CUTIS LAXA INTERNATIONALE
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Living with a rare and orphan disease, whether it is genetic or not, does not only mean being confronted with medical tests, hospitalisations, physical and mental pains.
Unfortunately it sometimes also means being outlawed by society, having no place in it, not having the same rights as anyone, having a social disability added to the disorder itself.
In France, several laws concern rare disorders. You will find here below the summary of some of them, but you can also go and visit the official website gathering all needed information on disability : www.handicap.gouv.fr which gathers all the official texts regarding handicap. You can also, for any and all question regarding legal and social issues linked to health, call the freetoll (from France) number of the French National Interassociative Committee on Health (CISS) : Health Info Rights : 0 810 004 333. Specialised professionnals will inform and guide you. This service is also availiable on the CISS website : http://leciss.org. There is also a third source of information on the internet : a new website dedicated to Disability set on line by Retirement and Contingency Institutions: http://www.ocirp.fr. It tackles many issues : daily life, means, laws and taxes, employment and training, education, health,etc.
Concerning Social Rights, in France, one must know that Cutis Laxa is part of the « Hors Liste » diseases for which 100% of the expenses are reimbursed by the public Health Insurance.
In Addition, it is also possible to ask the CDES ( Local Committee for Specialised Education) for ASE (Allowance for Special Education ). It can be asked for any suffering child up to the age of 20. After 20, the COTOREP ( Technical Committe for Orientation and Redeployment), takes the sufferer in charge and studies his/her rights as well as the possible allowances, regarding their level of disability due to the disorder.
The law on equality of rights and chances, participation and citizenship of disabled persons
After a lengthy parliamentary work, thousands of amendments and compromises, this law was voted on 11th February. Unfortunately it does not integrate the issues used for a long time by the OMS and which refer to the interaction between a person’s state of health, their life project and environmental context. Nevertheless this law improves several existing systems, even if it is not a revolution : Improvement to resources for some of the disabled, improvement to school access within the principle of going to the nearest school, strengthening of the access obligations for public transport and services, and a few improvements to ease employment for the disabled. But, the real novelties in the law lie in the right to compensation and the establishment of local resource centres for disabled persons :
v The right to compensation is written as follows in the law : “The disabled person has the right to get compensation for the consequences of their handicap whatever the origin and the nature of the deficiency , their age and their lifestyle”. In concrete terms it means fully taking in consideration the person’s own life project, a personalised and global evaluation of the disability in its context, the real end to categorisations and scales, and leaving behind the logic of social help, whilst providing total cover of needs. As Mrs Tiennot-Herment, Chair of the AFM said : « In order to make the right to compensation become a reality, one must understand that, beyond the text of the law, habits, administrative reflexes and culture will have to change.»
v Local resource centres for the disabled whose missions are as follows : Inform and welcome disabled people, help to formulate life projects, evaluate needs, decide upon and fund personal compensation plans, help to implement decisions and relevant support services, coordinate health and medico-social actions. They will house the Commission for the Rights and Independence of the Disabled People (ex-COTOREP et CDES) who will grant allowances.
These new clauses are positive and fit into the associations’ expectations. Nevertheless we must stay aware of the publications of the enforcement decrees and their real implementation: What human resources will really be set up by Local Councils to allow the local centres to work ? How to guarantee acceptable delays in the treatment of each case ? How to change the “Social help culture” of social workers? How to guarantee real equality of handling throughout the country, as some Local Councils are thinking about the creation of “virtual, rather than real, resource centres” ? (The full text of the law can be read on Alliance Maladies Rares website: www.alliance-maladies-rares.org)
The National Plan for Rare Disorders (2005-2008)
The French Government set up a « National Action Plan for Rare Disorders » in 2005. It added to its objectives to take into account people suffering from rare disorders. Disorders are rare but sufferers are numerous. A disorder is rare when less than one person among 2,000 is suffering from it (European rate). That is less than 30,000 people for one single disorder in France. Almost 7,000 rare disorders have been identified up to now and each week 5 new pathologies are described worldwide, 80 % of them are genetic origin. 6 to 8 % of the world population is concerned, more or less, by these disorders, that is more than 3 million people in France (27 millions in Europe). Thus, it was high time that Society as a whole should take these citizens into account. The National Plan for Rare Disorders is based on 10 strategic axes :
1. Increasing our knowledge of the epidemiology of rare disorders ;
2. Recognising the specificity of rare disorders ;
3. Developing information ( sufferers, health professionals and public) ;
4. Training professionals to identify them better ;
5. Organising screening and access to diagnostic tests ;
6. Improving access to healthcare and the quality of social welfare ;
7. Carrying on with efforts developing orphan drugs ;
8. Answering specific needs for support and developing support for sufferers’ associations ;
9. Promoting research and innovation, especially in regards to treatments ;
10. Developing national and European partnerships.
In answer to some of these axes, measures have already been taken:
· “Centres of Reference” have been established. They are Expert Centres for one or several disorders. They will welcome sufferers desperately searching for a diagnosis, with all costs full covered, wherever the Centre is located or where the sufferer lives. By the end of 2005 the French Ministery of Health had approved 67 Centres. There should be about 100 of them by the end of 2006. Today there is a main Centre for Cutis Laxa, in Paris :
Centre de référence pour les maladies génétiques à expression cutanée : Coordonateur : Pr Christine BODEMER, Hôpital Necker - Enfants Malades, Assistance Publique - Hôpitaux de Paris - Service de Dermatologie – 149 rue de Sèvres – 75743 Paris Cédex 15
But Bordeaux’s Centre can also be consulted:
Centre de référence des maladies rares de la peau :Regroupant le centre du Pr Alain TAÏEB, service de dermatologie B, centre hospitalier universitaire de Bordeaux et le centre du Pr Alain HOVNANIAN, services de génétique médicale et de dermatologie, centre hospitalier universitaire de Toulouse. Coordonnateur : Pr Alain TAÏEB - Service de Dermatologie B - C H U de Bordeaux - Place Amélie Raba-Léon - 33076 Bordeaux Cédex - Tel : 05 56 79 59 40
· 4 years assured funding for the Clinical Research Program in Hospitals (PHRC). In 2005 rare disorders became a priority main aim of the PHRC. 84 projects were proposed on this subject and 24 among them were funded, for a total amount of € 6,658 millions for 3 years ( from € 100,000 to 500,000 per project). This is a bit more than what was drafted in the National Plan for Rare Disorders. Rare Disorders remains a priority aim of the PHRC in 2006.
At last, the Implement Decree concerning them was published in November 2005. It finally allows their establishment in Regions. They contribute in defining local aims for Public Health and in evaluating the action plans on several years which constitute the Local Plan of Public Health. They consist of 60 to 120 members divided in 6 bodies, of which one for representatives of sufferers and users of the health system. It is important that associations’ representatives take part in them to convince local council that rare disorders must be included in the Local Plans for Public Health.
All together 100 millions Euros should be invested for rare disorders, in France, over 4 years.
· Medicinal Products for children…A European law to answer an urgent public health need : « It is an important step for all European children ! ». After five years of efforts lobbying the administration of each country as well as the European Commission and the pharmaceutical industry, Eurordis publicly rejoiced at the adoption at its first reading by the European Parliament, on the 7th September 2005, of the European law on medicinal products for paediatric use. Relief tinged with pride, shared with all those who involved themselves in this active lobby : based on the model of regulation of orphan medicinal products, this law allows us hope for a quick development of medicinal products for children, urged on by sufferers’ representatives who will take part in the Paediatric Committee included in this legal instrument. The European Commission, at its meeting on the 17th November, presented a new proposition modified after its work of evaluation of parliament amendments. 18 amendments were totally or partially accepted. They mostly concern clinical trials and the regulation under which they would be allowed. Clarifications were also brought in regarding the therapeutic needs and funding for research on medicinal products for paediatric use which are not licensed or covered by an additional certificate of protection. The Commission rejected 34 amendments mostly concerning the responsibility of the Paediatric Committee, which the Commission wishes to remain only scientific. The creation of a European logo for medicinal products for paediatric use is accepted. (sources : Eurordis Newsletter November and Orphanews December 2005)
· 7th European Program for Research (2007 - 2013) : Favourable developments for rare disorders : On 12th and 13th April 2005, the European Research Department invited coordinators of research projects on rare disorders which they had funded, including two members of Eurordis, to present their comments and criticisms. Betond a constructive spirit, this was a real convergence of ideas which enlightened the European civil servants dealing with Health and Research. (source : Newsletter Eurordis – July 2005)
The review of Bioethic Laws lasted more than 2 years long. The final text was voted in August 2004. Even if some Decrees of Implementation were still not published by the end of 2005, and especially those concerning the establishment of the Biomedicine Agency, the vote in 2004 allowed for 14 stem cells lines import licences to be delivered in 2005 to researchers to go on with their work. On 6th February 2006, the Decree of Implementation authorising embryo and embryo stem cell research was published. The Citizen Panel, composed with sufferers and sufferers’ parents who worked throughout the review to get sufferers’ voice and wishes heard, thus does not exist anymore. Nevertheless, some of its members are still working on Ethics in the Alliance Maladies Rares working group.
Allowance for Special Education (ASE) in France
The ASE was introduced in the statutes books by the Law of 30th June 1975 regarding Social and Medico-Social Institutions, for the benefit of the disabled people under the age of 20. Its third review was concluded on the 29th March 2002. The new provisions increase the number of supplements from 3 to 6, in order to adapt more precisely the amount of the allowance given to families, to reduce the variances observed and to harmonise the varying practices of the CDES (Local Committees for Specialised Education). Even if the review seems to be favourable in most cases, unfortunately red tape is increasing. (the amounts and expenses shown below are calculated monthly ).
Basic ASE : 113,15 € : No means testing of income, no means testing of additional expenses
1er Supplement : 84,86 € : Additional expenses equal to or over € 198,01 .
2ème Supplement : 229,83 € : either Reduction of one of the parents’ professional activity (at least 20% of full time job) or employment of a carer for at least 8 hours per week, or Additional expenses equal to or more than € 342,98 .
3ème Supplement : 325,30 € : : either Reduction of one of the parents’ activity (at least 50% of full time) or employment of a carer for at least 20 hours per week. Alternatively either Reduction of one of the parents’ activity (at least 20% of full time) or employment of a carer for least 8 hours per week and Expenses equal to or more than € 208,62. Alternatively Expenses equal to or more than € 438,45 .
4ème Supplement : 504,11 € : either Stoppage of one of the parents activity or employment of a carer full time. Alternatively either Reduction of one of the parents’ activity (at least 50% of full time) or employment of a care person at least 20 hours per week and Expenses equal to or more than € 291,96. Alternatively either Reduction of one of the parents’ activity (at least 20% of full time) or employment of a carer for least 8 hours per week and Expenses equal to or more than € 387,43. Alternatively Expenses equal to or more than € 617,26 .
5ème Supplement : 644,28 € : Stoppage of one of the parents activity or employment of a carer full time and Expenses equal to or more than € 253,31 .
6ème Supplement : 945,87 € : Stoppage of one of the parents activity or employment of a carer full time and permanent constraints of care and supervision for the family.
ASE and its supplements are given monthly for a year, against receipt of certified proof of reduction of employment and / or additional expenses. Thus you must keep safe all documents which justify the situation because, every year, you will have to fill in a new form (4 pages long) sent to the Child Benefit Office which forwards it to the CDES. The medical certificate (in a sealed envelope) which accompanies the form must be completed by a professional . Feel free to argue and add a letter explaining the reality of the situation
v Aeras Convention (Insurance and Loans with an Increased Health Risk)
From 1st January 2007 onwards, this new convention will replace the little known and deeply criticised Belorgey Convention. It is the result of serious discussions between insurers, banks and associations, set up by request of the French President. These discussions have generated some progress :
1. Awareness raising work so that the Aeras Convention’s existence and its statutes are known ;
2. The conditions of age, amount and length of the loan will be softened ;
3. Disability should be covered under certain conditions ;
4. A mutual insurance mechanism will allow the reduction of premiums for people on a low income ;
5. Follow-up on the implementation of the convention will be reinforced.
These principles have been inserted in the law voted on 31st January 2007 by the French Parliament and Senate.
In this context, the firm CABIP, specialised in loans insurance and mortgage, has opened on its website CREDIASSUR , an online forum on the AERASconvention. This forum, opened to everyone (candidates for insurance, policy holders, insurers, doctors, sufferers' organisations,etc) should usefully complete the Official Website of the Convention which has none.
Free Flights for Sufferers
AIR France, Aircraft Company, can accommodate Free flights for sufferers. For all necessary information you can get in touch with : Passengers Medical Service – 45 rue de Paris – 95747 Roissy CDG Cédex – Tel : 33 (0)1 41 56 79 80 – Fax : 33 (0)1 41 56 79 89