The world celebrates Thalassemia Day every May as part of efforts to raise awareness of the condition.
This year, to mark the day, the Egyptian National Health Insurance Organisation (NHIO) and the Egyptian Thalassemia Association (ETA) held a press conference to announce that the NHIO was considering covering the expenses of treatment for patients until they reach the age of 18, rather than the previous age limit of 10.
“We understand the expenses are way beyond the capability of many Egyptians, and insurance offers them the only way to continue their treatment,” Dr Ali Hegazy, head of NHIO, told Ahram Online.
He added that there was still a dire need for funding through donations, to helping the 3,329 patients the insurance covers, at an annual cost of LE19 million -- a number due to increase after the age limit is raised.
The treatment includes diagnosis, blood transfusions, and providing the drug deferasirox, which acts against iron-overload on various organs in the body -- the main side effect of years of blood transfusion.
When Ms Manal Shoukry started to speak, a feeling of awe prevailed among the listeners. The narrow-framed lady with a broad smile and a determined look told her story that speaks of great courage and resilience.
Diagnosed with thalassemia as a child, she endured daily shots for 25 years, and turned her agony into a determination to help others with the same condition, establishing Patients Against Thalassemia.
“Now that oral medication is available, it is much less painful, and the decision to raise the age of beneficiaries to 18 is great,” she said.
Shoukry urged both the government to speed up screening programmes, and called for people to donate money to the cause and possibly donate bone marrow.
Dr Naglaa Shahin said the Health Insurance provides for 200 bone marrow transplant procedures per year, each costing LE75,000.
Dr Amal El-Beshlawy, professor of haematology and paediatrics, and chairman of the ETA, shed more light on Thalassemia.
“It is a genetic disorder that is passed from parents to children. It significantly reduces haemoglobin, thus leading to severe anaemia. Subsequently the patient may suffer from excess iron in his blood due to excessive blood transfusions,” she said.
“A baby is born with the disease if both parents carry the gene, and as from as early as six months old blood transfusions should take place every three to four weeks to compensate for the shortage of haemoglobin.
“The problem is that after a while the 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 for years by giving children shots, which was an agonising burden. But fortunately new oral medication came on the scene, and now their daily intake can help the child take his blood transfusions without suffering the side effects of iron accumulation.
The number of sufferers in Egypt is staggering.
“One thousand kids in Egypt are born with the disease every year,” says Dr Hoda Hassab, professor of haematology at Alexandria University.
“Other models of reform should be looked at, such as launching a national plan to curb the increase [in cases],” said Dr Lamis Ragab, professor of paediatrics at Cairo University.
Many countries have overcome the problem by ensuring that couples get tested for the gene before marriage, thus decreasing the number of cases annually.
An example is Cyprus, where although 14 percent are carriers of the gene, only one child is born each year with the disease, and the same applies to Greece.
In Egypt over 7.65 million sufferers carry the gene, adding up to almost 9 percent of the population, making it one of the countries with the highest prevailing rates.
Finally, Dr Amal El-Beshlawy emphasised the work of the ETA, which was established in 1990. It participates in worldwide research, helps patients find access to treatment, raises funds for bone marrow transplants, lobbies for the enforcement of laws that specify a percentages of job opportunities for thalassemia patients, and established a state of the art treatment facility at Cairo University, along with various awareness campaigns.