Anger is mounting across Libya as families accuse Prime Minister Abdul Hamid Dbaiba’s government of abandoning children suffering from spinal muscular atrophy (SMA), a rare and deadly genetic condition.
Parents say the government’s inaction has left their children to face certain death, despite the existence of an effective treatment abroad.
The plight of young Ilaf from Misrata has become a symbol of this growing crisis. Too weak to walk, she has been seen holding protest signs outside the Prime Minister’s Office in Tripoli and the Attorney General’s Office, pleading for her right to treatment.
Alongside her, one-year-old Wateen Adel Abu Haliqa from Zliten is also fighting for her life. They are among 29 Libyan children in desperate need of Zolgensma, a groundbreaking but costly gene therapy available in the United Arab Emirates. Families say the only obstacle is the government’s refusal to provide funding and approve medical transfers.
Civil society groups, including the Association of SMA Patients, describe the situation as “a race against time.” Every day without treatment brings these children closer to death. Parents accuse Libya’s Center for Supporting and Developing Health Services of deliberately delaying their cases, despite official confirmation that medical files were complete.
Outrage has grown further after statements from the Ministry of Social Affairs and the Social Solidarity Fund, which described conditions for disabled people in Libya as “comfortable.” Families say these comments are detached from reality, pointing to the suspension of home allowances for over seven years, a basic pension of only 650 dinars amid soaring inflation, and a complete lack of basic equipment such as wheelchairs.
