Parents of children suffering from Thalassemia, also known as Mediterranean Anemia or Sickle Cell Anemia, urged the Saudi Ministry of Health to provide an adequate supply of an improved version of the drug used to treat the disease. Their calls came during a function in Khobar to mark the World Thalassemia Day last week. The new drug, known as Deferasirox in medical terminology, is known to be effective with Thalassemia patients, who must get a daily injection at regular intervals of 10 to 12 hours every day. However, the new drug available in the market under the brand Exjade, and used orally, is only available in small quantities. According to a study, around two to three patients in every 1,000 were diagnosed with Thalassemia in the Kingdom. However, the Ministry of Health could not confirm the incidence rate on Wednesday. A Large number of children suffering from Thalassemia and their families attended the event to mark the World Thalassemia Day, organized by Thalassemia Patients Forum, under the patronage of the ministry, at Dhahran Mall in Khobar last week. In a questioning session that followed lectures by medical experts, the parents and their Thalassemia-afflicted children reminded Minister of Health Hamad Al-Manea of the promise he made during his recent visit to the Eastern Province about supplying the medication to all Thalassemia patients, saying that until now, the drug is only available to a small number of patients. The Obstetrics and Gynecology Hospital in Dammam had hosted an educational and recreational program as part of World Thalassemia Day on April 5, under the sponsorship of the Health Ministry. The medical experts also focused on the psychological impact of the disease and the rehabilitation of patients. The role of families was considered one of the most important aspects of treating Thalassemia and to overcome the psychological consequences of the disease. Medical specialists said that the new Thalassemia drug was a qualitative leap in the treatment of the disease. The new drug substitutes the use of desferal pump, which is injected through the skin or intravenously for a period of 10 to 12 hours daily. Thalassemia patients have to rely on the drug, which prevents the accumulation of iron resulting from repeated blood transfusions. Dr. Zaki Nasrallah, consultant of genetic blood diseases at Obstetrics and Gynecology Hospital in Dammam, said one major benefit of the new drug was that it improved the lives of Thalasemia patients. However, the new drug is administered orally, is less painful and helps in boosting the patient's morale, he said. “This new drug represents a major shift in the lives of Thallasemia patients and their families,” he said. “Exjade is highly efficient in helping patients overcome difficulties, as well as boosting their morale.” Dr. Nasrallah said the new drug has been clinically proven as safe and effective. In his lecture, Wafaa Ramadan, a psychologist, focused on the psychological disorders that a Thallasemia patient can suffer from. He said many Thalasemia patients experience a feeling of weakness, boredom and sometimes anger, associated with the continual daily use of the painful pumps, which are injected into the body for long periods of time. Sometimes, the patients, particularly children and adolescent, give a hard time to their families by refusing to use the pumps, he added. Improper administration of the drug might eventually lead to an accumulation of iron in the body, creating further complications that can be as severe as heart and liver failure, which cause the premature death of the patient. “Providing psychological rehabilitation and moral support is necessary for patients across the Kingdom, and it is as vital as physical rehabilitation,” said Ramadan. Rehabilitation through psychological methods requires close cooperation and intensive coordination between the Ministry of Health and efforts of social institutions that are engaged in the treatment of Thallasemia patients, he said. A number of Thallasemia patients also spoke about their suffering and the methods they adopted to cope with the disease. The organizers presented gifts and certificates of appreciation to the participants, particularly to the children diagnosed with Thallasemia. __
