The director of the Association, Marian Corral, has participated in the International Duchenne Congress organised by Duchenne Parent Project to talk about access to orphan drugs in Spain.
During her speech, Marian highlighted the main data from the AELMHU 2021 Access Report, especially the data on conditional approvals, the number of medicines pending funding, waiting times and the percentage of medicines that have not yet arrived in Spain, despite having marketing approval.
Dr. Juan Estévez from the Department of Medicines for Human Use of the Spanish Agency of Medicines and Health Products(AEMPS), Dr. Jose Luis Poveda. President of the National Commission of Hospital Pharmacy, Professor. Álvaro Lavandeira. Doctor in Health Law and Pharmacist, Manuel Pérez. President of the Mehuer Foundation, Ms. Silvia Ávila, President of Duchenne Parent Project Spain completed the round table.
Once again, the urgent need to review the current evaluation model for orphan drugs has become clear. Creating a specific one for them or modifying the current one, reflecting the characteristics of these drugs, can provide effective solutions to improve access to these drugs for patients with rare diseases.
