For two years before speaking to Zawia3 in May 2026, Nada Mansour, who has thalassemia, struggled to obtain several imported medicines, particularly Jadenu. Its active ingredient, deferasirox, is an iron chelator used to remove excess iron, including in patients who receive repeated blood transfusions. Mansour links interruptions in her treatment to health complications that she says included bone damage and two hip-replacement operations. This is her account of how her condition developed, rather than an independent medical determination of the cause of each complication.<\/p>\n
Mansour says she turned to a locally manufactured alternative when the imported medicine became unavailable. She subsequently experienced elevated liver enzymes and stomach ulcers, and believed the treatment was not reducing her iron levels sufficiently. During the two months before her interview, she also struggled to find the alternative in pharmacies. She stopped taking the doses supplied through the state-funded treatment programme and gave them to her sister, who also has thalassemia and was experiencing severely elevated iron levels. The family did not observe an improvement. Her account describes a decision made under pressure; it is not a recommendation to share prescribed medicines or stop treatment without medical supervision.<\/p>\n
An individual’s experience alone cannot establish that an imported medicine is superior to a local alternative, or that a medicine caused every reported symptom. Response, dosage, adherence and other health conditions require specialist assessment. Unless another date is explicitly given, the patient testimonies and prices in this report come from reporting prepared in May 2026.<\/p>\n
\u201cDeaths continue among children and adults with thalassemia in Egypt because of complications from excess iron, amid a lack of specialist care and difficulties obtaining treatment or follow-up outside the health-insurance system,\u201d Mansour tells Zawia3. She also describes shortages of medicines and supplements that she says should be covered by treatment authorisations, including calcium and L-carnitine, which she describes as supporting heart function. Her attribution of deaths to these circumstances reflects her account, rather than a verified assessment of individual cases.<\/p>\n
Mansour also describes difficulties during transfusion sessions. She says some patients have transfusions stopped when complications arise but are then left without adequate follow-up or a suitable route to continuing care. She calls for dedicated thalassemia and blood-disorder centres, essential medicines and equipment, including pumps for Desferal. This medicine contains deferoxamine, another iron chelator. She says repeated intravenous access has damaged some patients’ veins, making subsequent transfusions more difficult. Deferoxamine can be administered under the skin or intravenously according to the treatment plan; her complaint does not mean intravenous administration is inherently inappropriate.<\/p>\n
A distinction is necessary between stopping a transfusion when an adverse reaction is suspected, which may be required for patient safety<\/a>, and leaving someone without assessment, follow-up or a plan for continuing care. The patients’ complaint concerns what happens after a session is interrupted and the difficulty of obtaining an appropriate alternative.<\/p>\n Thalassemia is a group of inherited disorders<\/a> affecting haemoglobin production. It can cause anaemia, fatigue, pallor, an enlarged spleen and bone problems. Severity and treatment needs vary. Carrying the genetic trait is different from having severe thalassemia, and not everyone affected requires regular transfusions. This report focuses on patients who need blood and iron-chelation treatment, and on the gap between approval for treatment and the ability to obtain it.<\/p>\n Published figures measure different populations. In May 2025, the Health Ministry reported providing medical services<\/a> to approximately 24,000 patients, including 18,000 children and 5,500 adults. These are service recipients, not a definitive count of everyone with thalassemia in Egypt. Research provides estimates of the carrier population: a 2020 study<\/a> cited a range from 5.3% to more than 9%, while a 2021 study<\/a> referred to estimates between 9% and 10%. Older literature also repeatedly cited an estimate of approximately 1,000 affected births per 1.5 million live births annually. These estimates concern different periods and cannot be presented as a new national count for 2026. Nor should carrying a gene be confused with having disease that requires regular treatment.<\/p>\n In May 2024, the Health Ministry announced<\/a> that 32,591 cases had been identified through premarital screening, representing 1.9% of approximately 1.7 million people screened. That figure concerns the programme’s screened population and definition of detected cases. It should not automatically be added to the number of service recipients or treated as a count of severe cases. When both parents carry the beta-thalassemia trait, each pregnancy has a 25% chance of an affected child<\/a>. This does not mean that exactly one child in every family of four will have the condition.<\/p>\n Further accounts illustrate continuing difficulties accessing care. On 27 September 2026, Cairo24 reported testimonies<\/a> from patients at the Serum and Vaccine unit in Dokki who said they had been told their treatment authorisations would not be renewed and that they would be transferred elsewhere. They expressed concern about alternative facilities’ capacity to receive them and supply blood. These were the patients’ accounts published on that date; the cited report contained no official response establishing the decision’s reasons or scope.<\/p>\n