If someone's on Humira or Enbrel in the UK, then goes to live in an EU country, can they continue with the treatment under the NHS or a reciprocal agreement?
I've heard that the high cost of biologic drugs puts them out of reach in this situation. But is this true?
Any thoughts on this gratefully received!
I have no idea. I have been thinking myself lately that I have no "freedom of movement" due to my illness. I cannot suddenly get up and move anywhere. I need to be able to access to hospitals where I go to (looks like this "trend" will continue for some time).
It would be interesting to know how these drugs are funded elsewhere.
I didn't mean to depress you! I know what you mean .... but I reckon healthcare in many countries is great and that with a bit of planning we can still be adventurous. It's just this thing about the bios .....
That's very sweet thank you, postle2 
It is a very useful thread. No, you haven't depressed me lol xx
I don't know if we can or not Postie, I'm not even sure about our own country! I would love to move back to the country rather than live in London but am concerned I would not receive funding for my bio, enbrel, which is why we stay put. I've heard so many scary stories here about people not getting access to them that it concerns me if I were to move as I realise I am a very fortunate person in getting the right treatment at the right time.
It will be interesting to here what others have to say especially from clemmie, nmh, and barrister as I believe they lived in other countries as well as here.
georje you are so right about not even being sure about access in the UK! If we hit the jackpot and get biological drugs then continued treatment is always a big concern when we even think of moving elsewhere. I'm so grateful to my rheumy for the determined way he went about getting me on Humira.
My experience relates to france, so other countries won't be the same. For the minute I'm still a UK resident, and use NHS services but spend a lot of time in France and so will eventually change residency. With France the complication is getting into their medical system. If you're a UK pensioner it's fairly straightforward but younger than that will depend on circumstances.
Anyway, as far as drugs go it seems the norm for people to be on biologics. I went to see a rheumy to discuss and their approach is very much based on patient need and not funding - one reason perhaps why french economy is under such pressure as they have yet to adjust their services to the money they have. And RA is a long term condition so treatment is 100% funded. For other medical stuff you have to pay a percentage, and most people have an insurance scheme that covers that.
Remember that people have RA all over the world, and are treated for it. So don't let it put you off any plans you might have. Adds a complication but there are usually ways round them. I'd perhaps avoid Greece as their health service sounds in dire straits and great lack of drugs all round. But apart from that....
The limiting factor all over the EU to me is there is a widespread lack of rheumies, rather than difficulties with one country or another. I can't do what I used to, which is pick up a toothbrush and move without planning anything, so that's annoying. But then as you get older you get more baggage in all sorts of way that slow you down, as well as RA.
Thanks helixhelix. The question isn't about my own plans, unfortunately. (Or fortunately, depending on how you look at it!)
So if someone remains a UK national they could in theory stay on current treatment and go back for rheumy appointments? That might work.
No. The NHS is residence based so you have to remain resident in UK. There are various 'tests of residency' but the key one is being here for over 183 days a year. So I still work part time in UK, and am here for the 6 months needed a year, but go to France the rest of the time.
Probably next year I'll go the other way and be mainly in France with trips back to UK to work - but will need to move to French healthcare as will no longer be entitled to NHS care. Since I think my UK rheumy is brilliant I'm in no rush to switch (apart from preferring to o be in france that is!)
Ah. I'm beginning to get my head round this, thanks for that. And as I realised later, there would very likely be all sorts of problems getting hold of the drug anyway, given that it's usually delivered.
Only thing to do is go and spend a few weeks somewhere and investigate fully as you can I suppose. As helix says lots can slow us down as we age apart from RA. The reason to stay or go should probably be about overall quality of life rather than remaining on one drug - which may or may not be superceded by others anyhow. Although I can also see that if one drug gave me back some of my quality of life I'd be tempted to hold on tight. Unfortunately for me this hasn't happened yet so I still have a long list and much research to do before 100% deciding where and when to be toothbrush grabbing.
Thanks Twitchy. Thing is, it's such a kerfuffle getting on biologics that having achieved that it's potentially disastrous to stop 'em. The safest course of action seems to stay with the drug that helps because even if you stop the drug, go abroad for a while and then come back, you could find that things have changed in terms of criteria or a different rheumy's assessment of your disease. I do agree that overall quality of life is the main thing.
I think overall quality of life probably has to include being able to remain on a drug that works Postle - I just feel we can become overky focussed on one aspect of our lives which works to the detriment of the bigger picture. So we might end up sacrificing other stuff that would benefit us far more broadly in the long term. But I can see that it's a tough 'un for many people on Bios. Tx
I knew all the in's & out's when living in Spain but it may have changed since then & I don't now where you're planning to live so rather than give duff info starting by reading this may help you if you haven't read it already! nhs.uk/NHSEngland/Healthcar....
Medical Tourists have caused all sorts of problems & the UK Government has been caught out in many ways with so called reciprocal agreements not being adhered to. I know Spain got in an awful knot with the UK (UK not paying Spain that is, though Spain were partially to blame in being tardy with claiming monies due) with what was due not being paid so if you can check for the country you're considering living in & their specific stipulations/arrangements you should find that more reliable. One thing to consider if you intend working & paying into the adopted country's system is some, such as Spain, it's necessary to pay a percentage of the cost of the drugs prescribed, there's no free healthcare any more (excepting pregnant women & children I think), not even those retired or on a pension. In certain circumstances some prescription costs are capped but not all by any means & it can depend very much on how much is earnt & declared & your status. Percentages are different depending on circumstances but it could work out expensive with meds such as Enbrel & Humira. I'm not even sure of the situation re residency which while we lived there was necessary to be employed legally in Spain. The year before we left there was talk of only nationals being issued with & carrying the Residencia ID Card but there must be some other form of legality to replace it for those wishing to work & be considered for national heathcare. Whilst there we retained British Citizenship but were granted Residencia for employment & tax reasons, both paid in Spain & tax exempt for the UK having retained property here & income from those.
Another option of course is private medical insurance, which we had to take out whilst my h found paid work, but again cost could be prohibitive depending on who it's taken out with & whether or not existing health conditions are covered. This you'd have to check as neither of us had any of note when we took ours out so it was very reasonable but now I dread to think of the restrictions! Again, things may have changed & allowances made or put in place since we lived there so don't quote me if it is Spain you're considering to move to!
Obviously I can't speak for any other EU member country but I & my immediate family can't praise the Spanish healthcare system enough, from GP's & Practice Nurses right through to hospital staff & Surgeons. Patients are encouraged to be proactive & the needs of the patient overrides the cost of drugs. Whatever is considered necessary & best for your particular needs is prescribed without consideration of cost. But, again, this could be prohibitive with yours. I don't know if there are any special considerations for the more expensive meds. Again this link is relative to Spain but you may find a Gov website relating to where you're considering planning to live gov.uk/healthcare-in-spain.
Maybe if anyone else is living in the country of choice sees this they'll be able to give personal information. One thing I would do though is ensure everthing is in place re healthcare before you make the final decision on planning to move.
Well I've whittered without telling you an awful lot Christina, sorry for that but you gather it's so important to do proper research & have the correct info. x
Thank you so much. As I mentioned above, this question isn't about me. Though I kind of fancy Spain after reading your reply! Great links, I'll go read!
No probs. Recommend they do their homework, many don't & fall foul of easily avoided problems if only they'd made sure everything was in place before making the move. My h could give you many examples of expats who didn't dot the i' s & cross the t's & then had to sell up & come back to the UK, many having sold their homes in the UK & struggled once back. Many make a good life out there of course, ourselves included, but as he says some "leave their brains at the airport".
Yep, I totally agree with you about the need for really thorough research and preparation. The disease / treatment factors just add to the list.
As far as I was aware,"reciprocal agreements"only cover emergency treatment,and not ongoing treatment. As others have suggested what matters is not your nationality, but your residency status.
Thank you earthwitch. I reckon I've got much more of a handle on this now than if I'd looked it up.
Thanks all!
And pensioners...
Reading the papers this morning it reminded me that the other thing to bear in mind is if we come out of the EU then it will all probably change, and we'll end up with no rights at all, presumably not even the EIII emergency treatment.
And that certainly would impact on freedom of movement for 'people like us' .....
Maybe not. After all the UK has reciprocal arrangements with non-EU countries already - like Australia and New Zealand.
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