In the last two years the issue on biologics and biosimilars has received a lot of attention from the medical, regulatory and patient community. Licensing rights of biological medicines used in the treatment not only of IBD but also other autoimmune modulated diseases are coming to an end and biosimilars medicines are being developed to compete with original biological treatment options. In various countries in the EU and elsewhere biosimilars have already entered the market.
EFCCA understands the market forces that are in place right now and welcomes the idea and necessity of affordable treatment options to be developed. However we believe that under no circumstances should patient safety be compromised. Within this framework and as part of our work programme, since 2015 we have organized a series of events around patient safety and information sharing as well as targeted training sessions to enhance knowledge and skills for people with IBD.
4-5 May 2017, regional workshop
EFCCA, together with the Global Alliance for Patient Access (GAfPA), organised a Patient Access and Advocacy workshop, which took place in Munich, Germany on 4-5 May and brought together a group of around 10-15 participants from IBD patient associations and related immune modulated disease groups to discuss issues surrounding the access to biologics/biosimilars in the countries represented during the workshop. For more information please read the article on page 6 of the EFCCA Magazine (Issue 2-2017).
15 November 2016: Patient Safety Conference - European Parliament
The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA), the Global Alliance for Patient Access (GAfPA) and representatives from several immunomodulated disease groups gathered in the European Parliament for an open debate with Members of the European Parliament about patient safety and patient rights especially as it pertains to biosimilars and biologic treatments.
Follow the link below for more info, full press release, and agenda
In late 2014 we launched a survey entitled BAB – Biologics and Biosimilars to assess patients knowledge about biosimilars and to find out to what extent patients are aware of the issues involved around biosimilars medicines. The scientific coordinator of the BAB survey is Professor Laurent Peyrin- Biroulet - from the Department of Hepato-Gastroenterology CHU in Nancy, France.
Read more about the survey: http://www.efcca.org/en/projects/patient-safety-biologics-and-biosimilars
4-6 February 2016, Empowering Patients
From 4-6 February 2016 EFCCA (the European Federation of Crohn ́s and Ulcerative Colitis Associations) together with GAfPA (Global Alliance for Patient Access) organised an advocacy workshop on patient safety which took place in Barcelona and gathered over 60 patient representatives from a wide range of immune modulate disease groups. More info page 5 of the EFCCA Magazine (issue 2/2016)
Read Executive Summary