Under the auspices of the Egyptian National Health Insurance Organization (NHIO) and the Egyptian Association for Thalassemia (ETA), a press conference was held marking International Thalassemia Day (ITD). With the prevalence of thalassemia carriers in Egypt, estimated at 9% and considered among the highest worldwide, experts shared progress on prevention, treatment and patient support initiatives.
“Today’s conference is a culmination of great efforts by many organizations working towards a thalassemia-free society,” said Dr Amal El Beshlawy, Professor of Hematology and Pediatrics at Aboul Rish Cairo University Hospital and Chairman of the ETA. “Thalassemia is one of the most serious and prevalent genetic disorders affecting red blood cell production and causing anemia. Forms of thalassemia range from milder types to severe cases that start in infancy and require regular blood transfusions for patient survival. Complications can vary by type of thalassemia, and patients may also suffer from iron overload as a serious disease consequence.”
Dr Aly Hegazy, Head of the National Health Insurance Organization shared good news for thalassemia patients, “We are currently considering providing even more patients with iron overload treatment ‘deferasirox’ by raising beneficiaries’ age limit from 10 to 18 years of age.” He also said that the organization is in charge of 3,329 cases of thalassemia and that the annual cost of treatment amounts to nearly EGP 19 million. Services provided to patients cover diagnosis and treatment including safe blood transfusions, ensuring blood availability at blood banks, providing iron overload treatments for children up to the age of 10, stem cell transplant, and monthly check-ups.
“Thalassemia is a major health concern in Egypt; nearly 1,000 children are born with the disease every year” said Dr Hoda Hassab, Professor of Hematology and Oncology, Alexandria University. “Thalassemia patients require regular blood transfusions to ensure sufficient levels of hemoglobin, however as a result patients are at risk of iron overload. Left untreated, this excess iron affects major body organs such as the heart and pancreas, creating serious and potentially life-threatening complications. This is why treatments to reduce the level of iron in the blood are an essential part of the treatment regimen.”
“Deferasirox, an oral medication, helps reduce chronic iron overload,” said Dr Lamees Ragab, Professor of Pediatrics and Hematology, Cairo University. “The first oral medication for this purpose, tablets are taken twice daily instead of subcutaneous injections and with lesser side effects, thereby helping patients resume a normal lifestyle.”
She added that inter-family marriages substantially raise the risk of disease incidence and emphasized that pre-marital screening is key for prevention. She highlighted global success stories such as Greece and Cyprus where systemized pre-marital screening helped eradicate the disease; both countries have been thalassemia-free for the last 20 years.
Ms Manal Shoukry, Egyptian Association for Thalassemia Board Member and Co-Founder of Patients against Thalassemia, underlined that Thalassemia has evolved from a fatal paediatric disease to a chronic, well-managed one for many patients. “With the right treatment, our life quality and expectancy is tremendously enhanced. I am thankful for the wonderful support and the ability to get the right treatments and want to tell other patients that thalassemia should not control your life or become an obstacle, take action and strictly follow your physicians’ advice.”
She also called upon the government to activate the ‘Prevention Program’ including nationwide school screening, mandatory pre-marital screening and ensuring equal access to treatment.
Dr Amal El Beshlawy highlighted the ETA’s continuous efforts to support patients and listed the organization’s milestones including funding stem cell transplant surgeries for 18 children, providing free treatment, including iron chelation treatments, for patients without access, organizing blood donation campaigns, participating in global studies, establishing a world-class treatment facility at Cairo University and lobbying for the enactment of laws ensuring patients’ fair chances at employment and education.
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