ilS celebrated its Second Edition of the ilS Speaker Series(SM)
ilS celebrated its Second Edition of the ilS Speaker Series(SM)

The Second Edition of ilS Speaker SeriesSM, which was focused on Rare Diseases, was celebrated last Friday April 27th in Madrid.

Under the tilte: "Orphan Drugs: How to Speed Up their Access to Patients with Rare Diseases?" ilS Speaker Series laid the grounds to discuss about the patient and market needs in regards to Rare Diseases and Orphan Drugs.

Mr. Juan Carrion, President of the Spanish Federation of Rare Diseases (FEDER) and Dr. Regina Revilla, President of the Spanish Association of Biocompanies (ASEBIO), opened the session.

Mr. Justo Herranz, member of the Executive Committee of the Spanish Federation of Rare Diseases (FEDER), explained the current situation in Spain in regards to Rare Diseases and the availability of Orphan Drugs to the patients who most need them.

A round table moderated by ilS was held including the following members: Dr. Francesc Palau, Director of the Rare Diseases Center at the Hospital Sant Joan de Déu (HSJD), Dr. Antonio Blázquez, Head of Department of Medicines for Human Use of the Spanish Medicines Agency (AEMPS), Mr. Julio Sánchez Fierro, VP of the Spanish Association of Healthcare Law, Ms. Concha Serrano, Coordinator of the Health Commission of ASEBIO, and Ms. Mercedes Martínez, Technical Advisor of the Ministry of Health, Social Services and Equality (MSSSI).

Several suggestions in how to speed up the access and availability of these drugs were made during the session. For instance, Sanchez-Fierro indicated that regional and hospital assessments should be centralized once a drug is approved at national level. Additionally, the Cohesion Fund should include an epigraph to finance the treatment of Rare Diseases.

Other key points were highlighted during the session: Dr. Blázquez indicated that the Government funds 70% of the Orphan Drugs. In 2010, 2,5% of the Pharmaceutical Budget was related to Orphan Drugs. In 2015, the Ministry of Health plans to invest €1,7 million to implement the national strategy. Despite there is little return on investment on Orphan Drugs (5 to 6%, according to Ms. Serrano), there has been a compassionate use prior to market authorization for most Orphan Drugs.

ilS Speaker Series is fully committed to encourage debate and generate knowledge.


On the picture, from left to right: Mr. Julio Sanchez-Fierro, VP of the Spanish Association of Healthcare Law; Ms. Mercedes Martínez,  Technical Advisor of the Ministry of Health, Social Services and Equality (MSSSI); Mr. Juan Carrión, President of the Spanish Federation of Rare Diseases (FEDER); Dr. Antonio Blázquez, Head of Department of Medicines for Human Use of the Spanish Medicines Agency (AEMPS); Dr. Francesc Palau, Director of the Rare Diseases Center at the Hospital Sant Joan de Déu (HSJD), Scientific Director of CIBERER and Senior Researcher at the Principe Felipe Research Center; Dr. Itziar Escudero, Partner of ilS; Mr. Justo Herranz, member of the Executive Committee of FEDER; Ms. Concha Serrano, Director of Institutional Relations at Amgen Coordinator of the Health Commission of ASEBIO; Dr. Regina Revilla, President of ASEBIO; Dr. Pepi Hurtado, Partner of ilS.