Marking its 50th anniversary, and alongside the first International Conference for Pediatric Hematology, the Egyptian National Health Insurance Organization (HIO) and the Egyptian Thalassemia Association (ETA) held on 16 Octobera press conference to announce that finally the HIO will be covering the expenses of treatment for thalassemia patients with no limits, after years of provision until only the age of ten.
“We understand that the expenses are way beyond the capability of many Egyptians, and that what insurance offers them is the only way they continue with the treatment,” Dr Ali Hegazy, head of HIO, told Ahram Online.
The treatment includes diagnosis, blood transfusions, and providing the drug which acts against iron-overload on various organs in the body, which is the main side effect of years of obligatory of blood transfusions.
Dr Naglaa Shaheen, a consultant in pediatric genetic hematology and HIO spokeswoman, said that over 7.65 million sufferers carry the gene, adding up to almost 9 percent of the population, and making Egypt one of the countries with the highest prevailing rates.
Shaheen added that 3,329 cases are treated in Egypt per year, with an annual cost of LE19 million - a number due to increase after the age limit is eliminated.
She added that the HIO provides bone marrow transplants, which cost up to LE75,000 per patient and makes available the latest treatments for genetic or acquired bleeding disease patients, such as hemophilia, the costs of which range from LE7,000 to LE15,000 per patient per month.
Dr Amal El-Beshlawy, professor of Haematology and Pediatrics and chairperson of ETA, elaborated on the problem of lack of awareness: “The real problem is that for every 1.5 million children born in Egypt annually, almost 1,000 carry the disease, due to lack of awareness."
El-Beshlawy said that many countries have overcome the problem by ensuring that couples get tested for the gene before marriage, thus decreasing the number of cases annually.
She stressed that media and various sectors of society must contribute to the aim of diminishing the number of new borns with the gene – which increased to 1,500 new cases annually – as a result of raising more awareness among new generations to undergo medical tests before marriage.
She also pointed out the importance of fetal testing if both parents are carriers of the disease.
The government affiliated Abul Rish Hospital performs tests during the first 12 weeks of pregnancy.
"I wish everybody had witnessed the relief and joy on the faces of parents who were told that the health insurance will continue to provide their sons with the medication that prevents iron from accumulating in their body.
“One of the most difficult challenges in fighting thalassemia is the fact that 70 percent of patients are infected with HCV. The Ministry of Health has gone to great lengths to provide patients with the latest HCV drugs, but without the necessary awareness on prevention, we will have wasted millions of pounds. After all, prevention is better than cure," she said.
Thalassemia is a genetic disorder that is passed from parents to their children. It is marked by a reduction in hemoglobin, thus the occurrence of severe anemia. Subsequently the patient may suffer from excess iron in his blood due to excessive blood transfusions.
A baby is born with the disease if both parents carry the gene, and as early as six months, blood transfusions should take place every three to four weeks to compensate for the shortage of hemoglobin.
The problem is that after a while blood cells break down and leave iron binding to vital organs like the heart and the liver, which eventually affect the function of these organs if left untreated, causing fatal problems to the person.
In Egypt, the iron accumulation problem was tackled by giving the children shots, which was an agonising burden, but fortunately an oral medication was introduced three years ago. And now their daily intake can help the child take his blood transfusions without suffering the side effects of iron accumulation.
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