{"id":17884,"date":"2026-10-12T11:00:42","date_gmt":"2026-10-12T09:00:42","guid":{"rendered":"https:\/\/zawia3.com\/?p=17884"},"modified":"2026-10-23T22:23:28","modified_gmt":"2026-10-23T20:23:28","slug":"thalassemia-treatment-access-egypt","status":"publish","type":"post","link":"https:\/\/zawia3.com\/en\/thalassemia-treatment-access-egypt\/","title":{"rendered":"Thalassemia in Egypt: Medicine Shortages and Treatment Approvals That Fall Short"},"content":{"rendered":"

Over the two years preceding her conversation with Zawia3 in May 2026, Nada Mansour, who has thalassaemia, or Mediterranean anaemia, struggled to obtain some imported medicines, foremost among them Jadenu. The drug contains deferasirox, one of the iron-chelating medicines used to remove excess iron, and among those who need them are patients who receive frequent blood transfusions. Nada links the disruption of her treatment to health complications that she says included bone damage and undergoing two hip-joint replacement operations; this is her account of how her condition developed, not an independent diagnosis of the causes of each complication.<\/p>\n

Nada says she turned to a local substitute product when the imported medicine could not be found, but she noticed raised liver enzymes and stomach ulcers, and believed the treatment did not lower her iron to the required degree. In the two months preceding her testimony, she had difficulty finding the same substitute in pharmacies, and she stopped taking the doses dispensed to her at the state’s expense in order to give them to her sister, who also has the disease and was suffering from a severe rise in iron, without an improvement that the family noticed. This testimony conveys an act of necessity by the patient, and does not constitute a recommendation to share medicines or to stop treatment without medical supervision.<\/p>\n

A single individual experience does not on its own prove that an imported medicine is superior to its local substitute, or that all the symptoms are caused by the medicine; the patient’s response, the dose, adherence and accompanying health factors require specialist assessment. The patients’ testimonies and the prices they cite in this report date back to material prepared in May 2026, unless another date is explicitly stated.<\/p>\n

She tells Zawia3: “Deaths keep following one another among child and adult thalassaemia patients in Egypt because of complications of iron overload, amid the absence of specialised medical care and the difficulty of obtaining treatment or follow-up outside the health insurance system, in addition to shortages of other medicines and supplements that are supposed to be dispensed under treatment decisions, such as calcium and ‘L-carnitine’, which supports the heart muscle.”<\/p>\n

Nada draws attention to difficulties during blood transfusion sessions, saying that for some patients the transfusion is halted when complications appear, without them finding appropriate follow-up or an alternative path to complete their care. She calls for specialised centres for thalassaemia and blood diseases, and for the necessary medicines and supplies, among them pumps for Desferal, which contains deferoxamine to remove excess iron. She says that repeated reliance on intravenous access has damaged some patients’ veins and made later transfusions more difficult. Deferoxamine is used subcutaneously or intravenously according to the medical plan; the complaint therefore does not mean that administering it intravenously is wrong in itself.<\/p>\n

A distinction is necessary between halting a transfusion when a harmful reaction is suspected, which is a measure that patient safety may require<\/a>, and leaving the patient without assessment, follow-up and a plan to complete care. The patients’ complaint here centres on what happens after the session stops and on the difficulty of reaching the appropriate alternative.<\/p>\n

Thalassaemia is a group of inherited disorders<\/a> that affect the production of haemoglobin, and may cause anaemia, fatigue, pallor, an enlarged spleen and bone problems. Its severity and treatment needs vary: a carrier of the genetic trait is not the same as a patient with severe thalassaemia, and not all those affected need regular blood transfusions. This report focuses on the suffering of patients who need blood transfusions and iron-removal medicines, and on the gap between the approval of treatment and the actual possibility of obtaining it.<\/p>\n

The figures in circulation differ according to what they measure. In May 2025 the Ministry of Health announced<\/a> that it provided medical services to about 24,000 patients, among them 18,000 children and 5,500 adults; this is a number of beneficiaries of services, not a final count of all those affected in Egypt. Studies, for their part, give estimates for carriers of the genetic trait: a study published in 2020<\/a> presented a range between 5.3% and more than 9%, and a 2021 study<\/a> gave estimates between 9% and 10%. An old estimate of about one thousand affected births per 1.5 million live births annually also recurs in the literature. These are research estimates from different periods, and it is not correct to present them as a new national statistic for 2026, or to confuse carrying the gene with having the disease that requires regular treatment.<\/p>\n

In May 2024 the Ministry of Health announced<\/a> the detection of 32,591 cases within the initiative for screening people about to marry, a rate of 1.9% of about 1.7 million people covered by the screening. The figure concerns the initiative’s sample and its definition of detected cases, and may not be mechanically added to the number of service recipients or treated as a count of severe cases. When both the father and the mother carry the beta thalassaemia trait, the probability of having an affected child is 25% in each pregnancy<\/a> separately, and not necessarily one child in every four children in the family.<\/p>\n

The persistence of the problem of access to the service appears in other testimonies carried by Cairo 24<\/a> on 27 September 2026 from patients at the Serum and Vaccine Unit in Dokki. The patients said they had been informed that their decisions would not be renewed and that they would be transferred to other bodies, and they expressed concern about the ability of the alternatives to receive them and provide blood. Those were the patients’ accounts published on that date, and the report referred to did not include an official response settling the reasons for the decision or its scope.<\/p>\n

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One disease, and burdens that families inherit<\/h2>\n

Five years before she spoke, Ola Gomaa, who has Mediterranean anaemia and is the mother of a girl with the same disease, went on a journey between hospitals and laboratories until her daughter’s diagnosis was confirmed. She says she faced insulting comments from a female doctor because of her marriage to a relative, before being referred to another doctor who took over the follow-up. Marriage between relatives may increase the likelihood that certain genetic traits come together, but it is not a condition for the transmission of thalassaemia; it may be carried by parents who are not related. Genetic counselling remains a way to understand the risk, without blaming the patient or their family.<\/p>\n

However, the suffering continued during medical examinations and periodic blood transfusions, because of the heavy pressure inside government hospitals and health insurance, resulting from the increase in patient numbers compared with the number of specialist doctors, which is reflected in the level of care and the way patients are treated, coinciding with shortages of blood bags, particularly of rare blood groups, especially during seasons and holidays, which pushes some families to search for donors or to turn to charities to provide blood, given that many patients are unable to buy the bags out of their monthly budget.<\/p>\n

Ola and her daughter share with Nada and her sister the complaint about the unavailability of the two imported drugs “Jadenu” and “Desferal”, as they had been more effective in lowering iron levels for them compared with some other substitutes. “Since using the local substitute I have come to suffer from osteoporosis, and recently I began to feel worrying symptoms, among them a rapid heartbeat, and I have fears about the long-term complications,” she tells Zawia3.<\/p>\n

Karim Mosaad, for his part, recounts that thalassaemia left a tragic mark on his family, as two of his siblings died, while his third sister was suffering severe complications at the time he spoke. He says his parents were carriers of the gene without knowing it, and that three of the four children developed the disease. The family’s experience does not contradict the genetic probability referred to, because it is calculated for each pregnancy independently and does not impose a fixed distribution within every family.<\/p>\n

He explains that his sister, whose symptoms of the disease did not fully appear until after she gave birth, needs a blood transfusion twice a month, and because she has a rare blood group, “O negative”, providing blood bags has become a continuous battle for the family, with major financial burdens; amid the medicine shortages and the difficulties of providing blood, the patient suffered from an enlarged spleen and severe health complications.<\/p>\n

The family’s suffering increased about a year before the interview, when his sister’s daughter, then aged three, showed signs of pallor, fatigue and low haemoglobin, before being diagnosed with thalassaemia and starting periodic blood transfusions. Karim says the child needs a bag of blood every month or two, and that her haemoglobin would drop to 7 or 8 grams per decilitre. He fears that delay could expose her to complications; these figures are part of her family’s account, while the treating team determines the timing of transfusion according to an assessment of the case.<\/p>\n

The family states that the child’s treatment included folic acid, Fedrop, L-carnitine, Jadenu 360 and Desferal, but it faced difficulty finding the essential medicines, especially iron chelators. Karim recalls a price of about EGP 80 for a pack of Desferal 500 mg containing ten vials, compared with offers on the informal market reaching thousands of pounds. No dated pricing document was available confirming that the EGP 80 figure was the official price in force at the time of the interview; it is therefore given as the price mentioned by the source, not a current approved price.<\/p>\n

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A treatment decision that does not cover the patient’s journey<\/h2>\n

Thalassaemia patients face growing financial burdens because of the rising cost of blood bags and transfusion supplies, at a time when the value and duration of treatment decisions do not match the patients’ actual needs. She says the decisions she relies on are issued for only six months, which forces patients to wait until the decision’s renewal date despite their urgent need for a transfusion, or to resort to buying blood bags and transfusion supplies at their own expense, a burden that exceeds their financial means, especially as many cases need filters, washing and bags prepared to deal with antibodies, according to Fatma Ali, a Mediterranean anaemia patient.<\/p>\n

She explains to Zawia3 that some hospitals refuse to complete blood transfusions for patients if any health complications appear, such as a rise in temperature or heart or blood pressure disturbances, and ask them to complete the transfusion outside the hospital, despite the difficulty of finding places that accept to carry out transfusions, and the high cost of the service outside, at between EGP 700 and EGP 1,000 per bag, in addition to the costs of tests, scans and transport.<\/p>\n

She shows that patients also suffer from a shortage of iron-lowering medicines, which poses a direct threat to the lives of patients who continue to receive blood without the medicines needed to deal with iron deposits, as well as a shortage of the drug “Desferal”, which patients often do not find within treatment at the state’s expense and health insurance and are forced to buy from outside, increasing their economic burdens.<\/p>\n

She stresses that many patients are unable to work because of the health complications accompanying the disease, such as osteoporosis, chronic pain and constant fatigue, which makes bearing those expenses extremely difficult, calling for an increase in the value and duration of treatment decisions, and for linking the treatment and blood transfusion decisions in a single unified decision instead of separating them, in a way that ensures patients’ easy access to the service, and for improving the entire healthcare system in terms of treatment decisions, blood provision and medical care, and allocating places for treating blood diseases and their complications.<\/p>\n

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Medicine shortages and black-market exploitation<\/h2>\n

Mediterranean anaemia patients in Egypt face intertwined crises related to the shortage of medicines and their rising prices, along with problems connected to health insurance and treatment at the state’s expense, in addition to weak public and medical awareness of the nature of the disease, which is reflected in the way they are dealt with and in the accuracy of diagnosis in some governorates, and pushes many patients to move to Cairo to receive treatment and follow-up in specialised hospitals, foremost among them Abu El-Reesh University Hospital, which is under heavy pressure as a result of growing patient numbers, according to Sara El-Araby, administrative director of the Egyptian Society of Friends of Mediterranean Anaemia Patients.<\/p>\n

She stresses that the financial value set for treatment decisions does not match the actual needs of patients, especially as some patients need large quantities of blood and treatment monthly that exceed the amounts allocated, explaining that the separation of treatment decisions from blood transfusion decisions came after demands from doctors and specialists, because some patients were using up the entire value of the decision on blood transfusion without being able to obtain iron-lowering medicines.<\/p>\n

El-Araby explains that patients who depend on blood transfusion need it to maintain their haemoglobin, but repeated transfusion may lead to iron accumulation, threatening organs such as the heart, the liver and the glands in the absence of treatment and follow-up. Ferritin measurement is used to help monitor iron stores, but it is not synonymous with the deposited iron itself, and it is interpreted within the medical assessment, not on its own.<\/p>\n

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She tells Zawia3: “The society tries to provide multifaceted support to patients, including providing some medicines and blood bags and psychological and social support, but as an institution based on donations, it does not have the capacity to cover the needs of all patients because of limited resources and the growing number of cases.”<\/p>\n<\/blockquote>\n

She points out that dealing with iron-lowering medicines differs from one patient to another according to the nature of the response and the side effects; some patients respond to certain medicines, while others suffer complications that require specialist doctors to change the treatment plan, in order to reach the most suitable treatment for each case.<\/p>\n

The society’s director stresses the importance of early diagnosis, and points to the possibility of early detection of the genetic defect instead of waiting years of unorganised management of anaemia. A distinction must be made here between the possibility of carrying out early genetic tests and the timing of the onset of symptoms, which varies with the type and severity of the disease. She calls for medical and public awareness, screening and genetic counselling before marriage, along with supporting patients and facilitating follow-up and continuous treatment.<\/p>\n

Sameh El-Farmawy, founder of the Thalassaemia and Liver Patients Support Group, meanwhile stresses that people with blood diseases in various governorates face a worsening crisis because of the shortage of essential medicines, foremost among them iron-lowering medicines, warning that the continued shortage of treatment leads to a serious deterioration in patients’ health, especially those who depend on periodic blood transfusion, and also changes patients’ physical appearance as a result of its effect on the bones and skin, exposing them to bullying and social isolation.<\/p>\n

He explains to Zawia3 that the treatment crises are not limited to thalassaemia patients, but extend to patients with other blood diseases, amid repeated appeals from patients who rely on treatment decisions at the state’s expense, which, according to him, are not enough to cover their treatment needs, as the cost of blood transfusion, treatment and medicines is deducted from them all at once, causing the value of the decision to run out quickly.<\/p>\n

He says: “Support groups have recorded deaths among child patients in recent months, as a result of high iron levels, which make them vulnerable to heart complications and poor growth, because of the shortage of treatment, particularly the drug Desferal, which is available only at the El-Esaaf Pharmacy in Cairo and in very limited quantities, forcing patients and their families to travel from distant governorates and wait in long queues to obtain just one pack.”<\/p>\n

El-Farmawy accuses some traders of seizing the medicine and selling it at multiplied prices on the black market. He cites a price of about EGP 240 per pack, compared with offers reaching EGP 5,000, while some patients may need two packs a month, according to him. The value of the base price here differs from what Karim mentioned, and no documents were provided that would make it possible to unify the pricing date and pack size in the two accounts; the report therefore does not adopt a single rate of increase or treat these figures as current official prices.<\/p>\n

El-Farmawy believes that the crisis is also linked to weak public awareness of thalassaemia, especially regarding marriage between relatives and genetic testing, calling at the same time for the establishment of specialised centres for treating blood diseases and the expansion of treatment provision in the governorates, along with the launch of awareness campaigns and psychological support for patients and their families.<\/p>\n

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A limited budget and import policies<\/h2>\n

In her testimony at the time the material was prepared in May 2026, MP Irene Saeed, a member of the Health Committee of the House of Representatives and head of the parliamentary bloc of the Reform and Development Party, criticises the policy of limiting the import of some medicines in favour of localising domestic industry, considering that “localising industry does not mean banning the imported alternative”, and stressing that patients’ bodies respond to treatments differently from one person to another, and that some patients have become accustomed to specific medicines that have achieved effective results with them for years, so banning their circulation pushes patients to resort to the black market and smuggled medicines.<\/p>\n

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She tells Zawia3: “The lack of clarity in medicine policies creates a state of uncertainty even among foreign companies operating in the Egyptian market, but medicine is not a luxury commodity that can be dealt with by the logic of a complete ban; rather, alternatives must be made available, and competition, quality and price left to determine the choices of patients and doctors.”<\/p>\n<\/blockquote>\n

The MP points out that the digitisation of the procedures for treatment at the state’s expense has helped improve the system compared with the old paper-based system, but she acknowledges that the limited budget for treatment at the state’s expense, along with the growing number of people needing support because of economic conditions, lead to slowness in issuing decisions and insufficient treatment coverage for some chronic and complex cases.<\/p>\n

Regarding patients’ complaints about blood and the shortage of some blood groups, the head of the party’s parliamentary bloc stresses that the blood bank system needs mechanisation and greater transparency, with tighter oversight inside hospitals to confront brokering and trafficking in blood bags, calling for a clear electronic system that enables the patient to know where bags are available and the quantities available.<\/p>\n

The MP stresses the need to expand early detection and genetic testing programmes, drawing attention to the importance of carrying out foetal tests in cases of high-risk genetic diseases, considering that investing in prevention and early detection may relieve the state of huge treatment burdens in the future, and limit the birth of new generations suffering from complex chronic genetic diseases.<\/p>\n

This report does not include a regulatory decision establishing a comprehensive ban on importing the medicines whose shortage patients complained about. The MP’s criticism of the import policy does not remove the need to distinguish between the unavailability of a product, a stumble in its supply or distribution, and the existence of a legal ban on it.<\/p>\n

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Deaths recounted by associations, and questions about the figures<\/h2>\n

Mahmoud Fouad, head of the Right to Medicine Association, says the association recorded the deaths of more than 18 children with thalassaemia during the months preceding his testimony, as well as deaths among haemophilia patients, and links this to the shortage of essential medicines within the system of treatment at the state’s expense, especially iron-removal medicines. The report’s material did not include documented lists of the cases or medical reports establishing the cause of each death, and therefore the number, and the causal relationship attributed to the medicine shortage, remain an estimate and an account of the association, not an independent tally that the report verified.<\/p>\n

He tells Zawia3: “What is happening constitutes a violation of patients’ right to obtain treatment, and the death of a child because a medicine is unavailable is a responsibility that cannot be justified, especially as some of the required medicines are not expensive compared with the scale of the crisis.”<\/p>\n

Fouad links the crisis to what he says is accumulated debt owed by the Unified Procurement Authority and delays in paying pharmaceutical companies their dues, which affected the supply of some products. The report’s material did not include financial statements establishing the size of this debt or its effect on a particular product. He adds that allocations for treatment at the state’s expense do not keep pace with rising prices, the change in the exchange rate and growing population needs, which he sees as additional pressure on patients’ access to treatment.<\/p>\n

Fouad estimates the number of registered thalassaemia cases in Egypt at more than 300,000, and the carriers of the genes associated with it at more than five million. This estimate was not accompanied by a national register or a statistical methodology that would allow it to be verified, and the figure does not necessarily measure the same group covered by the ministry’s announcement about service recipients. He stresses the importance of blood and iron-lowering medicines for cases that depend on them; medically, however, the need for regular blood transfusion cannot be generalised to carriers of the trait or to all degrees of the disease.<\/p>\n

He also points to patients’ suffering inside blood banks, explaining that some hospitals refuse to complete blood transfusions in certain cases for fear of complications or problems related to the quality of the blood, leaving patients and their families in a constant search for places that accept to complete treatment.<\/p>\n

He calls for urgent government intervention to resolve the crisis of thalassaemia and haemophilia medicines, to pay pharmaceutical companies their dues and to ensure the regular provision of treatment within the state-expense system, stressing that patients live in a whirlpool of daily torment between the shortage of treatment and the difficulty of obtaining blood and appropriate healthcare.<\/p>\n

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Spending and oversight at the heart of the crisis<\/h2>\n

Dr Mohamed Hassan Khalil, coordinator of the Committee for the Defence of the Right to Health, believes that the roots of the crisis include weak health spending and wide reliance on imports. He explains that the decline in the value of the pound raised the cost of imported medicines and manufacturing raw materials, while allocations for treatment at the state’s expense did not increase to the necessary degree in his view, which weakened patients’ ability to obtain regular treatment.<\/p>\n

He tells Zawia3: “The shortage of medicines is not linked only to imports, but also to weak local manufacturing of vital and complex technological medicines, even though Egypt has a scientific infrastructure that allows them to be produced, amid the absence of a national strategy for pharmaceutical manufacturing, which leaves patients ‘at the mercy of the dollar and imports’.”<\/p>\n

Khalil criticises the reorganisation of the drug regulatory system, and believes that examining patients’ complaints about efficacy and side effects requires independent and strong research-based oversight. On the other hand, the Egyptian Drug Authority<\/a> states that it was established by Law 151 of 2019 to replace previous regulatory bodies, and that its mandate includes monitoring the quality, efficacy and safety of products. His criticism therefore revolves around the performance and independence of the system as he sees it, and does not mean the absence of a legal body tasked with oversight. Patients’ testimonies alone are not sufficient to judge that local substitutes are of lower quality.<\/p>\n

Khalil believes that the complexity of treatment procedures, the separation of approvals and the lengthening of the time needed to obtain them reflect a tightening of spending, and he estimates government health spending at about 1.3% of gross domestic product. He did not specify in his testimony the year of calculation or its items, and the report therefore does not present the percentage as an updated measure that can be compared directly with the constitutional entitlement. Indeed, Article 18<\/a> stipulates a minimum for government spending on health of 3% of gross national product, to be increased gradually until it is in line with global rates; it does not specify a rate of 6%. Gross national product and gross domestic product are also different measures.<\/p>\n

With the continuing shortage of medicines and the blood transfusion crises, the daily treatment journey of Mediterranean anaemia patients in Egypt turns into an open battle with pain, time and cost, while families remain stuck between limited treatment decisions, a black market that exploits need, and hospitals suffering growing pressure and a shortage of resources.<\/p>\n

Demands by patients and civil society organisations are escalating for the provision of vital medicines, the development of the blood bank system and an increase in allocations for treatment at the state’s expense, along with the expansion of genetic testing and early detection, as necessary steps to limit the suffering of thousands of patients and their families.<\/p>\n","protected":false},"excerpt":{"rendered":"

Testimonies from patients and their families reveal the burdens of the shortage of iron chelators and blood bags, and the limits of decisions on treatment at the state’s expense, amid questions about funding and oversight.<\/p>\n","protected":false},"author":4,"featured_media":18125,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"footnotes":""},"categories":[390],"tags":[18173,401,11688,18174,18172,18175,11983,18171],"kateb":[1550],"class_list":["post-17884","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-human-rights","tag-blood-transfusions","tag-egypt","tag-healthcare-access","tag-iron-chelation","tag-medicine-shortages","tag-right-to-health","tag-state-funded-treatment","tag-thalassemia","kateb-aya-yasser"],"jetpack_featured_media_url":"https:\/\/zawia3.com\/wp-content\/uploads\/2026\/10\/thalassemia-cover-wide.png","_links":{"self":[{"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts\/17884","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/comments?post=17884"}],"version-history":[{"count":3,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts\/17884\/revisions"}],"predecessor-version":[{"id":23421,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts\/17884\/revisions\/23421"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/media\/18125"}],"wp:attachment":[{"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/media?parent=17884"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/categories?post=17884"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/tags?post=17884"},{"taxonomy":"kateb","embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/kateb?post=17884"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}