{"id":16968,"date":"2025-03-22T18:51:30","date_gmt":"2025-03-22T16:51:30","guid":{"rendered":"https:\/\/zawia3.com\/?p=16968"},"modified":"2026-10-07T09:21:27","modified_gmt":"2026-10-07T07:21:27","slug":"muscle-atrophy","status":"publish","type":"post","link":"https:\/\/zawia3.com\/en\/muscle-atrophy\/","title":{"rendered":"Egypt\u2019s Neuromuscular Patients Face a Daily Struggle for Treatment and Care"},"content":{"rendered":"

Every day, Mona, 42, from Minya, carries her 24-year-old son Abdel Hadi on an exhausting journey to a hospital around ten kilometres from home. He has spinal muscular atrophy and needs assisted breathing after his condition deteriorated.<\/p>\n

Mona cannot afford his treatment amid high prices and difficulties accessing medicines in Egypt. Yet the journey itself worries her less than the prospect of arriving to find no specialist able to manage his condition. She says this frequently happens, forcing her to return without him receiving care.<\/p>\n

\u201cI am the mother of three children with muscle-wasting disease: Abdel Hadi, 24, Mohamed, 21, and Abdel Rahman, 14,\u201d Mona tells Zawia3. \u201cThey have no treatment or medical care. The biggest problem is the breathing difficulty, which requires special attention and respiratory equipment.\u201d<\/p>\n

She says all three lack health insurance and receive no support from public hospitals despite her efforts to obtain assistance through Takaful and Karama. She pays treatment expenses herself and says lengthy treatment for Abdel Hadi and his brothers brought no improvement.<\/p>\n

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Mona asks for breathing equipment and appropriate specialist care so her children can maintain a more stable condition and a better quality of life.<\/p>\n<\/blockquote>\n

Patients interviewed by Zawia3 describe medicine shortages, sharply rising prices and inadequate services, including a lack of relevant specialists in government hospitals. Families of children with Duchenne muscular dystrophy also say the Health Insurance Authority has failed to implement court orders requiring treatment, despite official initiatives and repeated promises.<\/p>\n

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Different diseases, different treatment needs<\/h2>\n

Doaa Atef Mekkawy, a neurology consultant and lecturer at Kasr Al Ainy\u2019s Faculty of Medicine, explains that the Arabic expression commonly used for muscle-wasting disease covers conditions that are medically distinct. Weakness does not always mean loss of muscle mass: a muscle can look normal yet function poorly, or appear enlarged without a corresponding improvement in strength.<\/p>\n

She distinguishes primary muscle disorders, involving the muscle\u2019s structure or components, from secondary weakness caused by another condition, such as thyroid or adrenal disease. Treating the underlying cause is essential in the latter group. Some medicines can also cause muscle weakness as a side effect, she says.<\/p>\n

Mekkawy says Egypt lacks reliable prevalence studies. She cites international rates of one in 5,000\u201310,000 for particular inherited disorders, but these should not be taken as a single rate covering every form of muscle weakness or wasting.<\/p>\n

These rare diseases have limited specialist provision, she says. Until recently, few targeted medicines were available, but research has produced treatments for specific disorders, including Duchenne muscular dystrophy, whose complications can be severe.<\/p>\n

Mekkawy says some medicines are unavailable in Egypt but many can be accessed following confirmation of the genetic diagnosis. Patients must undergo specialist assessment, sometimes by several committees, and complete other procedures before receiving medication. This assessment contrasts with families\u2019 accounts of being unable to obtain the treatment prescribed for them.<\/p>\n

Where appropriate medicines cannot be obtained, she recommends an individually designed physiotherapy programme supervised by practitioners experienced in muscle disorders. The aim is to maintain function without overstraining muscles, alongside mobility aids, practical guidance and continuing communication about problems as they arise.<\/p>\n

Care must extend beyond muscle weakness. Some disorders also affect the heart and breathing, making collaboration with cardiologists and other specialists essential. Patients may experience frustration, depression, anxiety or stress and require psychological support.<\/p>\n

\u201cWe need continuing coordination among specialties to provide comprehensive care,\u201d Mekkawy says. Rehabilitation and aids such as walking sticks or walkers can help preserve mobility, while the overriding goal is to protect life and quality of life.<\/p>\n

The conditions discussed in this report<\/a> include spinal muscular atrophy (SMA), which affects the nerve cells controlling muscles, and muscular dystrophies, which primarily affect muscle. Duchenne muscular dystrophy usually affects boys from early childhood and can progressively involve walking, breathing and cardiac function. Facioscapulohumeral muscular dystrophy affects the face, shoulders and upper arms, while limb-girdle muscular dystrophies predominantly affect shoulder and hip muscles. These conditions are not interchangeable diagnoses.<\/p>\n

Treatments are likewise diagnosis-specific. For example, the FDA\u2019s 2021 approval information for Amondys 45<\/a> concerns Duchenne patients with a confirmed mutation amenable to exon 45 skipping. It is not a medicine for all forms of muscular dystrophy or SMA.<\/p>\n

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Court orders families say remain unimplemented<\/h2>\n

Several families told Zawia3 they had obtained judgments requiring the Health Insurance Authority to provide lifelong treatment free of charge but had still not received it.<\/p>\n

Mina Nagy, father of a child named Saeed who has Duchenne muscular dystrophy, says he obtained a binding judgment in 2023 that remained unimplemented. According to him, the authority said the medicine was unavailable despite earlier ministry announcements that treatment had been secured.<\/p>\n

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A court judgment obtained by Zawia3 concerning a child\u2019s right to treatment through the Health Insurance Authority. Personal details are obscured.<\/figcaption><\/figure>\n

In June 2021, the Health Ministry announced plans to provide treatment<\/a> through a presidential initiative<\/a>. It designated 24 medical centres to receive patients and provide services, including gene therapy for eligible children through health-insurance programmes.<\/p>\n

In July that year, it signed a cooperation protocol with Biologix<\/a> to provide treatment for children over two. In August, the ministry announced treatment at Nasser Institute\u2019s SMA centre<\/a>.<\/p>\n

Then institute director Mahmoud Saeed described the programme as fulfilling a long-awaited hope, citing a treatment cost of around $3 million that put it beyond most families\u2019 reach. He said Egypt had made the medicine available to citizens despite that cost.<\/p>\n

The original report dates an Administrative Court decision to 2021, while its linked account was published in October 2022<\/a>. It describes an order requiring the Health Ministry and Health Insurance Authority to include Duchenne muscular dystrophy and Amondys 45 in treatment protocols.<\/p>\n

Sharifa Motawa, head of the Egyptian association for patients with muscle-wasting diseases, says that decision had still not been implemented when she spoke to Zawia3. She says other patients had obtained judgments establishing their entitlement to medicines but continued to struggle for access.<\/p>\n

Article 18 of Egypt\u2019s Constitution<\/a> guarantees the right to health and comprehensive care meeting quality standards, and requires the state to support public facilities, improve their efficiency and ensure fair geographic distribution. Law 99 of 1992<\/a> establishes health insurance for students, including children in kindergarten and pupils in basic, general secondary and technical education.<\/p>\n

Motawa describes patients\u2019 lives as a continuous struggle. She says limited specialist staffing and a lack of relevant services in public hospitals make care particularly difficult when complications arise, putting lives at risk and placing heavy pressure on families.<\/p>\n

She says the wide range of disorders\u2014around 30 types in her account\u2014requires different medicines, yet patients remain unable to obtain them despite repeated initiatives. Imported medicines are often unaffordable.<\/p>\n

Motawa cites a global estimate of one person in 3,400 and suggests more than a million patients in Egypt. That extrapolation is not mathematically supported: a rate of one in 3,400 would yield about 29,400 people in a population of 100 million. Without disease-specific Egyptian data, it cannot establish the total number of patients.<\/p>\n

She also refers to a gene treatment costing around EGP 150 million, available in some Gulf states, and calls for Egypt to examine access to such therapies. Gene therapies can offer important benefits for eligible patients but should not be described as a universal, complete cure for all these disorders.<\/p>\n

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\u201cWe want real measures to help us and provide the care we need\u2014not just initiatives and celebrations every year while the daily suffering continues,\u201d Motawa says.<\/p>\n<\/blockquote>\n

She points to a new unit at El Demerdash Hospital but says one unit cannot meet patients\u2019 needs nationwide. Her demands include medicine access, specialist care and study of suitable genetic therapies.<\/p>\n

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Families bear the cost<\/h2>\n

Hanaa Abu El Saad, a teacher from Beheira, says her eight-year-old son has SMA. Delayed walking and difficulty moving his limbs became apparent early in childhood. After repeated medical visits, he was diagnosed with the rare condition.<\/p>\n

Hanaa describes access to treatment as the biggest obstacle. She cites Zolgensma gene therapy at a price of around $3 million, far beyond a family\u2019s means, while noting that other, less expensive medicines should be available through the ministry or insurance system. Her quoted price reflects her account rather than a verified purchase price or an assessment of her son\u2019s eligibility.<\/p>\n

Her attempts to obtain treatment through public hospitals brought repeated explanations that resources were limited and she should wait, without a clear timetable.<\/p>\n

Her son also needs ongoing physiotherapy to preserve mobility, but she cannot consistently afford it. The family relies on charities and occasional discounts from doctors, which she says remain insufficient.<\/p>\n

\u201cWhat hurts most is feeling helpless when he asks why he cannot play like other children or walk normally,\u201d Hanaa tells Zawia3. She asks the state to provide treatment or financial support and warns that waiting means further deterioration.<\/p>\n

Mahmoud El Ghitany, 45, from Assiut, says his 11-year-old daughter\u2019s symptoms began around age four. Her ability to walk progressively declined until she depended entirely on a wheelchair.<\/p>\n

\u201cI work in agriculture, and my income barely covers our daily needs,\u201d he says. \u201cEven routine tests and basic medicines have become a major burden.\u201d He describes costly international treatments as beyond his reach.<\/p>\n

Mahmoud says requests to the ministry and charities produced discouraging responses. Lack of local specialists adds travel to Cairo or other major governorates to the family\u2019s expenses. He wants his daughter to have the chance to receive appropriate care.<\/p>\n

Fatma, 32, from Giza, describes the struggle of caring for her 14-year-old daughter Mariam. Difficulty moving and walking began when Mariam was five, and diagnosis followed a series of tests after initial uncertainty.<\/p>\n

\u201cI wanted to see her go to school and play with her friends like other children,\u201d Fatma says. As the condition worsened, she felt the medicines available addressed symptoms without slowing deterioration.<\/p>\n

She puts monthly medication costs at EGP 3,000\u20135,000, in addition to continuing physiotherapy. Medicines are often unavailable locally, and expensive when found.<\/p>\n

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\u201cShe can now barely stand on her own and needs help with even simple activities. My only dream is to see her walk and play like other children.\u201d<\/p>\n<\/blockquote>\n

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Specialist services, unaffordable therapies and an official funding gap<\/h2>\n

Mahmoud Fouad, a rights advocate and director of the Egyptian Center for the Right to Medicine, tells Zawia3 that patients face severe difficulties because of inadequate medical resources, treatment shortages and high prices.<\/p>\n

He says his organisation obtained State Council judgments obliging authorities to provide treatment, but implementation is difficult because of the cost. Comprehensive testing units in public hospitals, he argues, would already represent a substantial improvement.<\/p>\n

Fouad recalls two patients, Samira and Osama, who approached the centre around six years earlier and later died from complications. They were part of a group of 25 patients from different governorates seeking assistance.<\/p>\n

At the time, the centre sought supportive medicines and contacted authorities to improve access. Fouad says patients need tests roughly every six months, costing more than EGP 4,000 per round, or around EGP 8,000 annually\u2014a heavy burden for poor households without regular assistance.<\/p>\n

He says cooperation with then health minister Ahmed Emad helped establish four specialist units in university hospitals for necessary examinations and tests, easing costs for patients. However, progression affecting the heart and lungs can become fatal; he says that was the outcome for Samira and Osama, who died within a short period of one another.<\/p>\n

Fouad cites the extreme cost of some treatments, mentioning an injection priced at EGP 33 million. This figure and the other prices quoted by interviewees concern unspecified or different therapies and periods and should not be treated as a single standard price.<\/p>\n

He also describes cooperation with Ain Shams neurologist Nagia Fahmy on treatment protocols and patient data. Thousands registered at Nasser Institute seeking care, he says, prompting restrictive eligibility conditions while demand still exceeded capacity.<\/p>\n

Patients\u2019 rights also include economic and social support, Fouad says, citing Takaful and Karama payments, Social Solidarity Ministry assistance and transport and cultural concessions. He nevertheless identifies specialist units and qualified neurologists in every university hospital as a central unmet need.<\/p>\n

Zawia3 sought official comment from doctors and officials at the Health Insurance Authority, the Health Ministry, Kasr Al Ainy, Ain Shams and the pharmaceutical industry chamber. They declined to comment, saying they lacked information, although some had worked on the ministry\u2019s treatment initiative.<\/p>\n

An administrative source inside the Health Insurance Authority, speaking anonymously, attributed failure to dispense medicines under the initiative to insufficient funds to import them.<\/p>\n

The source said the treatments cost the state substantial sums and there was no current budget for the initiative. In the source\u2019s assessment, currency pressures made a near-term resolution unlikely.<\/p>\n

The families\u2019 accounts reveal a gap between official announcements and their ability to obtain medicines, breathing support, physiotherapy and specialist care. Court orders, they say, have not reliably translated into treatment.<\/p>\n

Addressing that gap requires implementation of patients\u2019 legal entitlements, accessible multidisciplinary services and a realistic route to diagnosis-appropriate medicines, including suitable genetic therapies where indicated. For families already facing daily deterioration, another promise is not enough.<\/p>\n","protected":false},"excerpt":{"rendered":"

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