“Clinical trials are a hope for patients with rare diseases and already account for 25% of all research done in Spain”.
Farmaindustria’s CEO, Juan Yermo, participates in the conference ‘Towards a Comprehensive European Plan: Spain’s involvement with Rare Diseases’, organised by Feder in the Spanish Congress of Deputies.
“The pharmaceutical industry will continue to work with patients to give them and their associations a greater voice,” he adds.
Farmaindustria.es
Finding new drugs for rare diseases is one of the priorities of the pharmaceutical industry, which in recent years has intensified research into these pathologies. In Spain there are more than three million patients with a rare disease and the industry is increasingly involved in the whole innovation process.
“Clinical trials are a hope for patients with rare diseases and already account for 25% of all research in Spain, 91% of which is driven by the pharmaceutical industry,” stressed Farmaindustria’s CEO, Juan Yermo, at the conference Towards a Comprehensive European Plan: Spain’s involvement with Rare Diseases, organised by the Spanish Federation for Rare Diseases (Feder) at the Spanish Congress of Deputies.
The Director General of Farmaindustria also highlighted the work of pharmaceutical companies not only for patients, but also with patients, based on two reasons: “Patient associations have demanded greater decision-making capacity and pharmaceutical companies greatly appreciate the value they bring to the research process”.
Among other actions, Farmaindustria published in May 2020 a Guide of recommendations for the articulation of the participation of patients and patient associations in the pharmaceutical R&D process. A year later, with the participation of Feder, a specific document was launched in the field of paediatric clinical research, which has become a reference in Europe.
Yermo reviewed how patients have become increasingly involved in trials, from the design itself to the definition of criteria for measuring results. And he called for increased patient involvement throughout the process until the drugs reach the system: “Patient participation needs to be extended to the entire clinical research process, because where they are not, unfortunately, is in the funding stages, once they have already been authorised in Europe. No one knows the personal experience of a treatment better than the patient.
Another area for improvement is access, where Yermo has also stopped. “In Spain, only one in two of the drugs authorised for rare diseases is available through the National Health System, and the average waiting time for patients is more than two years.
In order to improve this situation, Farmaindustria has proposed a series of measures to accelerate the arrival of orphan drugs to patients, as well as a proposal for early access so that patients most in need can have access to the drugs while the funding decision is being extended.
At the European level, Farmaindustria has also called, together with the European Federation of the Pharmaceutical Industry (Efpia), for the reform of European pharmaceutical legislation to take into account the specificity of rare diseases and not to erode incentives for orphan drug research, a success story over the last 20 years.
“The pharmaceutical industry will continue to work with patients to give them and their associations a greater voice, and what better way to do this than to promote the European Action Plan on Rare Diseases and the work of the Spanish Federation for Rare Diseases,” concluded Yermo.
The conference was opened by Francia Armengol, President of the Spanish Congress of Deputies, and Juan Carrión, President of Feder and its Foundation. It was also attended by representatives from politics, the associative movement and industry.
