Lupus and Comorbidities by Professor Loic Guillevin, Hospital Cochin, Centre de Reference des Maladies Autoimmunes Systemiques Rares, Hospital Cochin, Paris
Prof Guillevin expressed his gratitude for the invitation to talk to us about the organization of rare disease in France. Reference centres about rare disease were organized and the network was built based on the fact that there is a huge amount of rare diseases and about two million people in France who are affected by them.
1st National Plan for Rare Diseases (2005-2008) was organized in cooperation with the Ministry of France. The objectives of the plan were the following:
• Patient care - make a diagnosis and explain that diagnosis to the patient
• Network and coordination of rare disease centres in France and overall Europe
• Organize clinical research in order to create a database of patients diagnosed with a rare disease and study the complexity of the disease
• Organize educational programs
He also spoke about the reimbursement of treatment in France. The social system allows all the patients with rare disease and/or chronic disease to be fully reimbursed. Before any drug is prescribed the drug needs to be approved. There are a lot of experiments with drugs and according to the European legislations and regulations it may take up to five year for a drug to be approved. One of the missions of the people involved in this plan was to facilitate the registration and accelerate the approval of this drug. However, not every drug should be approved.
The second level of the plan was to organize the so called Competency Centres which work together with the referral centres – they participate in trials and organize meetings that help the patients understand the disease. Unfortunately, these centres have limited funding.
Clinical trials in rare disease are funded by the ministry of health. Unfortunately, due to the financial crisis there are less resources for clinical trials in 2013 compared to 2012.The first rare disease plan generated major advances for the 3 million French people affected by a rare disease (which is often serious, progressive, invalidating and lethal). Thanks to this plan, France is considered as a model for public health policy in Europe and in the world.
2nd National Plan for Rare Diseases (2011-2014)
• To develop research on rare diseases and to empower European and International cooperation through Orphaned – a reference portal for information on rare diseases
• The creation of the “Foundation maladies rares”
• To create and improve the network from the reference and competency centres
Currently there is a discussion whether to create a third plan which will be a repetition of the first one and it will be evaluated whether there is a demand for new centres for rare diseases.
There is a link between the doctor and the patient, namely one common goal! If the disease is detected early, the treatment and education also begins earlier, and therefor there is a higher rate of survival!