Question 5973 — diseases

Summary

Mr. Thomas Lam questions the Minister to the Minister of Labor, Health, Solidarity and Families, responsible for health and access to care, on research on amyotrophic lateral sclerosis (ALS) and the Government's support for French biotechs. With more than 500,000 cases worldwide, including 2,000 new ones per year in France, this disease, whose life expectancy is between 3 and 5 years, is an orphan. None No effective treatment has been found to date to cure it. However, ALS research is currently promising. For the first time, four French biotech companies have developed molecules that could transform the future of this disease. These advances raise immense hope for patients and their families, but are now seriously threatened. Due to lack of sufficient financing, these companies are in the inability to continue their phase 2 clinical trials. Deprived of support, these biotechs have no other choice but to leave France to conduct their trials, joining foreign countries where the support systems are more flexible and more favorable. Access to treatment is another major obstacle. ALS is a devastating disease where every day lost means an irreversible loss of opportunity. However, the regulatory framework requires extremely long clinical trials, incompatible with the urgency of the situation. It is imperative that France adapts its procedures and allows early access to molecules having shown encouraging results in phase 2, accompanied by systematic collection of real-life data. This model, already in place for other serious illnesses, would make it possible to respond to a dual challenge: offering treatments to patients who do not have unable to integrate the trials and reduce costs for biotechs, which today struggle to finance long and complex studies. In order to relieve biotechs of these high costs, deferring payment of additional hospital costs to biotechs at the end of their clinical studies (an amount that can be guaranteed by the State) would be another possible avenue. Beyond these issues, SLA represents a unique study model, whose advances will benefit all neurodegenerative diseases, including Alzheimer's and Parkinson's. It is urgent that France takes stock of this issue and adopts a proactive and ambitious approach to support research and innovation in this area. He therefore asks him what concrete actions he intends to take to facilitate access to financing and clinical trials for biotechs.

Machine translation from French. The official text remains authoritative.

Timeline

No timeline events have been ingested for this record yet.

Votes

No vote records are attached yet.

Versions

No version snapshots stored. Document URLs remain at the source.

Documents

No documents linked.

Sponsors

No sponsors or actors listed by the source.

Related records

No cross-record relationships stored yet.