In a tragic development, the Libyan Muscular Atrophy Patients Association announced the death of eight-year-old Mayar Mahmoud Mohammed Muhathab, who suffered from genetic muscular atrophy (limb-girdle). The deceased child, from Tarhuna, joins the list of victims of this devastating disease in Libya.
Desperate Pleas to Authorities
The Muscular Atrophy Patients Association reiterates its bitter complaints about the government’s neglect of patients’ suffering, emphasizing that this disregard exacerbates their deteriorating conditions and makes them feel marginalized. Last September, the association announced the deaths of three children awaiting life-saving gene injections, highlighting the danger of delayed treatment and drug shortages. In August, three children lost their lives in Benghazi, Sabha, and Tripoli, amid a lack of drug shipments since early last year and the cessation of genetic testing.
Promises Hanging in the Air
After repeated protests, the government pledged in August to provide genetic laboratories, import drugs, complete children’s treatment, and implement physical therapy programs. An agreement was also reached to form a committee to establish a genetic testing lab and allocate funds to send patients abroad for treatment. However, the association criticizes these unfulfilled promises, citing the halt of genetic testing, the freezing of patient transfers, and the deaths of six patients since that meeting in August.
Meetings Without Tangible Results
Meetings were held at the Council of Ministers to discuss the cases of 29 patients, and the Director of the Treatment Services Authority confirmed the completion of case registration, the continuation of genetic testing, and preparations for patients to travel abroad for treatment. However, the reality on the ground proves otherwise.
Case Registration
The Director of the Treatment Services Authority in western Libya stated that the authority completed the registration of cases and assessed their health status through a specialized technical committee, while continuing to conduct necessary genetic tests, noting the completion of arrangements for patients to travel abroad for treatment, in coordination with the Medical Supply Authority.
Continued Suffering
Muscular atrophy is a rare disease caused by genetic mutations, leading to gradual muscle tissue loss and movement impairment. In Libya, various types of the disease include spinal muscular atrophy, Duchenne, Becker, limb-girdle, and other rare mutations.
