- Prevalence of thalassemia carriers in Egypt nearly 9%; among the highest rates worldwide
- Drugs to remove excess iron improve patients’ lives and survival rates
Cairo, 8 May, 2013 –A press conference was hosted on International Thalssemia Day (ITD) revealing the launch of ‘My Blood Can Save a Life’, a campaign aiming to encourage blood donation in support of patients with Thalassemia. Implemented by Resala Charity Association, the campaign is endorsed by many organizations including The Cairo University, the Health Insurance Authority, Ain Shams University, the Egyptian Thalassemia Association (ETA), and Zaqaziq University.
“It is our pleasure to be among so many friends and supporters of patients with thalassemia,” said Dr Ahmed Abdel Naeem, official spokesperson for Resala. “Stemming from our belief in the strength of community and government partnerships, we launched ‘My Blood Can Save a Life’ and ‘Know your blood Type’ campaigns. Both initiatives aim to raise awareness of thalassemia and urge blood donation by hosting donation drives in social and sports clubs for the benefit of children with thalassemia.”
“Thalassemia is a major health concern in Egypt; prevalence of disease carriers is nearly 9%, one of the highest rates worldwide,” said Dr Amal Al Beshlawy, Professor of Hematology and Pediatrics at Aboul Rish Cairo University Hospital and Chairman of the ETA. “Today’s conference is a culmination of great efforts by many organizations working towards a thalassemia-free society.”
“Thalassemia patients need regular blood transfusions to ensure sufficient levels of hemoglobin, the oxygen carrying component of the red blood cell,” said Dr Mohsen El Alfy, Professor of Pediatrics and Hematology at Ain Shams University. “Eventually, the blood cells break down and leave iron in the patient’s body. This iron will bind to major organs such as the liver or heart. Left untreated, the iron will overload these organs until they will not be able to function, creating serious health problems for the patient.”
“Fortunately treatments exist. Deferasirox, an oral medication, helps reduce chronic iron overload. The first oral medication for this purpose, it was approved by the US FDA in November 2005. Taken regularly, it helps patients resume a normal lifestyle, get married and become active community members, ultimately alleviating substantial burden on patients and their families.” explained Dr Alfy. “Deferasirox, tablets are taken once a day instead of subcutaneous injections. It doesn't cause a decrease in white blood cell count or joint pain that can hinder children's movement,” he added.
“The National Health Insurance has taken major steps toward changing the treatment landscape for patients with thalassemia. It provides patients with optimal and approved treatments as well as safe blood. As a result, Egypt is now at the forefront of countries exerting efforts to meet the full needs of thalassemia patients,” said Dr Naglaa Shahin, Consultant of Pediatrics and Genetic Blood Disorders and official spokesperson of the National Health Insurance.
“Early detection of carriers is the key to eradicating thalassemia. Pre-marital tests are crucial to prevent marriage between carriers, which is the only way that thalassemia is passed on,” said Dr Mohamed Badr, Professor of Pediatrics and Hematology at Zaqaziq University. “We need a national plan bringing together civic, individual and organizational efforts to halt the spread of the disease and raise awareness.”
He encouraged the public to support thalassemia patients via regular blood donation as well as monetary contributions. He also urged the government to continue providing treatments, especially in the Delta region where prevalence is notably higher.
Alaa Abdalla, a 20-year old Syrian medical student and thalassemia patient shared her experience, “My parents are relatives and both were silent thalassemia carriers. In Syria I received regular treatment to reduce iron overload and blood transfusions. Yet, now I can’t because of the financial cost amounting to EGP 1600 every month, and the lack of blood bags.”
She urged the Egyptian government to provide patients with drugs to reduce iron overload and to ensure the safety of blood for transfusions. She advised patients to remain hopeful in overcoming thalassemia and asked parents to “go for pre-marital tests so that your children don’t suffer for a lifetime as a result.”