The cost of a bone graft in Morocco, as a definitive treatment for thalassemia, ranges between 70,000 and 100,000 dirhams. And an estimated 10,000 people are affected by this hereditary blood disease. Its prevention does not cost more than 500 dirhams…
If the standard therapeutic treatment of thalassemia is very heavy, ie blood transfusions with daily medication every month throughout life, prevention is now accessible to all budgets by a simple blood test no more than 500 dirhams: electrophoresis of hemoglobin, inform, exclaim, Professor Mohammed Khattab, President of the Federation of Moroccan Societies of Thalassemia and Sickle Cell Disease, on the occasion of World Thalassemia Day, celebrated by the international community on 8 May.
The body of a patient with thalassemia, especially his bone marrow, is unable to make normal red blood cells, hence the need for monthly blood transfusions, such as a vehicle that constantly needs fuel to drive. , says Professor Khattab, former head of the pediatric oncology hematology department at CHU Ibn Sina in Rabat.
First of all, it is important to specify, Professor Khattab warns, that thalassemia is not a contagious disease. It is a hereditary disease, transmitted by parents, in good health, but carrier of a genetic defect.
They can have a sick child once in every 4 pregnancy. Unfortunately, due to the lack of screening, it is not until the birth of a child with thalassemia that the parents realize they were healthy carriers.
In its main form, this disease manifests itself in the baby by a progressive pallor, an increase in the volume of the abdomen (due to the increase in the volume of the spleen in relation to the storage of abnormally destroyed red blood cells) and as a deformation of the bones of the cheeks and forehead.
In the less severe forms, thalassemia appears with the same symptoms, after the age of 2 years and always before the age of 10 years.
For this specialist in pediatric blood diseases, diagnosing this pathology is no problem from a medical or biological point of view.
The two key exams are available all over Morocco and are inexpensive. These are the NFS (Complete Blood Count) which shows significant anemia, and the hemoglobin electrophoresis on high performance liquid chromatography, which confirms the diagnosis (HPLC).
Morocco is said to have about 10,000 people suffering from thalassemia. And the “Department of Health chose to host the 1”er national thalassemia registry within the epidemiology department. But unfortunately, this project did not take shape, because the Ministry of Health has not given any real follow-up to this registry, despite its final design in 2014, by a scientific committee very competent in the matter,” notes Professor Mohammed bitterly. khattab, who was a member of the scientific committee of this registry at the time.
In addition, this specialist in infantile hematology specifies as the patient produces abnormal red blood cells which are then destroyed by the spleen, he becomes increasingly anemic and at risk of dying in his early childhood.
Fortunately, there is a solution, says Professor Khattab: blood transfusion. It is necessary to transfuse the patient every month and throughout life.
However, these transfusions have an important side effect: iron overload, because the iron provided by repeated transfusions is not eliminated naturally.
This overload eventually leads to death, if not prevented in time and combated by means of chelating drugs (iron destruction) that must be taken every day, including for life.
Obviously, biological assessments, imaging and exploration of the various organs must be programmed. The hope of every thalassemia patient is to be cured once and for all from this often fatal disease by the age of 20.
For this, his bone marrow, which is unable to produce the beta chains of hemoglobin, must be replaced by normal bone marrow. This transplant is preferably that of a sibling of the patient who is HLA compliant, a form of cellular compatibility to prevent body rejection of the bone marrow transplant.
This technique, called allograft hematopoietic stem cells, has proven its effectiveness in Europe for over 40 years. In Morocco, transplantation in thalassemia is still timid. And the cost varies between 700,000 and 1,000,000 DH.
It should be noted that the cost of caring for a patient with thalassemia, in terms of monthly blood transfusions and daily drug intake, is 50,000 DH per year for life, before age 5; 100,000 DH for ages between 5 and 10 years and more than 200,000 DH per year, above the age of 20, if the patient survives beyond this age.
This is obviously very costly for families and for civil society organisations. However, it is a disease that can be eradicated and thus save money, says Professor Khattab.
This prevention has been successful in several countries in the Mediterranean region. Even Palestine, in permanent conflict, was able to eradicate this disease.
Thalassemia children are no longer born in these countries, explains Professor Mohammed Khattab.
How then to eradicate it in Morocco? Since thalassemia is transmitted by healthy parents who carry the potentially transmissible genetic abnormality to their children, it is enough to perform CBC and hemoglobin electrophoresis on one or both parents (cost: from 300 to 500 dirhams).
If both parents are healthy carriers, it suffices to warn them that with each pregnancy they are one in four times more likely to have a child with thalassemia in its major form.
If there is a marriage and the birth of a sick child, the dramatic scenario is clear. It is therefore necessary to plan a marriage between a man and a woman who does not carry the gene. This is a policy implemented in several countries around the world, which eradicated thalassemia.
It is clear that a clear and complete sensitization of the population is an essential precondition for screening for this hereditary hemoglobin disease.
It is incomprehensible that Morocco has not yet started raising awareness and screening for a rare disease such as thalassemia. Because the socio-economic benefits at all levels would be priceless, Professor Khattab says, in a desire to warn public opinion.
†dr. Anwar Cherkaoui is a doctor. Winner of the higher cycle of Iscae, he was the head of medical communications at the CHU Ibn Sina in Rabat for thirty years.