Grandstand. Thalassemia in Morocco, between a curative treatment at 100,000 dirhams and a preventive cost at 500 dirhams

If the standard therapeutic management of thalassemia is very heavy, that is, blood transfusions every month throughout life with daily medication, prevention, for its part, is within the reach of all pockets through a simple analysis of blood not exceeding 500 dirhams: hemoglobin electrophoresis, informs, exclaims, Professor Mohammed Khattab, president of the Federation of Moroccan Thalassemia and Sickle Cell Associations, on the occasion of World Thalassemia Day, celebrated by the international community every 8th may.

The body of a patient suffering from thalassemia, particularly their bone marrow, cannot make normal red blood cells, hence the need for monthly blood transfusions, like a vehicle that constantly needs fuel to run. says Professor Khattab, former head of the hematology department of pediatric oncology at CHU Ibn Sina in Rabat.

First of all, it is important to clarify, warns Professor Khattab, that thalassemia is not a contagious disease. It is a hereditary disease, transmitted by parents, in good health, but carriers of a genetic abnormality.

They can have a sick child, once in 4, with each pregnancy. Unfortunately, due to a lack of screening tests, it is only when a child with thalassemia is born that parents realize they were healthy carriers.

In its major form, this disease is manifested in the baby by a progressive paleness, an increase in the volume of the abdomen (due to the increase in the volume of the spleen in relation to the storage of abnormal red blood cells destroyed) as well as a deformation of the bones. of the cheeks and forehead.

In less severe forms, thalassemia presents with the same symptoms, starting at 2 years of age and always before 10 years of age.

For this specialist in childhood blood diseases, at a medical and biological level, there is no difficulty in diagnosing this pathology.

The two key exams are available throughout Morocco and are not expensive. These are the NFS (Complete Blood Count) that shows significant anemia, and the Hemoglobin Electrophoresis in High Performance Liquid Chromatography, which confirms the diagnosis (HPLC).

Morocco would have about 10,000 people suffering from thalassemia. And the “Ministry of Health chose to host the 1^Ahem national thalassemia registry within its epidemiology department. But, unfortunately, this project did not take shape, because the Ministry of Health did not give any real follow-up to this registry, despite its final design in 2014, by a very competent scientific commission on the matter”, points out the professor bitterly. Mohammed. khattab, who at that time was a member of the scientific committee of this registry.

In addition, this specialist in pediatric hematology specifies, since the patient produces abnormal red blood cells that are later destroyed by the spleen, he becomes increasingly anemic and is at risk of dying in 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, since the iron provided by repeated transfusions is not eliminated by natural means.

This overload ends up causing death, if it is not prevented in time and combated with chelating drugs (iron destroyers) to be taken every day, also for life.

It is evident that biological assessments, imaging and exploration of the different organs must be scheduled. The hope of any thalassemia patient is to be cured once and for all of this often deadly disease by the age of 20.

This requires replacing your bone marrow, unable to make the beta chains of hemoglobin, with normal bone marrow. This transplant should preferably be from a brother or sister of the patient who is compatible with HLA, a form of cell matching to avoid rejection by the body of the bone marrow transplant.

This technique, called hematopoietic stem cell allograft, has proven itself in Europe for more than 40 years. In Morocco, transplantation in thalassemias is still timid. And its 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 medication intake, for life, amounts to 50,000 DH per year, before 5 years; DH100,000 for ages 5 to 10 and more than DH200,000 per year, from the age of 20, if the patient survives beyond this age.

Obviously, this is very expensive for families and for social welfare organizations. However, it is a disease that can be eradicated and therefore save money, says Professor Khattab.

This prevention has been successful in several Mediterranean countries. Even Palestine, in permanent conflict, was able to eradicate this disease.
There are no more births of children with thalassemia 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 sufficient to perform a complete blood count and hemoglobin electrophoresis in one or both parents (cost: 300 to 500 dirhams).

If both parents are healthy carriers, it is enough to warn them, that is, they will have one in four times the risk of having a child with thalassemia in its major form, with each pregnancy in case of marriage.

If there is a marriage and the birth of a sick child, the dramatic scenario is clear. Therefore, it is necessary to plan a marriage between a man and a woman who do not carry the gene. This is a policy that has been implemented in several countries around the world, which have eradicated thalassemia.

It is obvious that a clear and complete sensitization of the population is an essential prerequisite for the detection of this hereditary disease of hemoglobin.

It is incomprehensible that Morocco has not yet begun to raise awareness and screen for a disease as rare as thalassemia. Because the socioeconomic benefits would be invaluable at all levels, says Professor Khattab, in an effort to alert public opinion.

^*Dr. Anwar Cherkaoui is a medical doctor. Winner of the higher cycle of Iscae, he was, for thirty years, the head of medical communication at the CHU Ibn Sina in Rabat.