6,000 suffer from Thalassemia in Pakistan each year

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“Thalassemia is a major genetic and hereditary disorder of public health in Pakistan. Around 6,000 new patients are added every year to the existing population of the country. There are 10 million carriers of this disease who spread this disease to their next generation. Economic cost of treatment of thalassemia is enormous.”
These views were stated by Dr Tahir S Shamsi, Adjunct Faculty of Dr Panjwani Center for Molecular Medicine and Drug Research (PCMD) – Karachi University (KU), while delivering a lecture on “Management of Thalassemia without Blood Transfusion ? A Myth or a Reality?” held at Prof. Salimuzzaman Siddiqui Auditorium of International Center for Chemical and Biological Sciences, KU, on Thursday.
The lecture was jointly organised by Dr. Panjwani Center for Molecular Medicine and Drug Research and Virtual Education Project Pakistan (VEPP) as a part of series of popular lectures for public awareness on common diseases of Pakistan. Dr. Tahir S. Shamsi is Professor of Hematology, Consultant Hematologist and Transplant Physician, and also serves as Director of Stem Cell Program and Medical Director of National Institute of Blood Disease and Bone Marrow Transplantation. He said that our study showed that 40 per cent patients will not need blood transfusion and maintain a hemoglobin level between 7-9 gm/dl long-term.
“This enormous disease burden deserves special attention to develop and implement thalassemia prevention program in order to curtail the birth of new patients. Side by side, allowance should be made for those who suffer from this disease by providing comprehensive care, safe blood, iron chelating drugs and bone marrow transplant to deserving patients. Management of thalassemia has a major bearing on different aspects of healthcare delivery, economics and social well being of our nation. It’s gratifying to see a major development in the treatment of thalassemia in which 40 per cent patients do not require blood transfusion while a significant numbers have more than 50 per cent reduction in blood transfusion requirement was noted. This seems to be a major breakthrough and a ray of hope for thousands of parents who suffer from the misery, financial hardship, complications of the disease and treatment related iron overload in their affected children,” he said.
Most important discovery of these researchers is their ability to identify the 5 genetic mutations in which HU has been found to be preferentially beneficial, he said, adding comprehensive treatment of 60,000 registered patients cost 7.8 billion rupees per year. He said that lot of this cost is covered by NGOs, government and affected families. When 40-50 per cent of these patients can be managed without blood, at least 3.5 billion rupees could be saved. “It will also reduce the shortage of blood in the country and blood banks will be able to provide this blood in cases of trauma and to women who otherwise die because of massive blood loss during childbirth.”