Associated Chronics
A group of chronic disease affected people’s associations
A quite recent history
The organisation of a conference on October 10th 2005 on "Chronic Progressive Pathologies and Job Keeping" made it possible for AIDES, Jeunes Solidarité Cancer, Vaincre la Mucoviscidose and partners in the world of work (Cinergie and Fédération des Services CFDT) to get together around professional integration related issues.
This work allowed to bring forward common practical expectations and solutions that now have to be promoted. At the closing of the conference, the chairmen of AIDES, JSC and Vaincre la Mucoviscidose emitted the wish to go further and proposed a coordinated effort to carry the expectations and demands of diseased people who are affected by chronic pathologies.
If the group was born from this first impulse, other associations have joined it to reflect on issues much wider than just professional integration but cover the whole spectrum of chronic disease issues, which must be identified, brought forward and resolved as a whole.
Origin and purpose of the working group
Many studies show that the number of people living with a chronic disease is growing within the French population, like in all economically developed countries. Two main reasons can explain this:
- The improvement of treatments and medical innovations make it possible to keep on living without much change in a person’s condition (and the disease is often detected earlier).
- An extended lifespan.
If the number of long term condition cases covered by a health insurance is taken as a criteria to assess the number of people affected by a chronic pathology: 8 million individuals are concerned. These citizens find it very difficult to have their place in society recognised, in addition to specific difficulties they are already facing in relation to their chronic disease.
Two obstacles are clearly identified:
- One’s ability to tell him/herself (or admit) he/she is living with a chronic disease;
- People’s ability to accept one’s chronic disease.
The people who eventually associated themselves expressed their expectations, and there has no doubt been improvements in diseased people’ ability to speak out, especially in the cases of HIV/Aids and cancer. It is essential that each association expresses itself in its own field for diseased people and their relatives to be best defended, in accordance to each pathology’s specificities.
However, there are collective expectations which are common to all pathologies and are not sufficiently brought forward. This poses a problem when it comes to implementing steps that respond to these needs. It is this role as a common spokesperson and advocate that the Associated Chronics want to play when they work together.
The group’s practical goals
- To inform and raise the awareness of public authorities and public opinion as a whole about the difficulties faced by people living with a chronic disease.
- To participate in a common reflection on the quality of life of diseased people who are affected by a chronic disease.
- To monitor actions in the community and health field aimed at the improvement of chronic disease affected people’s health care and quality of life.
- To bring forward demands and proposals to public authorities and national institutions.
Represented associations
AIDES
FNAIR
Vaincre la Mucoviscidose
NAFSEP
Jeunes Solidarité Cancer
Europa Donna
Criteria for joining the group
The association must formalise its demand in a letter.
It must be an association of adult chronic disease affected persons in working age.
