Hello - I'm a newcomer to this site and very glad to have found it.
My husband, who is now 57, was diagnosed with psoriatic arthritis in his mid-30s. He went through several courses of treatment, but six years ago his symptoms worsened and in 2010 he was put on Humira (adalimubab), which has worked extremely well.
He is now nearing retirement (within five to seven years), and we are seriously considering relocating to the UK. (I'm a dual US/UK national; he's American, but as my husband he would be able to obtain indefinite residency or, more likely, UK citizenship.
One major concern we have, however, is about the ease (or otherwise) of obtaining adalimubab on the NHS. From reading through discussion threads amongst UK-based patients, I have gotten the impression that access to this (very expensive) drug can be difficult to arrange, and that it sometimes comes down to a "postcode lottery" in terms of what the local NHS physicians are able to provide.
I'm not at all sure how to gain access to relevant information. We very much want to relocate (most likely to Devon or Dorset or Oxfordshire), but we simply cannot do so if his access to medication would be compromised by our move. As this relocation is still a ways in the future, I realize that any information we receive now could prove irrelevant in five years' time. Nonetheless, we want to begin gathering relevant facts now.
I'd be very grateful for any suggestions anyone on this site can provide. Thank you for being here.
Hi Nell, adalimumab (Humira) is approved by NICE which means that everyone eligible to be prescribed the drug is entitled to for it to be funded by their health authority. It is also the cheapest biologic here in the UK so is usually the one that gets offered first.
My advice would be not to sweat this. Spend your time researching rheumatologists in the areas you may settle in (or within reasonable travelling distance) so you have his care transferred between his current medical team and a new UK rheumatologist as seamlessly as possible. Also bear in mind that the NHS constitution allows any patient to be treated anywhere in the UK by a specialist in their disease .... there is a specialist PsA centre at the RNHRD in Bath which is closest to the areas you mention.
If you'd like to join the UK group here 'Cuppa House' where we post UK and NHS/NICE information you're welcome so apply and one of the mods will let you in.
Obviously this is all some way in the future and guidelines or his treatment may change by then but hopefully we can keep you updated and support you when the time comes.
Thank you so much for this - that's really reassuring and very helpful.
Jules G said:
Hi Nell, adalimumab (Humira) is approved by NICE which means that everyone eligible to be prescribed the drug is entitled to for it to be funded by their health authority. It is also the cheapest biologic here in the UK so is usually the one that gets offered first.
My advice would be not to sweat this. Spend your time researching rheumatologists in the areas you may settle in (or within reasonable travelling distance) so you have his care transferred between his current medical team and a new UK rheumatologist as seamlessly as possible. Also bear in mind that the NHS constitution allows any patient to be treated anywhere in the UK by a specialist in their disease .... there is a specialist PsA centre at the RNHRD in Bath which is closest to the areas you mention.
If you'd like to join the UK group here 'Cuppa House' where we post UK and NHS/NICE information you're welcome so apply and one of the mods will let you in.
Obviously this is all some way in the future and guidelines or his treatment may change by then but hopefully we can keep you updated and support you when the time comes.
I just want to say how tragic it is that anyone cannot have access to treat their health conditions. I learned how expensive this class of drugs was after diagnosis and believe that many patients that are treated for chronic pain syndrome may have a disease that would help them so much but likely cannot afford it. I live in U.S. And my insurance costs me 6,000 annually and my co pay for remicade is $800 every 6 weeks. That does not include my portion of the cost to have the infusion. The drug companies spend millions advertising these medications…imagine if they saved that and reduced the cost ??? I hope you are able to get the medication and enjoy retirement!
I agree that research, preparation and, if necessary, determination, will almost certainly ensure continuity of treatment. However we are (constantly) thinking of moving to another part of the UK and so this is an issue that concerns me too. My first rheumatologist wouldn't consider biologics though I met the criteria and then some. And when the current one put me forward for Humira, approval wasn't considered a done deal until it was actually in the bag.
My fear is that were I to see a new rheumatologist now, one for whom budgets were paramount, they could say that I don't meet the criteria anymore because Humira has dealt with the all-important swollen joints and so on. That may be the worst case scenario, and it sounds ridiculous, but from past experience I know it could happen. So what I'd do if I did change rheumatologists, and what your husband could do, is to get a private appointment at one of the specialist centres as soon as possible. From what I've heard I'd trust their rheumatologists to take the whole picture into account. There's then the option of continuing at one of these hospitals as an NHS patient or going armed with their recommendations to a different NHS rheumatologist.
I just want to say how tragic it is that anyone cannot have access to treat their health conditions. I learned how expensive this class of drugs was after diagnosis and believe that many patients that are treated for chronic pain syndrome may have a disease that would help them so much but likely cannot afford it. I live in U.S. And my insurance costs me 6,000 annually and my co pay for remicade is $800 every 6 weeks. That does not include my portion of the cost to have the infusion. The drug companies spend millions advertising these medications...imagine if they saved that and reduced the cost ??? I hope you are able to get the medication and enjoy retirement!