{"id":18568,"date":"2024-06-03T20:26:06","date_gmt":"2024-06-03T18:26:06","guid":{"rendered":"https:\/\/zawia3.com\/?p=18568"},"modified":"2026-10-09T04:34:03","modified_gmt":"2026-10-09T02:34:03","slug":"thalassemia","status":"publish","type":"post","link":"https:\/\/zawia3.com\/en\/thalassemia\/","title":{"rendered":"Shortages of Medicines and Blood Bags Deepen the Suffering of Thalassemia Patients in Egypt"},"content":{"rendered":"

Salwa Sadek (35, from Sohag Governorate in Upper Egypt) has two children who have had thalassemia (Mediterranean anaemia) since birth. The mother, in her thirties, suffers greatly: for every periodic follow-up with the haematologist monitoring her children, she must travel from her hometown to the capital, Cairo, at great expense.<\/p>\n

According to Sadek, she discovered her children’s illness when they were four months old. She says: “Symptoms appeared early in my children, Nashwa (now 13) and Mohamed (11): their skin turned yellow and they refused to breastfeed at all, and the girl even suffered an enlarged spleen, so the doctors had to remove it when she was three. The two children live on monthly blood transfusions.”<\/p>\n\n\n\n
Thalassemia, or Mediterranean anaemia, is one of the most common genetic diseases<\/a> in Egypt; the latest premarital screening initiative run by the Ministry of Health, a basic condition for marriage, found about 32,591 people with the disease. The disease results in lower haemoglobin levels and red blood cell counts because of a defect caused by genetic mutations.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

Sadek adds: The shortage of their basic medicines worsened four months ago, such as Hydroxyurea medac, a main treatment for their condition that also treats sickle cell disease and cancers, as the Health Insurance Organization, through which the children are treated, replaced it with an Indian alternative whose active ingredient was not effective at all, she says. This pushed her to buy the original drug imported from Germany at EGP 2,800 per pack (about USD 59.2), and she points out that other medicines, such as Decal B12, which treats low blood calcium and anaemia, are unavailable in health insurance hospitals and pharmacies.<\/p>\n\n\n\n
In May last year, 2023, the Ministry<\/a> of Health and Population announced that it was providing medical services to 4,500 thalassemia patients attending all ministry hospitals, university hospitals and specialised blood disease centres nationwide. In 1993, the ministry had established the first centre for treating children with thalassemia at Misr Children’s Hospital.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

\"Thalassaemia
\n

<\/svg><\/div><\/p>\n

But Despite the Announced Government Efforts, Are Thalassemia Patients Still Facing Problems?<\/h3>\n

Mariam Anis (40, an executive director at a company in Cairo) almost lost her life at the age of three, after suffering a severe circulatory collapse and being taken to hospital, where doctors diagnosed thalassemia, requiring regular blood transfusions. It turned out she had inherited the disease from her father’s family, which has multiple cases of blood diseases.<\/p>\n

She tells Zawia3: I am treated under a state-funded treatment decision worth EGP 6,000, renewed every 6 months, covering blood transfusions, medicines and periodic tests; but unfortunately most medicines are either not covered by the treatment decisions or not available to those with health insurance, not to mention the small value of the decision, which does not cover the cost of the medicines and blood we need every month. This comes at a time when we face a severe shortage of thalassemia medicines and the supplements prescribed under the state-funded treatment decision, which forces me to buy them at exorbitant prices from pharmacies at my own expense, if they are available, especially drugs that lower blood iron levels, which must be taken to prevent iron deposits that pose a serious risk to our health. (She points to the shortage of medicines such as Jadenu, which she buys at her own expense for about EGP 7,000 per pack, equivalent to USD 148, while she uses about three packs a month, meaning she pays about EGP 21,000, equivalent to USD 444 a month, for just one of the medicines she needs.)<\/p>\n

She adds: “While the treatment decision provides EGP 1,000 a month, I undergo a blood transfusion that costs me about EGP 1,720 (about USD 36) for two bags of blood,” calling on the Ministry of Health to increase the value of treatment decisions for thalassemia patients to match their monthly needs for medicines and transfusions, and to raise public awareness of the importance of donating blood at central blood banks, given the severe shortage of blood bags at some times of the year.<\/p>\n

She goes on: Last Ramadan, I went to a blood bank for a transfusion at a time when my haemoglobin was low, but there was not enough for my needs or for others at the bank; the doctor told me there had been no donors since the start of the month and my blood type was not available.<\/p>\n\n\n\n
According to the Egyptian Ministry<\/a> of Health and Population, it organised 5,480 blood donation campaigns in 2023, while the number of units of blood and blood products over the past year reached 1,250,000.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

Mariam calls for the provision of the new treatment Reblozyl, with which patients do not need frequent blood transfusions, but its drawback is the high price of the injection, about EGP 193,457 (about USD 4,091), and it has not yet been included in the state-funded treatment protocol. She says: “I contracted viral hepatitis as a result of frequent transfusions and was treated for it this year, but doctors say I could be infected again. I also suffer from osteoporosis and a slipped disc because of thalassemia.” She reveals that her thalassemia was the reason she has not married, because suitors refused to marry a bride with the disease, believing that Mediterranean anaemia is contagious.<\/p>\n\n\n\n
This May, the Ministry of Health and Population announced that it was providing treatment and health counselling to 32,591 cases found to have thalassemia through the President’s “premarital screening” initiative, representing<\/a> 1.9% of the 1.7 million young men and women screened under the initiative, coinciding with International Thalassemia Day, marked on 8 May every year.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

\"Blood<\/p>\n

Ahmed Saad Teima (40, a lawyer from Cairo Governorate) and his sister were born with thalassemia because of a hereditary factor. His sister died at the age of eight after contracting viral hepatitis, active in one of the blood bags she received, while their cousin died after complete liver and kidney failure, with both kidneys stopping working because of high iron levels in the blood; the young man died in 2020 after a long struggle with thalassemia, which cost him his life.<\/p>\n

Teima suffers from fatigue, weakness and an inability to work when his haemoglobin drops, requiring a transfusion. He tells us: I receive three to four bags of blood a month, of which the Ministry of Health covers only two, under a state-funded treatment decision.<\/p>\n

He adds: The decision to dispense “Jadenu” sets a dose of three tablets for all patients, which is not enough, as a patient needs three to nine tablets a day, depending on his condition, weight and age. Meanwhile, the drug has not been dispensed for two months because it is unavailable, and I have not been able to buy it from abroad at my own expense; it must be taken to lower blood iron levels, which, if they rise, lead to liver toxicity, heart muscle failure and kidney failure.<\/p>\n

He says: If a patient buys blood outside the decision, a single bag costs EGP 860 (about USD 18.2), asking how he can make up the difference when his economic situation is poor, and pointing out that the treatment decisions do not cover “Desferal<\/a>“, which stopped being dispensed about five years ago and is used to treat acute iron poisoning immediately and to reduce high blood iron levels after transfusions in anaemia patients. He adds: “Ferriprox and hormone drugs are no longer dispensed, at a time when patients need supplements such as calcium, vitamin D and folic acid, and injections that compensate for the effects of pituitary gland failure, which patients have to buy every month for thousands of pounds, and which were not among the shortages in pharmacies. Searching for these medicines is extremely difficult and exhausting, so thalassemia patients live a real tragedy on every level.” He calls for a count of patients, the provision of treatment, and an increase in the value of treatment decisions for those without health insurance to keep pace with rising medicine and blood prices.<\/p>\n

For her part, Amal El-Beshlawy, professor of paediatrics and haematology at Kasr Al-Ainy Faculty of Medicine, head of the Egyptian Thalassemia Association and a member of the international association since 1992, tells us: “According to a scientific study I conducted, the number of carriers of the disease ranges from 5.5% to more than 9% of Egypt’s total population.”<\/p>\n

The causes of thalassemia are 100% hereditary: either the parents are relatives, or they are not relatives but both carry the disease, while high blood iron levels are linked to how committed the patient is to taking iron-lowering medicines, as she describes.<\/p>\n

\"Pre-marital<\/p>\n

El-Beshlawy describes high iron levels in a thalassemia patient’s body as deadly, because of their effect on the heart, causing weakness and failure of the heart muscle, and liver insufficiency leading to liver cancer, in addition to iron deposits in the pancreas, which cause diabetes, and deposits in the glands responsible for body growth, which prevent children from growing normally, as well as kidney failure. She pointed out that the presidential campaign for those about to marry targeted thalassemia carriers, as each foetus of a carrier has a 25% chance of being born with Mediterranean anaemia.<\/p>\n

\"Figures<\/p>\n

According to El-Beshlawy, thalassemia is divided into several types: carriers, whose condition is mild or moderate and does not require regular transfusions, and severe Mediterranean anaemia, known as thalassemia major, whose patients need regular transfusions every five to seven weeks. She agreed with the testimonies of the patients who spoke to Zawia3 about the weak efficacy of the “Indian Hydrea” drug introduced for thalassemia patients in health insurance, which pushes them to buy the drug from pharmacies at high prices, and pointed to the low value of state-funded treatment decisions, which makes them insufficient to cover patients’ needs for medicines and transfusions.<\/p>\n

Zawia3 contacted Dr Mohamed Hassan Zeidan, director general of the General Administration of Specialised Medical Councils, and also messaged him on WhatsApp, to respond to the complaints of patients treated at the state’s expense, but we received no response from him. We also contacted the health ministry spokesperson, who told us he was abroad, and we had received no government response to the patients’ complaints by the time this report was published.<\/p>\n","protected":false},"excerpt":{"rendered":"

Thalassemia patients in Egypt struggle with shortages of iron-chelating drugs and blood bags, and with state-funded treatment that no longer covers costs.<\/p>\n","protected":false},"author":11,"featured_media":9212,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"footnotes":""},"categories":[413],"tags":[19845,19838,19842,19840,19839,19837,19843,19844,19836,19841],"kateb":[4325],"class_list":["post-18568","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-society-en","tag-blood-disorders-egypt","tag-blood-donation-egypt","tag-health-insurance-organization-egypt","tag-hydroxyurea-shortage","tag-jadenu-deferasirox-shortage","tag-medicine-shortages-egypt","tag-premarital-screening-initiative","tag-reblozyl","tag-thalassemia-egypt","tag-treatment-at-state-expense-egypt","kateb-sohad-elkhodary"],"jetpack_featured_media_url":"https:\/\/zawia3.com\/wp-content\/uploads\/2024\/06\/\u0627\u064a\u0648\u0629.png","_links":{"self":[{"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts\/18568","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\/11"}],"replies":[{"embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/comments?post=18568"}],"version-history":[{"count":5,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts\/18568\/revisions"}],"predecessor-version":[{"id":19113,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/posts\/18568\/revisions\/19113"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/media\/9212"}],"wp:attachment":[{"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/media?parent=18568"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/categories?post=18568"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/tags?post=18568"},{"taxonomy":"kateb","embeddable":true,"href":"https:\/\/zawia3.com\/en\/wp-json\/wp\/v2\/kateb?post=18568"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}