the 3rd national plan of the government disappoints the associations of families

The third national plan Rare Diseases 2018-2022 was unveiled yesterday by the Ministries of Health and Research. It is organized around 11 axes centered on innovation, diagnosis and treatments. But the proposals did not convince the badociation AFM-Téléthon, spokesman of the families of patients

" This plan carries an ambition: to share the innovation, diagnosis and treatment for everyone " announced Agnès Buzyn, Minister of Health and Frédérique Vidal, Minister of Higher Education, Research and Innovation. The priorities of the Plan are:

• The Reduction of Diagnostic Wandering and Stalemate by Early Detection of Diseases and Start of Treatment No Later than One Year after the 1st ^era consultation by a specialist
• A closer support of people with disabilities related to a rare disease
• A expanded prevention of rare diseases with the introduction of new neonatal screening and priority access to very high throughput sequencing platforms for the realization of certainty diagnostics
• A dynamic European supported by the driving role of France. 19659008] France, leader in the fight against rare diseases

  On this last point, the government wishes to recall the " French leadership in the fight against rare diseases including the creation of n of 23 health care sectors relying on 387 reference centers and 1800 centers of competence for global and close monitoring of sick people "

  Research and innovation axes not ambitious enough

  L The enthusiasm and ambition of the government for this new Plan have not been shared by the AFM-Telethon, the main representative of the families of patients. The Association regrets that this plan does not involve other departments than those of Health and Research, given the " many issues facing rare diseases ".

  " The intentions are good ", underlines the AFM Telethon but" the concrete measures announced and the financial means identified seem very far from the stakes ". It recalls that 95% of rare diseases are without any curative treatment and that the research and innovation axes proposed in this Plan are not ambitious and concrete enough.

  Not enough financial means

  Finally, the financial aspect is as disappointing in the eyes of the AFM-Telethon. The government will release 4 million euros per year for research on rare diseases, while the Telethon " invests, each year, 60 to 70 million euros " in the research and development of new treatments, thanks to donations.
  The Association now counts on the Strategic Council of Health Industries, to be held on July 10, for " finally take the necessary measures to allow France to continue to play a major role in therapeutic innovation and French patients to have access to advanced therapy drugs at a fair price under control "

  Created on 05 July 2018

  Sources:

  – Press release of the Ministries of Education Health and Research, 4 July 2018

  – AFM-Telethon Press Release, 4 July 2018