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Posted: Sun Oct 24, 2004 12:13 pm Post subject: Ethical question
Dear all,
This one is probably more relevant to UK sufferers as the UK do not prescribe CRAB drugs until after a second attack.
Here's my issue - I have had one attack in March of this year and diagnosed as having MS (MRI scan showed scars in brain and spinal cord) in May. I have not had another attack. Current thinking is that it is important to prevent attacks / damage as soon as possible (US approach). If Antegren is approved and is more effective than the current CRAB drugs (and is made available in the UK - say next year) - would it be ethical to 'fake' an attack to get onto the drugs rather than wait for the next one -which could be a couple of years away? (I've seen research papers which suggest that attacks continue between the one which we notice)
Joined: Jun 20, 2004 Posts: 1040 Location: Tennessee
Posted: Sun Oct 24, 2004 2:50 pm Post subject:
ewwwwww, bromley. That's an interesting question you pose there.........LOL
I'd say "yes" about the unethical side of the equation (i.e. that it definitely is unethical, in my sole opinion anyway). Even if I do understand why you might consider it, due to your concerns of having to wait too long for therapy, I'd still personally advise you (for what its worth) to consider another avenue of persuasion.
Frankly, wouldn't it be more productive and honest to simply ask your neuro if s/he would mind watching your condition more closely for evidence of a second attack or continuing damage (which as you say, can be happening even without symptoms), precisely because you do wish to get on Antegren (or something) as soon as possible to prevent any possible further damage?
I'm not sure you could "fake" an attack anyway. You can't fake optic neuritis, because that can (and cannot) be detected simply by them looking in your eyes; you can't fake weakness, because little did we know, but they have methods to determine if we are faking or not, depending upon how much pressure they place on us when they do those neurological tests (i.e. push on my hands, up, down, sideways, etc.); tingling, numbness, etc. can't be "proven", but doesn't necessarily indicate a new "exacerbation" anyway; faking balance issues MIGHT work, but man.......the neuros know what they are looking at, again causing me to truly believe they'd catch a faker; and having an MRI performed wouldn't prove a second attack unless you WERE having a second attack (possibly), especially if no new lesions showed up. Even spasticity issues can be "felt" by the neuro and they know what to look for there, also.
Perhaps you could complain about the tingling, numbness, MS hug, etc. symptoms for more than a few days in a row, but you'd be more likely to get a steroid first, wouldn't you? And who wants to undergo steroid treatment for nothing?
I'm curious, how WOULD you try to "fake" a second attack?
Well Oreo I'd have no ethical problem "faking it" - it is pretty much a victimless crime - I suppose you would be ripping-off a very wealthy drug co who, it could be argued, in any case should be paying you to test their formulations.
But look at your med history perhaps with the help of your GP you'll probably find something there and it will be documented.
Or locate another neuro which might be an easier thing to say than to do - guess the GP would come into play again.
Hope it comes good anyway you choose. _________________ John
I am what I am
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Mon Oct 25, 2004 7:28 am Post subject: Re: Ethical question
I'm going to advise against "faking" a second attack of MS. That's all you need to have happen is your doc eventually discovering this and that could lead to long term problems when it comes to a doctor/patient trust.
This is a personal opinion but I believe that one of the reasons that many US docs want you to start on one of the CRAB drugs as soon as possible is due to the influence of the CRAB drug makers. There is a lot of money to be made with these drugs!
A couple of months ago the Mayo Clinic in the US published an article that recommended MS patients wait much longer before starting their drug treatment. They felt little was to be gained by starting early and that a "wait and see" attitude was better in the long run. The limited benefit to only about 1/3 of CRAB users I'm sure was behind this article.
I would also wait before jumping into Antegren when it becomes available. The real test of this new drug will be the benefit patients get from it after its use outside the clinical trial atmosphere. Hopefully the docs will have a much better system in keeping track of the results than they did with the CRAB drugs after one year of patient use.
Harry
Last edited by HarryZ on Mon Oct 25, 2004 1:11 pm; edited 1 time in total
Joined: May 19, 2004 Posts: 99 Location: Waltham, MA
Posted: Mon Oct 25, 2004 11:13 am Post subject:
Is it unethical - yes. Should you do it? Possibly. I don't know what kind of relationship you have with your doctor, but you might be able to see if they'd go along with it. Then you'd avoid the problems Harry alludes to (which is probably what you need to consider). The state I live in requires certain blood tests in order to get a marriage license and I disagree with that policy. My doctor gladly gave me a false statement of having taken them. That's not the same level infraction as you are considering, but it is the same idea.
As to faking an attack, you don't need to fake ON, you can go for a sensory attack (burning or tingling patch that keeps getting worse for a few weeks). Not that I'm condoning this behavior
Hopefully you are using an assumed name to have this discussion - the internet has a horrible way of coming back to haunt you once you unleash something into it. _________________ Art Mellor Dx 2000
You can see what we have to offer at
http://www.acceleratedcure.org/offerings/
Posted: Mon Oct 25, 2004 11:50 am Post subject: Ethical Question
Dear all,
Thanks for all your responses. I'm in no way trying to defraud anyone. My view is simply this - my neuro has diagnosed me with ms and has written to my doctor to confirm this. However, in the UK, you are not entitled to start CRAB treatment until a second attack (I assume budget issues play a part in this policy). My view is that as they know what I have got - I should get the best treatment at the best time. Unfortunately, as with anything connected to this disease, it is never straightforward. Some say it's best to wait and see, others say take the CRAB treatment as soon as possible. It's also complicated by the various claims of the CRAB companies - some of which seem impressive to a layman like me.
What we really need is an independent validation agency (such as the National Audit Office in the UK or the General Accouting Office in the US) to provide an independent assessment of all the statistics published by the companies / the various trials. Then I could make an informed decision.
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Mon Oct 25, 2004 1:13 pm Post subject:
Deb,
Ugh....how could I have made such an error!!!! I have edited my reply to reflect "against" faking an attack. I guess I wasn't as awake as I thought I was when writing that note.
Joined: Jun 20, 2004 Posts: 1040 Location: Tennessee
Posted: Mon Oct 25, 2004 5:31 pm Post subject:
Hey, no problem, Harry! It's not like I don't edit a million times! LOL
Ok......now I'll click into legal mode. Bromley, what are the possible legal repercussions if you get caught? I mean, why is there such a "rule" in the first place? Who created it? Who regulates compliance?
Provision of CRABs under the National Helth Service in the England and Wales is subject to a "risk sharing" agreement with the manufacturers drawn up by our National Institute for Clinical Excellence (NICE) see <shortened url> for details. For patients there is no specific charge for the medication. But NICE's strict view of CRABs is
Quote:
On the balance of their clinical and cost effectiveness neither beta interferon nor glatiramer acetate is recommended for the treatment of multiple sclerosis (MS) in the NHS in England and Wales.
I've copied some key features of the risk sharing scheme here
Quote:
- the scheme applies to patients with relapsing remitting MS and those with secondary progressive MS in which relapses are the dominant clinical feature. All patients meeting the Assoc British Neurologists criteria are eligible to be entered into the scheme and to receive treatment;
- treatment will be initiated only by specialist MS centres determined by local agreement;
- target outcomes for patients have been agreed for each product included in the scheme. There would be an acceptable level of cost effectiveness for the NHS if the targets are achieved in full;
- outcomes for a cohort of patients in the scheme will be monitored at annual intervals. The cost to the NHS will be adjusted on a sliding scale if outcomes differ from the agreed target for a product;
- monitoring and potential price adjustments under the scheme are expected to continue over 10 years;
- NHS bodies are expected to fund any treatment within this scheme prescribed by clinicians for eligible patients, in accordance with the directions. The choice of treatment, within those covered by the scheme, should be made on clinical grounds by the prescribing clinician in consultation with the patient taking into account expected benefit and potential side effects;
- there is no bar to clinicians prescribing and Health Authorities and NHS Trusts funding beta-interferon and glatiramer acetate for patients who do not fall within the ABN guidelines where they judge it clinically necessary;
I looked again at the NICE guidelines, which I believe are to be reviewed next month (Nov 04), http://www.nice.org.uk/pdf/CG008publicinfoenglish.pdf the admission into the scheme is stricter than just two relapses, there is a two year time-frame as well. But the last feature I quoted, if it hasnt been superceded might give you some leveage with your Neurologist Bromley. _________________ John
I am what I am
Joined: Jun 20, 2004 Posts: 1040 Location: Tennessee
Posted: Tue Oct 26, 2004 5:09 am Post subject:
John,
That's what I just noticed, also. That last statement you posted.
There should be no need to take any kind of risk and "fake" it. They must have known there would be that loophole with patients trying to get around the regs, so they just went ahead and closed it on their own.
So..............honesty with your neuro, Bromley, should win out. And simply be a win/win situation all the way around.
I guess I'm just one of those people who believes that ethics and honesty always comes first, no matter how small.
I'll lecture for just a second, and say that this small investigation into just what your options REALLY were, proves my point.
I suggest you dont fake. But one thing you could do is say you had symptoms before the first attack. For example, say you noticed a partial loss of sensation on the arm but thought it was dry skin. Also you had sharp back pains. Ask your neuro whether he thinks this could have been a previous attack, without suggesting too much you've had 2 attacks.
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