

 He further informed that, 12 to 14 children in Karachi are being diagnosed with  thalassemia at his clinic, every day, which shows that the rationale of this blood disorder is high in Karachi, Sindh. He explained that marriage between two thalassemia minor patients increase the risk of Thalassemia major by 65%. He further said that the test of thalassemia minor can be conducted at any basic health unit.

He demanded of the Government of Sindh, to mention Thalassemia Status in the marriage certificate and in the Computerized National Identity Card. All regional blood centers should be made functional, to ensure provision of safe blood to thalassemia patients.

Dr. Obaid Hashmi added that, medicines for thalassemia patients are not readily available in local markets due to monopoly of pharmaceutical companies.  Government should ensure availability of drugs to save lives.

 

May 21, 2018

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