Lifesaving drugs for thalassemia are no longer available in Sardinia. Associations and parliamentarians are raising the alarm, calling for clarity and immediate action from the AIFA (Italian Medicines Agency), the Ministry of Health, and the Sardinia Region. "There is a serious and persistent shortage of essential medications for the treatment of thalassemia major, a hereditary genetic disease that is especially common in Sardinia," the National Committee of Infected Blood Victims, the Sardinia Cell of the Luca Coscioni Association, and the Tonino Pascali-Sardegna Radicale Association said in a joint statement.
They specifically mention deferasirox, a drug essential for removing excess iron caused by transfusions: it is reportedly unavailable in all its formulations, both brand-name and generic . AIFA itself has confirmed the drug's shortage via its reporting platform. And, as if that weren't enough, it is expected to be unavailable at least until October and November of this year. Sardinia, as is well known, is the region with the highest number of thalassemia cases compared to other parts of Italy: the incidence of the disease is approximately five times higher than the national average (1 patient in 600 inhabitants versus 1 in 2,500-3,000).
" Patients and families are reporting serious difficulties in ensuring continuity of treatment , with documented cases of suspension or reduction of treatments that expose them to significant risks to their health and quality of life," the statement continues. Among the most prominent patients, Ivano Argiolas reported having a blood ferritin level of 500 nanograms per milliliter, well above the normal range of 15 to 300 nanograms per milliliter. This concrete data demonstrates the urgency and severity of the pharmaceutical shortage.
Thalassa Azione Onlus, the leading national association for thalassemia patients, has publicly denounced the lack of supplies and clear communication. After numerous reports from associations, doctors, and patients, the Region intervened on July 19th, sending an urgent communication to the Ministry of Health and AIFA, requesting extraordinary measures to ensure supplies.
