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TX: 13.04.06 - MS Treatments and Risks

PRESENTERS: CAROLYN ATKINSON AND SHEILA MCCLENNON
ATKINSON
Dozens of multiple sclerosis patients are being denied a crucial drug called Beta interferon because it's too expensive. It's the latest example of the desperate financial crisis hitting the NHS, most recently we've also heard about problems prescribing Herceptin for some breast cancers and Avastin for some bowel cancers. As we've been hearing during our week of reports on MS more than 85,000 people are diagnosed in the UK and it's the most common neurological disabling condition facing young adults.

Beta interferon can delay the progression of the disease but some NHS trusts are refusing to pay the £8,000 a year and they're putting people on waiting lists of up to 18 months. That means for many patients the condition has advanced too far for the drugs to do any good. Now this is despite government promises back in 2002 that the treatment would be available for all. Well I'm joined by Professor Alan Thompson, from the National Hospital for Neurology and Neurosurgery in London and he's also the medical advisor to the MS Society. Also here is Judy Graham, who herself has MS, and she edits the magazine for the MS Resource Centre - that's a charity which promotes an alternative approach to dealing with MS - and Chris Jones, chief executive of the MS Trust who also has MS.

Now Professor Thompson, first of all, just tell us what these Beta interferon drugs are.

THOMPSON
Well the interferons are agents which we actually produce ourselves and which in multiple sclerosis reduce the frequency of attacks by about a third. There are three products on the market and they along with Copaxone are used regularly now for the treatment of MS.

ATKINSON
Now we're hearing people being put on long waiting lists, why is the timeframe so important here?

THOMPSON
Well there is a body of evidence that feels that early treatment is beneficial because we know that even at the beginning of MS you can start losing nerve fibres and this may help to prevent that. But there are also criteria which mean that you need to have two attacks before these drugs can be prescribed and of course if you have to wait a number of years you may move into the progressive phase of the condition and may not then meet the criteria or miss the boat, so to speak.

ATKINSON
And Chris Jones from the MS Trust, you've actually just come here from a meeting with the Royal College of Physicians, you're doing what's called a 360 degree audit - you're looking at how MS services are being delivered across the NHS. Do you think this Beta interferon situation, if you like, is indicative of how MS services are being delivered at the moment?

JONES
Yes, I think Beta interferon is certainly part of that whole MS service delivery by the NHS and we're certainly very upset that we all fought very hard to get the Department of Health backing in 2002 for these drugs to be made available. And when you have numbers of young people, as we have at the MS Trust, ringing us up saying that they can't get the drug therapies, they've been told that they're eligible but there isn't the funding available for the drugs, obviously it's very upsetting. And as you say I think with people with MS there's this feeling that you can't turn the clock back.

ATKINSON
So time is key?

JONES
Yes.

ATKINSON
Now Judy Graham you're from the MS Resource Centre and you concentrate more on alternative therapies and alternative treatments for MS. If people don't want to take or can't take the pharmaceutical drugs, as it were, what alternatives are there?

GRAHAM
There are many, many alternatives and there's loads of people who are doing extremely well on complementary therapies. The most important one is known as the Best Bet Diet. And basically that's giving up things that you may be sensitive to, quite commonly that's gluten and dairy produce but there may be completely other things - I can't eat bananas, eggs, lemons or kiwis - so could be anything. So exclusion diets and then you've got things like yoga, excellent results with yoga, Tai Chi, acupuncture, shiatsu I have every Friday, Reiki, reflexology - wonderful, Pilates, gentle exercises, hypnotherapy, homeopathy. I would say that goat serum is not an alternative therapy, they would argue that it should be ...

ATKINSON
We'll come to that in a moment. Hyperbaric oxygen tanks, people go and sit in that and breathe it in, people have bee stings ...

GRAHAM
Very few in England have bee stings. There isn't a huge amount of evidence and with these alternative therapies there's no money in getting research done. It's very much on an anecdotal evidence - people feel better for having them done, they go in feeling tired to a HBO chamber and they come out feeling all the fatigue has gone away, likewise with yoga sessions you can see the people have got more muscle strength after doing sessions of yoga etc. etc. So it's very much taking themselves as a case before and after picture, they're worse before, they're better after.

ATKINSON
Professor Thompson, do you think there's any evidence that these can all work together?

THOMPSON
I don't think there is an evidence base, as Judy has said, I have no doubt that it makes people not just feel better but actually improves their health and that it's an important element in the whole wellbeing that is really important in MS. It would be much better if we could have an evidence base for at least some of these approaches and hopefully we will actually get there.

ATKINSON
Now cannabis is something that we've heard a lot about, it's in the headlines a lot, there's a lot of talk about the good - whether it's good, whether it's bad - and it's arguably widely seen as an alternative treatment which at least anecdotally at least people have always claimed helps pain and helps spasticity associated with MS. And the Home Office recently set up a system for GPs to prescribe a cannabis based drug on a patient by patient basis. Now there's a lot of excitement in the world of MS research because it's thought that cannabis could have possible longer term effects in terms of affecting the progress of the disease itself, rather than just the symptoms. Professor Thompson, this has come out of a trial that was done looking at pain and spasticity and then they sort of came up with more didn't they.

THOMPSON
Yes, well I think the first thing to say is that cannabinoids are a very interesting group of substance that we actually produce ourselves and they are very exciting and I suspect they may have a lot to offer. There was a study called CAMS which looked at the effects of cannabinoids in spasticity and pain and the initial results were fairly equivocal and certainly weren't overwhelmingly positive. But within a year when the results were looked at after a year there was a suggestion that there may be some longer term benefit from the cannabinoids and this has prompted a further study funded by the MRC which is going to carry on over five years led by Professor John Zajicek in Plymouth and this is really looking at a different approach - it's looking at the concept of protecting the nerve fibres or neuroprotection. Now this is really moving on, if you like, from dampening down inflammation, which is what the interferons do, into looking at substances which might actually protect the nerve fibres from attack. And that'll be particularly important in people that have more progressive forms of the condition.

ATKINSON
So we're moving on from treatment of symptoms to possibly hoping that perhaps one might start stopping the disease?

THOMPSON
Yes, you're actually looking at seeing if we can influence the disease itself and have a real effect on the development of disability and on progression.

ATKINSON
And so in the world of the scientist, if you like, never mind the people with the MS, but the scientists are getting excited about this concept of neuroprotection?

THOMPSON
Yes indeed they are and I think it's fair to say that scientists in the UK are leading the way in this because they are embarking on new trials looking at neuroprotection.

ATKINSON
Now another exciting area of research in this area of neuroprotection is being done at the Institute of Neurology in London and I went to meet the team researching the effect of a drug called lamotrigine.

KAPOOR
I'm Dr Raj Kapoor, I'm a consultant neurologist at the National Hospital for Neurology and Neurosurgery here in London. And we're sitting here in the MS Society's MRI research scanner and there's a little bit of background noise because we have cooling units and machinery all around us and the scan machine itself is next door to us, cooled by liquid helium.

ATKINSON
You're about to start a trial and it's being seen as very exciting and it's being seen as a world first in terms of neuroprotection. What are you actually going to be doing?

KAPOOR
Well the drug that we're using is called lamotrigine and it's a type of drug that's been around for quite some time now, it has been used to treat people with epilepsy. It's also actually been used in people with MS because some people with MS develop pain for other symptoms that lamotrigine can treat. And the interesting thing is that through the work that's been carried out over the last few years we've discovered this rather unsuspected property of lamotrigine that it might actually save people from disability, quite apart from treating any other symptoms that they might have.

ATKINSON
Who spotted that possibility?

KAPOOR
It came from basic experiments which we were carrying out with my colleague Professor Ken Smith in his laboratory at Guys Hospital. We've had to go down a very long road of understanding how disability occurs in people with MS and to put it simply it turns out that disability happens because the fibres that connect different parts of the brain together get damaged progressively as MS goes on. Now one of the ways that happens is that when nerve fibres in MS communicate, when they work, they can get overloaded with the chemical sodium and indirectly that can cause them to get damaged and actually to degenerate. And lamotrigine happens to be one of those drugs that blocks the entry of sodium into cells. So what we're trying to achieve here is to switch that process off.

ATKINSON
From the work you've done so far what are you hoping will be the outcome if things go very much according to plan?

KAPOOR
The ideal outcome and one which we'd love to see is that we do prevent the damage from occurring and that people don't become disabled. I think in reality we may not get a perfect result of that kind, that would be really asking a great deal but going anywhere towards that would still be a significant improvement in the way we can handle this condition.

ATKINSON
And how excited are you about this and how excited do you think patients ought to be?

KAPOOR
We're clearly very excited because for the first time we're trying to do something which nobody else has done and that is to understand basically how disability happens and to take practical steps to prevent it.

ATKINSON
Professor Raj Kapoor at the Institute of Neurology. Professor Alan Thompson is still with us. Professor Thompson, Professor Kapoor there, is talking about sodium deposits blocking messages going down the nerves, is it a little bit like a mudslide on a mountain road - you clear the mud away, the traffic can get through again?

THOMPSON
I think you could describe it like that. But it is, I would agree with him, an extremely exciting study and I have to say one that has been funded by the MS Society, so full marks to them for supporting this.

ATKINSON
What sort of timescale might we be able to say we're on here, for people listening who have MS they're going to want to know when might it be available?

THOMPSON
Timescales are always frustratingly long and this study will take two to three years, if not a little bit longer, and then it will depend on the result. If the result is very positive of course we may be able to access this agent quite quickly. The important point is that these are drugs that are around at the moment so we don't have to go through the phase of actually developing them.

ATKINSON
And Chris, from your point of view, people are calling you all the time and wanting to know what's next, what's new, when can I have it.

JONES
Yes, I think we did a survey, the MS Trust did a survey some while ago and the thing that - in terms of what people need by way of information and what came out number one across the board was we want information about research. And that means hope actually.

ATKINSON
Well another area of research which has been hitting the headlines involves stem cells. Now say the word stem cells maybe five years ago and you would have got blank looks all round but now everybody seems to be talking about them. It's a potentially exciting area of research not just for MS but for Parkinson's, for diabetes and lots of other long term conditions. Professor Thompson, just briefly, tell us what a stem cell is.

THOMPSON
Very simply it's a primitive cell which has the potential to develop into virtually any kind of cell and then in an ideal circumstance do what you want it to do.

ATKINSON
Well there's a lot of stem cell work going on in the UK, in Cambridge there's the Myelin Repair Centre, headed up by Professor Robin Franklin and I went to Bristol to meet a team at the Frenchay Hospital who were also leading the way.

SCOLDING
I'm Professor Neil Scolding and we're in the labs here at Frenchay Hospital and you can hear the whirring of various fridges and other machines behind me. We're working with bone marrow stem cells and we get those from our colleagues - orthopaedic surgeons - who are doing operations obviously on patients all the time. One of us goes over to the orthopaedic theatres at the time that they are, for example, doing a hip replacement. We are able to obtain some of the bone marrow sample from the hip that's being removed and then we bring back that sample of bone marrow, which looks like bone marrow that you'll see in a butchers, those of you who've got dogs will know dogs are very fond of bone marrow and you lick it out - it's a very soft substance right in the middle of the bone. And that's the material that contains all the cells that we need to make our blood and that's where blood is made but we now know that there is also a small population of cells there that are stem cells and will make tissues completely unrelated to blood and they will make brain cells, they will make muscle cells and they will make also the sorts of cells in the pancreas that diabetic doctors are interested in and that's why there's so much interest in these cells.

This is David Gordon who's got some bone marrow stem cells in his hand.

GORDON
The next flask is in this case 20% serum, I think that looks slightly better, so I'm hoping that playing around with the conditions like this might actually you know ...

ATKINSON
So we've got two vials there.

GORDON
Two petri flasks.

ATKINSON
It's a pink liquid in there and what is that?

GORDON
That's basically a growth medium which has various nutrients in it that are required by the cells and it really just simply provides all the nutrients they need to ...

ATKINSON
So it's like plant feed really, plant feed for stem cells.

GORDON
In some respects yeah, it is pretty much just simply what they actually survive in and what they need.

SCOLDING
So how old are those David, when did we extract those?

GORDON
These cells were actually extracted about two weeks ago.

SCOLDING
So those are now 10-14 days old and that would make them reasonable to look at under a microscope, we could go and do that now.

GORDON
Certainly.

SCOLDING
Well the aim of the treatments that we're trying to develop will be to use these cells to replace the cells that have been damaged and killed in fact in multiple sclerosis - the cells in the brain and the spinal cord - and to use the stem cells to replenish and put them back into the nervous system.

So now we're in the clean room, we're in the sanctum sanctorum - we're extremely privileged to be in here - it's much quieter and we try and keep this room as clean as possible because we need to keep these cells sterile of course as we grow them. And David's just put them on the microscope base and we can look down and show you some bone marrow stem cells.

ATKINSON
So I can see lots of ...

SCOLDING
There are lots of them.

ATKINSON
... black lines and those are the stem cells. So potentially what I'm looking at down the microscope here ...

SCOLDING
Those are the sorts of cells that we would hope in the future to be able to help patients by repairing the damage in the brain and the spinal cord, that's our aim and those are the cells.

ATKINSON
What would make you very happy if you could achieve a certain success with this treatment, what would you like it to do to people?

SCOLDING
Well I think there are two aims of this therapy and put very simply the first is to stop people getting worse and the second, even bigger task, is to see whether we can actually cause improvement in problems that may have been present for months or years in patients.

ATKINSON
That is the holy grail though of MS isn't it and you're talking about it as though it's a distinct possibility. Is that giving false hope to people do you think?

SCOLDING
That's the very last thing that I would want to do and I think to imagine that an individual who may have been in a wheelchair for 10 years after this sort of therapy could spring out of their chair and start running for England is not realistic. If we can help stop patients getting worse that alone would be an enormous achievement that just hasn't been possible so far in 50-100 years of research into multiple sclerosis. And then if we can bring about 2, 3, 4, 5% improvements, those are the sorts of improvements that if you're realistic you have to begin to look for and then if it's more than that in the longer term so much the better, it's certainly more than we can do at the moment.

ATKINSON
Professor Neil Scolding at Bristol's Frenchay Hospital.

Well all of this raises the question of risk - what is acceptable and what is downright dangerous?

Sheila has been reading your e-mails which you've been sending all week, Sheila what are people saying?

MCCLENNON
Yes, just a couple here. Starting with Jenny who has MS and she e-mailed us to say: I'm desperate to try the goat serum, I've nothing to lose, I've everything to gain, it's a chance to perhaps lift the dark clouds which have enveloped my life in the last 11 years. I'm tired of trying to claw my way through each day, I want to try anything including stem cell treatment, which may in some small way help improve the hell of living with this pernicious disease.

But a note of caution from Irene who says: I have relapsing remitting MS and I wouldn't ignore risks to improve my quality of life, life isn't so great right now but things could get a lot worse if something goes wrong with an unproven treatment. Some people swear by changing their diet - okay, that's fine there are no risks involved, but goat serum, even cannabis, have no scientific backing, I'd leave well alone.

ATKINSON
Okay, well recently we have been hearing lots of cases of people paying commercial companies more than say £10,000 for stem cell treatment. Judy Graham from the MS Resource Centre you've been writing a lot about this but given what we heard from Professor Neil Scolding there and his view is sort of back the tortoise not the hare, how can this be working already when he's still in the lab?

GRAHAM
Well why would anybody want to back a tortoise when there's a hare already around, I can't understand his mentality. It seems, with due respect to Professor Scolding, that there are other countries, such as the United States and Russia, South East Asian countries, are ahead of Britain, we may not like to hear it but they seem to be ahead. They have come up with stem cells that they claim are already available as treatments. Now it's true that more research does need to be done and I would be the first to say let people have the treatment now if they want it but let's get more research done as well.

ATKINSON
Professor Thompson.

THOMPSON
I have to come in here and disagree I think fairly fundamentally with Judy, not for the first time. I think I fully appreciate what Neil Scolding has been saying, this is a very exciting development but if stem cells are not used properly, if there isn't a proper scientific base to how they're given to patients they're potentially dangerous. And I think you have to have evidence of efficacy. I would also disagree fundamentally with how far ahead people are, I'm afraid the UK is very far ahead with five or six laboratories looking at different forms of stem cells and really in the States there are not trials yet of stem cells, certainly not in MS. So I think we have to have a very sound scientific base and then we have to evaluate the efficacy.

GRAHAM
Even without trials, and again I'm in favour of trials, I think that the choice is there, not in the UK, if people want to go to Holland or Belgium or Chihuahua in Mexico or even Mozambique, Ireland wherever, they should have the free choice to have that treatment they know they're taking a gamble. They say I know I'm taking a gamble, I know there's a risk but I have no quality of life, I've got nothing to lose and everything to gain, let them do it if they want to, knowing what they're going in to.

ATKINSON
We'll talk about the risks in just one minute. Chris, you get calls and you have had one very sort of emotive call this week.

JONES
Yes, this was from a lady whose son has MS, he's in his late 20s. He's quite severely disabled and he's going downhill fast ...

ATKINSON
And living in an old people's home.

JONES
That's right, he's in totally inappropriate accommodation. This lady was an intelligent thinking lady, she was able - she wanted evidence and that's where we believe quite strongly we need to look at evidence and who is providing evidence. Is it rigorous scientific researchers, like - or is it people who are looking to make money. And I felt so sorry for that woman. I don't know what decision she came to.

ATKINSON
And Professor Thompson you're saying there isn't the evidence so what are the risks?

THOMPSON
Well we don't know what the risks are and I think that's the most important point. I fully agree that people should be in the position to take risk but you have to quantify the risk so that they can then look at a risk benefit analysis - they can decide whether it's worth taking the risk. And at the moment - you mentioned people travelling for stem cells - there's no efficacy data, we don't know the risks, there's no safety profile, there's no monitoring and frankly it's very hard to support this in any way.

GRAHAM
There certainly could be more monitoring and more research ...

THOMPSON
There's none, so more risk.

GRAHAM
But we also hear on the other side of the story of several people, maybe it's only 5-10% of the total, but we get cases, people say I can now walk upstairs before I couldn't, I can walk further, my bladder is much better, I have more energy, I have a more positive outlook, my feet and legs are warmer, my muscles are stronger ...

ATKINSON
Okay, people are taking the risk and some people are saying that's a risk worth taking. One thing that perhaps sums up this whole issue of risk is a drug called Tysabri, which there was a lot of excitement about a year ago. It sort of nearly got to the stage of being given to people in this country but then people did die. Professor Thompson, there we have something that was this great hope and then suddenly it was all taken away.

THOMPSON
Yes, in part. I think you have to put this in perspective. In treatment of MS we have moved from two decades ago using drugs which were toxic and of doubtful benefit to drugs which are much safer and of partial benefit. And with Tysabri we have the potential of an agent which was more beneficial probably than the interferons but has rare - a very serious side effect and I think that we need to quantify that severe side effect, which is Progressive Multifocal Leukoencephalopathy, potentially fatal. And when that's quantified then look to see if we can go on to licence it.

ATKINSON
It's very hard to stop people trying things but do you think it's therefore - we're entering a stage where you're going to have a box of tablets, or whatever it is - injections, with a big warning, almost like a cigarette packet, you know, this could kill you?

THOMPSON
Risk is not unusual in the treatment of many conditions but it is unusual in the world of MS and in [indistinct word]. So I do agree, I think we will be moving on into that stage.

ATKINSON
Okay. Chris Jones, how optimistic are you about the state of play at the moment in terms of MS treatments?

JONES
I'm hugely optimistic in terms of MS research, in terms of treatment I'd really like to see what we already know is recommended and proven in terms of therapy, physiotherapy and so on, and I'd like to see that being delivered now.

ATKINSON
Judy - Judy Graham, do you think we need to continue combining all things, do you think more trials are needed to convince people like Professor Thompson that there are alternatives?

GRAHAM
Yes, I do think trials are needed, I think the stem cell companies really do need to put some of their profits, which will be enormous, into doing some research because they will not be taken seriously in this country and the United States and many other countries unless they do, do the research, they really have got to be pressurised by people like us to do the research.

ATKINSON
And Professor Thompson, you used to be cautious about where we are, are you cautiously optimistic?

THOMPSON
I'm always cautious but I think this is a very exciting time in the treatment of MS, we have unparalleled activity and I think the real possibility for major breakthroughs and treatment.

ATKINSON
So for people out there listening ...

THOMPSON
Cautiously optimistic, yes.

ATKINSON
Okay. Professor Thompson thank you very much indeed, to Judy Graham and Chris Jones thank you all very much.

MCCLENNON
And just to remind you that in our final report as part of MS week tomorrow we'll hear how the comedian Richard Pryer used humour to cope with his multiple sclerosis.


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