Hi Everyone,
Having being a lurker for several months, I’d just like to say what an inspirational and supportive group this seems to be.
Does anybody please have any knowledge or advice about obtaining medicines privately (from a proper NHS neuro I mean). I don’t reckon I meet the NHS guidelines for Tysabri but I think on balance, I want to take a managed risk with it. I’m guessing private purchase is cost prohibitive but just thought I’d ask if anybody knows for sure.
Thanks everyone.
Pete
Hi Pete,
I may be wrong, but I don’t think they’ll change the criteria, just because you’re willing or able to pay. I’m sure it will be beyond the means of most “ordinary” people anyway (though I’m not making any assumptions about your circumstances).
But I’ve never actually heard of anyone paying privately for DMDs - even if they could afford to. If there’s not a compelling case on the NHS, I don’t think there wouldn’t be privately either. The clinical considerations would be the same. I’m sure you know Tysabri is not without risks, and that’s why it has to be balanced with the severity of the patient’s circumstances. It’s not just about the money!
It would be unethical of the neuro to prescribe something he wouldn’t otherwise deem appropriate, just because the patient offers to pay.
Tina
Ha ha. Thanks Anitra. My circumstances are most definitely “ordinary” :-)!
I’m not sure your advice is quite right though because I know somebody who paid for their own cancer drugs (for a drug that NICE had rejected) so it can be done. I’m 99 per cent sure they were prescribed privately by an NHS Oncologist.
Personally, I think the “appetite for risk” versus “potential benefits” question should be more for the patient than the doctor. Because everyone has a different world view.
Does anybody know anymore about this subject please? As in, are private prescriptions possible for MS DMDs and what do they cost?
Ha ha. Thanks Anitra. My circumstances are most definitely “ordinary” :-)!
I’m not sure your advice is quite right though because I know somebody who paid for their own cancer drugs (for a drug that NICE had rejected) so it can be done. I’m 99 per cent sure they were prescribed privately by an NHS Oncologist.
Personally, I think the “appetite for risk” versus “potential benefits” question should be more for the patient than the doctor. Because everyone has a different world view.
Does anybody know anymore about this subject please? As in, are private prescriptions possible for MS DMDs and what do they cost?
I don’t know the exact details, but I was under a private neuro for diagnosis and as soon as we got to the DMD discussions and ongoing care issues, he immediately referred me back to the NHS. From what I understand the costs are huge and since they’re a long-term thing I think it’s highly likely to be out of most people’s reach. At one stage a figure of £30k per year was mentioned, but I’m not sure if that was an injectable or Tysabri. Might be worth actually contacting a private neuro and asking outright. My first neuro no longer worked on the NHS and just did a private clinic and drugs trials/research. Someone like that might be worth talking too. X
That’s a nice can of worms you have opened, Pete.
The first thing is that prices to the NHS are qoted as “net” so that there might be a VAT component to go on, as well as an increased price. As an example, Copaxone is just under £19 per syringe (i.e. per day) net. Upping the price, and adding VAT could easily run the price up to over £10K a year. Then you have to factor in the fact that the stuff is delivered by a contract service (in effect a dedicated pharmacy) so who knows what effect that could have on costs.
The actual prescription does not have to come from a neuro (an MS Nurse signs mine, and passes them to the delivery agent), but the initial administration must be supervised by an “experienced person”. This could mean anything, from the travelling Copaxone nurse, on up. I do not know just who pays for this service, but someone has to. I am sure that similar arrangements apply to the other DMDs - but I don’t know what they are.
An NHS prescription means that the client does not have to worry about the little details, and can concentrate on doing the injection.
Note that each DMD has a slightly different set of rules as to who “qualifies”. so you really do need expert advice from a Neuro or an MS Nurse. But do let us all know whatever you do find out.
Of course, if you do arrange a private source of a DMD, and you take it, and it works, so you do not have any relapses, this could actually disqualify you from getting the same medication on the NHS. Think about it!
Geoff
You do not have to consult a private neuro (and probably pay £200 for that!) to find out whether there would be any additional options open if you were willing and able to pay.
Most neuros work in both private practice and the NHS (I see on the NHS the self-same one I first saw on BUPA - he referred me to himself!) so any decent neuro will know if there’s anything in the private sector has anything to offer, that the NHS wouldn’t/couldn’t.
It would still be unethical of the neuro to ignore his own assessment of the risks v. benefits, and prescribe something just because the patient wants it. He would have to be satisfied the riskier treatment was justified by the seriousness of the patient’s condition - which doesn’t seem likely, here.
I do think terminal cases are slightly different (I don’t know, but am guessing, your acquaintance was dying of cancer?) The risk/benefit analysis is not as morally complex, since there is little real harm that can be done to someone who has very limited life-expectancy anyway - although if things didn’t work out, there’s always the risk of shortening their life still further, or degrading their remaining quality of life.
For the vast majority of MS patients, it’s NOT a life or death issue, so it would be much harder for a consultant to make the ethical case for a treatment that has not been endorsed as “appropriate” to the patient’s condition. Also, with cancer drugs - particularly those that have the potential only to prolong life in “untreatable” cases, cost is much more of a factor.
Obviously, to the patient and their family, an extra fortnight or month is priceless. But if it’s bought with £20K of NHS money, is that good value for other NHS patients? So much money, so little change to the outcome? There may be no clinical debate that the £20K could buy a small reprieve, so the ethical issue is not: “Are the risks worth it?”, but whether public funding is appropriate.
I think that’s a very different case from the MS patient who wants a more radical (and riskier) DMD than their disease course would usually indicate.
I think this is all going to prove academic anyway, as the cost will mean paying privately isn’t a realistic option, even if you could find a neuro to back you. Morbid though it seems, a difference with the cancer cases is that the patient/family will not face funding it indefinitely, as nature will take its course. How would you feel if you were able to fund Tysabri for six months, but then your money ran out? Would you feel worse at having to stop, than if you’d never taken it in the first place?
Tina
Hi Peter
Geoff is completely wrong about the VAT, unless you have to get Tysabri from an NHS pharmacy. If you can get it from Healthcare at Home, BUPA or from a normal Boots type pharmacy then you don’t pay VAT. If you have to get it from a hospital pharmacy, you have to pay VAT.
The cost of Tysabri without VAT is £1130 per vial. You need 13 vials in a year (one every four weeks) so that is £14,690 for a year’s course.
I know you would need to be put on the drip by a qualified nurse and I don’t know whether you would be able to do this at an NHS hospital if you were paying for the drug yourself. I do know that Tysabri is meant to reduce attacks and accumulated disability by 66% not stop these things completely, so the stuff about if ‘you do not have any relapses, this could actually disqualify you from getting the same medication on the NHS’ is quite dubious too.
Thanks Sewingchick. You have already been so helpful but… would you happen to know the cost of Gilenya also please?
I’m guessing that the logistics would be a lot easier with it being an oral medication etc. Thanks.
Peter
From memory £18,000 a year. You can find out if that’s correct by googling cost of Gilenya. But you will need to find someone to prescribe it.
According to a year-old BNF, the net cost works out to £19162.5 if supplied in the 28-dose pack, or the 7-dose pack.
Geoff