Benghazi – The world commemorates World Hemophilia Day. This day highlights patients’ rights to treatment and care. However, dozens of hemophilia patients in Libya face a different reality. They still suffer from a lack of specialized treatment centers for this rare disease.
What is Hemophilia?
Hemophilia is a rare genetic disorder. It prevents blood from clotting normally. This is due to a deficiency in clotting factors. It leads to bleeding. Bleeding can be external or internal, especially in the joints. This can cause permanent complications. Globally, treatment is available through clotting factor injections. However, this option is not consistently available in Libya.
Azmi Al-Badri never imagined his children would inherit hemophilia. It is the same disease he has lived with since childhood. Today, he is a father of two children with hemophilia. He anxiously monitors their every movement. He fears a minor injury could become a serious danger.
Al-Badri stated, “Even the simplest injury can become a major problem. Bleeding is terrifying for my children. It is an almost daily battle.” He noted that neighboring countries have specialized clinics. These clinics treat hemophilia. This disease does not require high state costs. He added that public clinics are absent. This forces patients’ families to use private clinics. Private clinics offer this service. However, their prices are unaffordable for some patients.
Mohammed Al-Farsi is a patient. He suffers from a disability due to hemophilia. He stated, “Treatment is like oxygen to us. We live in terror without it.” He explained that minor bleeding might not stop without treatment. Internal bleeding, especially in the joints, causes their erosion. This leads to disabilities. He added, “Some children with hemophilia must stay in hospitals for weeks. They receive temporary treatment. This treatment does not end their chronic suffering.”
Al-Farsi revealed registered deaths. One case occurred last Ramadan due to a brain hemorrhage. Additionally, students are deprived of completing their education. This is due to a lack of treatment.
Dr. Amina Baayou is a hematologist. She confirmed the crisis is not only about drug shortages. It also involves poor distribution. Medical supervision is absent. She emphasized the need for specialized centers. These centers require qualified staff. She added, “Hemophilia patients live in constant fear. The solution begins with organized drug distribution. It also requires an integrated therapeutic environment.”
On World Hemophilia Day, patients renewed their demands. They asked for specialized clinics. They also requested modern treatment. They want guaranteed continuous medical follow-up. Patients affirmed their right to treatment. This right should not depend on circumstances.