Rheumatoid Arthritis

[Porth]

Somewhat of a long shot but I (we) wondered if anyone can help?  Briefly my wife has suffered from this illness for over twenty eight years.  Over the last year or so we have seen in the UK a range of drugs called generically anti-TNF.  This are of US origin and basically one self-injects on a bi-weekly basis.  These have been funded by our Primary Care Trust at a cost of about £10K per annum.

We also own a house in (50) and so want to move permanently.  However the drug has revolutionised my wife's life so much so that she now does not need to see her consultant save for once a year.

If we move then we lose the support of the Primary Care Trust and whilst the specialist hospital will continue to see my wife say on a yearly basis we do not have the drug at our disposal.

Does anyone please have any idea on two fronts of one how can one identify if this drug is available in France and (2) based upon the cost would the top up insurance pay for its costs. 

If the answer to either of the above is no then we will remain in the UK but spend longer holidays in France and where we can take the drug with us but under strict temperature controlled conditions.

We do hope someone can help

 

kind regards and seasons compliments to everyone.

We

 

[barnabebear]

Hi Porth,

sorry I can't help with your question, but just to say that my mother-in-law has just started this course funded by her local authority in the UK, and has shown an improvement after 3 months, although with a few side effects. If this is to be such a wonder drug even though highly exspensive, I will watch to see if anyone replies as to if it would be available in France, where we are living at the moment. Good luck.

Barnabebear.

[BJSLIV]

A quick search on French Google (anti-TNF arthrite prix) reveals plenty of references, so it clearly is available in France, and at much the same price . A further testimonial in French

Re spondylarthrite

Tout ça pour en venir aux anti-TNF que mon médecin m'a préscrit début septembre. Ce "super anti-inflammatoire" s'appelle Enbrel dans mon cas et s'administre par voie sous cutanée deux fois par semaine, soi-même. Il se conserve au réfrigérateur (+2C +8C) donc pas facile pour les voyages, et vaut très cher (1206 EUR par mois).
Démoralisé par l'avancée de la maladie et la lourdeur des traitement que je prenais, je ne m'attendais pas à un résultat aussi spéctaculaire. Deux jours après la première injection je ne ressentais prèsque plus aucune douleur et les articulations enflées étaient "vidées". En voyant ça j'ai cru pleurer tellement je n'y croyais plus. Je redécouvre la souplesse et la démarche élegante que j'avais oublié depuis tant d'années, je me sens léger, je dors bien, sans parler du moral.
Je suis ce traitement depuis deux mois seulement et prends en même temps un AINS et de la cortisone que je réduis progressivement. La numération sanguine est enfin normale (plus d'inflammation) et la tolérance au traitement est bonne pour l'instant.
Je me dis que c'est trop beau, qu'il y a sûrement un revers à la médaille, des effets secondaires peut-être... , j'ai une ordonnance pour trois mois, je verrai au
terme que faire avec mon medecin.
Pour l'instant c'est le jour et la nuit, et j'en profite.

Sounds like good stuff!

[Porth]

thanks for the response(s)

So it looks as though it is available next question is I suppose how do we get it and having obtained it who pays for us.

 

RA is a recognised chronic illness I wonder as it is allocated to my wife on a named patient basis we can get it in France on a reciprocal basis but I do think that payment is the problem.

thanks again

[Owen]

Hello,

I should say straightaway that I am not medically qualified! I simply know a bit about the French health system.

You have not mentioned the medication but I suspect it may be Enbrel/Etanercept (at least that is what it is called in France). I say this because the cost at 1200 Euros a month, for a twice weekly dose, is similar to that in the UK.

Rheumatoid Arthritis is one of the conditions that can be covered 100% (provided that it is sufficiently severe) by CPAM, including even this expensive medication. But this 100% cover can only be ascertained once you have been examined in France and of course you are in the French system.

Regards

Peter Owen

[email protected]

[Porth]

Thanks again for such supportive information.  It used to be Enbrel but my wife had a severe side attack from it and has now been changed to Humiral which we presume is available in France?

Problem then seems to be the $64000 question in that the drug for my wife has been supported here in the UK and funding is in place.

We then go to France on the basis that whilst RA is a well-recognised disease and my wife has had it for over 28 years we have to subject ourselves to continuing investigations in France to prove that my wife has both RA and that the new drug has improved her life.

As it is she (my wife) will lose her various allowances when and if we move to France and the logic seemingly is 'if it is not broken do not mend it' so it could be we are in France then the system will not support the drug and yet we have then burnt our bridges in the UK as well.

Looks as though some work is still needed and more investigations are the order of the day.

Meanwhile thanks to everyone for their responses and again best wishes for the holiday season.:

[cheryl]

If your wife is receiving Incapacity Benefit, then presumably she would be entitled to an E121 if you moved to France. Would it be worth checking with Newcastle as to whether her medication would be covered 100% by the E121?

[Owen]

Hello,

Your posting is a complete red herring. Issue of E121 has no bearing whatsoever on whether someone receives 100% cover. It is the condition, or in many cases the severity of it, which determines whether 100% cover is granted. Any opinion of newcastle would be irrelevant. Only a practitioner in France and confirmation by CPAM can achieve 100% cover for the condition.

Regards

Peter Owen

[email protected]

[cheryl]

I only made this suggestion as someone that I know who is receiving Incapacity Benefit and has an E121 has had 100% cover for their condition since living in France. They have not had to visit a French doctor for confirmation of the severity of their condition.

I had thought that with an E121 the costs were covered by the UK - is that incorrect?