Authorities from the National Resources Fund (FNR) and the Social Security Bank (BPS) presented this Tuesday, August 23, a new program for the treatment of spinal muscular atrophy that implements the financing of high-cost medication for patients.
The initiative avoids the presentation of protection resources to access medication, which will be delivered free of charge to patients. The coordination will be in charge of the National Reference Center for Congenital Defects and Rare Diseases (Crenadecer).
The president of the BPS, Alfredo Cabrera, recalled the concretion of a previously established agreement between the Executive Power and the FNR with the laboratories that provide the medication used in the treatments. In addition, he stated that this achievement will prevent the families of patients from having to file appeals to access treatment.
In this sense, during the presentation, the authorities disseminated the program approved by the FNR Advisory Commission, which establishes a protocol to specify said benefit.
For her part, the general director of the FNR, María Ana Porcelli, explained that the coordination of the program will be in charge of Crenadecer, which will provide a multidisciplinary approach with psychosocial, somatic and rehabilitation actions.
Regarding the procedure, he specified that patients will be referred to that center by their health providers and the process to access treatment will begin there. He also argued that these are “very high cost” drugs, and that they are expected to reach patients in a timely manner, to ensure adequate care.
Likewise, he highlighted the importance of training more professionals specialized in pathology and diagnosing spinal muscular atrophy in time.
