Thursday, 29 November 2012

Alemtuzumab: The cynical business of rebrand and recost

In August, I posted a blog about the withdrawal from the market of the drug Alemtuzumab (also known as Campath and Lemtrada).
As anyone who reads this blog knows, Alemtuzumab is the treatment I have been undergoing as a way to combat MS.
So far for me it has worked.
It has turned my life around. I no longer suffer from tingling feet and legs. My vision is not affected. I no longer get painful spasms in my arms. My hands and fingers work as they should.  I can now walk with confidence. I’ve even done a bit of running since I had the first dose in November 2011.
I feel better. I feel ok again. I feel I can look to the future.
I’ve just had my second (and probably last) dose of the drug.
But I am one of the lucky ones. I am one of the fortunate few who had the opportunity to get this fantastic drug. According to the MS Society, I am one of the 100,000 people in the UK have MS.
This drug might not be appropriate for all of those 100,000 – but for some of them it could offer the chance for a relatively MS-free existence.
But the company which makes the drug, Genzyme has taken it off the market while it seeks a licence for it to be used to treat MS.
Cynically, this probably means the cost of the drug will increase. And fears are that it will increase to a cost unaffordable for the NHS.
This fact makes me feel angry and saddened that a drug which has already made its developers a lot of money to treat people with chronic lymphocytic leukaemia (CLL) is being used yet again to make another fortune at the expense of the health of those people who could really benefit from such a treatment.
I don’t know if the story about a patient with CLL who also happened to have MS was treated with Alemtuzumab and saw a dramatic improvement to their MS is true. Or if this is how researchers realised the drug could be used to help MS. But the simple fact of the matter is that the drug was developed (and paid for) to help patients with CLL. As a complete coincidence, it also happens to help people with MS.
So how can Genzyme justify withdrawing the drug and then presumably re-releasing it with a heftier price tag?
According to its website: Genzyme is dedicated to making a major positive impact on the lives of people with serious diseases. Since 1981, the company has grown from a small start-up to a diversified enterprise with more than 12,000 employees in locations spanning the globe and 2008 revenues of $4.6 billion.”
It’s not just people like me – people who have MS who are dismayed by what is probably going to happen.
T – a neurologist who uses Alemtuzumab to treat some of his patients – commented on my earlier blog.
This is what he said:
“To put it bluntly, Genzyme has withdrawn the drug 'Campath' from the shelves. As the sole supplier you'd think they can't - but they can. It is NOT a licensed treatment for MS so they do not 'have' to supply it. It is a licensed Rx for relapsed chronic leukaemia - so they DO have to supply it - and have undertaken to do so on a 'named patient basis' - for free. So if a haematologist wants to treat a CLL patient they make a prescription, pharmacy order it, it is 'for the named patient only' and hey presto. Unfortunately we neurologists cannot use any "leftovers" under law (or prescribing rules); even tho the blood docs use literally hundreds of miligrams for a course and we use 12mg per day (less than half a vial) for 5 days then 3 days a year later - as you have been blogging about. 

The current list price is about £200 per vial. We split vials for MS-ers like you: so perhaps your total course will cost about £800-1000. Not including 8 days in a bed, food/drink/drip costs/steroids, extra scans etc. Just drug costs. The RUMOURS are that they are looking at a price of £60-70,000 per course for the 'new drug' (ie brand) Lemtrada - ie the 8 doses split 5:3 12 months apart. So perhaps just under £10K per vial!!! So not the "10-20x hike" mentioned in the Independent but a little more eye-watering than that - maybe 50-100x hike. They may well have spent £250M in developing the drug, running rigorous worldwide trials etc, but this will potentially ensure that NICE simply says 'no'; at least in the UK. As sure as eggs is eggs....

We managed to stockpile Campath and have enough to treat all our existing patients, as does the Royal Free so I hear on the grapevine. Other centres, even Cambridge that have developed the damn stuff, failed to do so and as you will know Alasdair Coles has been in the news on about this. Frankly, it is incompetent NHS administrators unable or unwilling to make immediate decisions to buy it with less than a day's notice and hence stockpile; that have caused this shortage aswell as the company. That's also a disgrace.
So it seems patients and medics are united in pulling this drug off the market to rebrand for sale at a higher price is a cynical, calculating and thoroughly underhand thing to do – everyone is united... everyone apart from those people who are set to make an absolute mint out of doing such a thing.
I suppose for those people who make such decisions, money is no object when it comes to treating the health of ‘me and mine’ but for the rest of us, it’s a pretty shoddy deal when a drug which can turn the health and life of someone with MS around is denied because it is too expensive.
We’ve seen it with the banks – big profits overrule any moral or ethical issues. And I suppose, those with their eye on Genzyme's coffers say rebrand and recost is good business.
But just because it is good business, doesn’t make it right.
Let’s just hope someone’s conscience is pricked into doing the right thing. And soon.

Tuesday, 27 November 2012

Two weeks since round two

Today is the two week anniversary of the start of round two.
How do I feel?
I feel ok.
I'm still suffering from a bit of vertigo but it is more of an annoyance than anything else.
My energy levels have increased although if I do too much standing or try to do too much I do need to go and sit down for a little while. But it's getting better.
Overall I feel better than I thought I would.
I've been signed off work for six weeks which I am glad about because I fear my work colleagues, as lovely as some of them are, are not the cleanest bunch. One takes great pride in sneezing (loud with an accompanying spray of germs) without covering his mouth. Apparently the particles which get fired out in a sneeze can travel up to 12ft. I feel repulsed and disgusted by this on a normal day. But with a compromised immunity as the one I am now sporting as well, you can add fear to that as well.
The dread of catching a bug is paramount in my mind at the moment. To the point where I've become a little obsessed by it. This is an absolutely ridiculous state of mind to be in considering I have a 21-month-old son who has a cough and runny nose on an almost permanent basis bringing home nasty little germies picked up after his day in nursery. Be that may, I am still a bit paranoid about being around anyone (apart from my son!) who may be harbouring some filthy bug desperate to find a new host.
So I've gone off radar from meeting up with people for a while.
To be honest, I don't really have the energy to go gallivanting so it's no hardship.
From this time last week, I feel 100% better but from this time three weeks ago I still feel pretty pathetic.
All in all, things are looking up but there's still a little way to go before I feel me at full strength again.

Wednesday, 21 November 2012

Day five after round two

Every day I feel more myself.
I am still pretty weak and pathetic and standing for too long makes me feel lightheaded but I feel so much better.
The vertigo which came back to haunt me as some of my old MS symptoms returned following the treatment is proving to be a stubborn swine to shift and I still have the feeling of a rolling brain every time I move my head suddenly. I don't know if you have ever experienced when you have a few tipples too many and when you go to bed the world starts to spin and you feel sick? Well that is what it feels like. Thankfully after the sudden head move, the rolling brain starts to settle within a minute or so. So it isn't unmanageable. It does make me not want to drive yet though.
But that is fine, I am happy sitting in the warm house watching rubbish telly and eating.
My appetite is still on over-drive. I still can't work out if it is because of the steroids or if it is because I'm being a little piggy... Oink oink.
I have put the anti-histimin tablets into the bathroom cabinet now I no longer need them.
I'm continuing to take the anti-virals twice a day and will do for the next couple of weeks. I still feel fatigued and am snoozing continually throughout the day.
My mood has lightened. As you can probably tell from my last post, I was a very angry lady a couple of days ago. Nothing could stop the ball of rage which was building up inside me and I felt I was fighting the world.
But you know what, it is amazing what effect time can have.
All of a sudden I feel peaceful again. I feel calm and I have started to laugh again.
One of the overriding emotions I have at the moment is a bit of embarrassment at how I suddenly became Mrs Tantrum. But hey, I'm not going to let that consume me. Haven't we all made idiots of ourselves at some time or another?!
So overall although the last five days haven't been easy - in fact they have surprised me at how hard they have been, I finally feel I can see the light now.
I was in a dark place both physically and mentally but things are looking brighter.

Monday, 19 November 2012

Day three after round two

This weekend has been a mixture of feeling pretty weak and pathetic along with the continuation of the MS symptoms that have re-emerged and an agonising and relentless feeling of anger.
I am raging at the world.
Feelings of self-pity and 'poor me' wrack my mind and I am so bloody cross at everything.
Every little thing feels like a slight and to those poor souls - family and friends who I love dearly - who are just getting on with their lives and haven't been in touch to see how I am, well I'm afraid you have borne the brunt of my wrath.
If it is any consolation, I know I am being unreasonable and I also know that my anger is misdirected. But bear with me because at the moment, try as I might, I can't help it. I will sort my head out soon I promise. Normal service will resume soon.
I just need some sympathy at the moment. I don't want to be strong. I want people to see I need a bit of TLC. Just for a bit. Just an acknowledgement would suffice.
Boo hoo hoo!
The depth of my self indulgence knows no bounds.
Physically, I feel stronger than I did yesterday but I think a fair description of how I feel is: "Strength of the louse".
Standing up for too long make me feel light headed. And I keep falling asleep at the drop of a hat.
The scorched cheek syndrome has thankfully calmed down and yesterday I only took one anti-histimin and today (so far) none. So we are on the road to recovery.
My appetite is still on over-drive which I'm blaming on the steroids but if I'm perfectly truthful is probably because I am feeling blue. I wish I was one of those people, who in times of trauma forgets to eat. Ha! If only. I have the opposite. In crisis? Reach for the crisps. Feeling low? Swallow back that chocolate. I'm like a cliche but hey, it's my cliche so I'm gonna embrace it.
And on that note, I can hear the toaster so I'm going sign off. I've got to keep my energy up after all.
PS. I have a new follower on Twitter. They make walking sticks. Funky walking sticks I may add but walking sticks all the same. I'm hoping I will never have to use their service.

Saturday, 17 November 2012

Big A - round two

This week I underwent my second course of Alemtuzumab.
This is my experience of it.

Day one
Fear and dread were to two overriding emotions which gripped me as I walked through the ward doors. I had worked myself up into a bit of a state truth be told. And the fear was all related to the canula of all things. I didn't want it in me and I didn't want my veins to get sore like they did last year.
The dread was because I knew the treatment was not going to be pleasant and I didn't want to feel awful.
Now before you accuse me of being ungrateful, I know I am very lucky to be getting this treatment and I am fully aware that I am one of the lucky ones - but it doesn't stop that feeling of self-pity creeping in and moments of darkness starting to crawl around my head.
But there I was, and it was time to get cracking.
There was a bit of a delay in the actual treatment starting and I managed to eat a whole family size bag of wine gums before the dreaded canula had even been inserted. Something which I regretted as soon as the steroid was hooked up because the filthy metallic taste came back and haunted me for the rest of the day.
Needless to say, along with the metallic taste came the increase in appetite and I managed to forage my way through various chocolates / biscuits / crisps and anything else I could lay my hands on.
After an hour, came the actual drug and as I lay there for the next four hours I managed to eat more in between napping and getting my blood pressure, temperature and heartbeat checked every thirty minutes.
Overall, the first day hadn't been a bad experience. That was until another MS patient getting his second dose of the Big A suddenly and without warning began having a terrible reaction to the drug.
He seemed to be in an incredible amount of pain and was crying and moaning. The nurses all rallied around and afterwards I found out his temperature had rocketed. He was moved to a different ward and I didn't see him again. But it was very upsetting to see someone in such a state and it panicked me that I would also react in a similar way.
That night, I began feeling quite nauseous and started getting 'scorched cheeks' but anti-sickness tablets and anti-histimins sorted me out. It was not an easy night's sleep though.

Day two 
Again the scorched cheeks plagued me on waking as did my increase of appetite but the treatment got under way pretty soon after waking and I managed to nap my way through it. I felt very tired.
The reaction of the man the day before was still on my mind and I found out that he was doing ok and would be continuing the treatment but he would be getting it over eight hours rather than four. I felt very relieved for him.
The treatment itself went pretty much as expected.
It was later that I started to feel pretty awful. I had terrible nausea. The first anti-sickness tablet didn't help and I was given a second which although took the edge off didn't actually get rid of the feeling. I have to say I felt pretty dreadful at this point.
I had a very disturbed night's sleep and the re-emergence of some past MS symptoms came back to haunt me - the worse being vertigo. It woke me in the night as I turned my head in my sleep and my brain felt like it was rolling around and around in my skull. It passed off but every time I moved my head too quickly, the feeling would come back.
During the night, after one of the observation checks by the nurse, I went to spend a penny and through my half closed sleep eyes looked at myself in the mirror as I washed my hands. I was amazed to see that my nose and chin had developed a strange hue of red. In the morning, my cheeks had also succumbed to the colour. Thankfully an anti-histimin came to my rescue.

Day three
The last day of the treatment couldn't come fast enough for me. I had suddenly found myself enveloped in a cloud of self-pity and it took all my energy not to cry at the slightest thing.
My scorched cheeks continued to glow as the anti-histimins wore off and as well as the vertigo symptoms I was also finding it hard to focus my eyes.
All of these past-symptoms were to be expected, I was reassured. It was very common for this to happen and it should wear off in a couple of days.
The treatment began early. But this time there was no continuous scoffing of sweets - the nausea was too bad. Again another anti-sickness tablet was administered which took the edge off.
Then suddenly as a young nurse who I had not met before came to take my obs, I suddenly broke down into tears. The poor girl didn't know what to do - which I was grateful for because everyone knows if you are too sympathetic to someone in tears, you can be trapped talking to them for hours about every woe. I apologised, said I was tired and managed to stop the crying. I was angry and annoyed at myself. I didn't know where this was coming from. The feeling of general unfairness and self-pity had started to take me over.
Thankfully, as soon as the treatment was done, I was unhooked and allowed to go home. It was all quite sudden really.
Home though didn't make the scorched cheeks or the nausea disappear and it was only the packets of drugs I was given that managed to make a difference.

Day one after the treatment
Two words described my general mood - anger and resentment. All the old feelings about MS came to bite me again. I felt so bloody angry at the world and I felt so bloody awful due to the treatment.
I didn't remember feeling as bad as this last year, but my husband says I was.
I felt weak, I felt awful, I felt like I had been through the mill. My cheeks continued to blaze and I felt so lethargic. The nausea was there on and off and again I couldn't stop crying.
It wasn't a good day. In fact I would go as far as to say it was one of my worst. Ever.

Day two after the treatment 
And now we are here on day two after the treatment. The vertigo is still there as is the poor eye focus. The scorched cheeks are ever present and I now feel like I am walking under water - everything is moving slowly.
My patience is still at snapping point and I still feel rubbish. But at least I am starting to feel like there is a light at the end of the tunnel now.
I realise the anger I have been feeling is partly because I want someone to acknowledge that I am having a shit time. I want someone to acknowledge that yes it is that bad actually. I want someone to acknowledge  that this is ball-aching for me.
But then maybe I should stop putting on a front when people ask me how I am doing and instead of telling them that yep, I'm doing great, I should for once be honest and tell them the boring truth that MS is a killer to try and get your head around.
I know I am lucky in many ways but right now I am struggling. Really struggling.

Friday, 9 November 2012

My MS adventure

Two things happened to me today.
The first was the realisation that in four days time I will be starting my second course of the Big A.
The second was the realisation of how much has happened since June 2010 when I was given the first definite hint I had MS.

So much has happened since that day when I spent an afternoon with my unborn son flourishing and fighting inside my body in a hospital ward with a sympathetic doctor called Ellie (whose kindness I will never forget and will always be grateful for) as I started wailing and mewling about the unknown and unpredicted future it looked likely I was facing now MS had reared its ugly head.

That day several sympathetic cups of sweet tea were presented in polystyrene cups and remained undrunk (because pregnancy had created an unwanted and unexpected aversion to my favourite beverage) and hope and ambition turned (temporarily I am pleased to say) to despair and fright.

Over the next months, the fear that my growing baby would be affected by the sensation loss I experienced from my toes, up and across my swollen belly to my chest was replaced by fear about how I would cope with a small infant.

And then the guilt. The guilt spilled from every pore. It invaded every thought, every conversation, every breath I took. MS and guilt had taken over my very being.

As if by magic, anger soon appeared. I raged. I cried. I hated. Oh how I hated. I became resentful and rebellious and impatient and generally a vile excuse for a human being.

It built up inside. All of the emotions, all of the unfairness of it all, all of the self pity. And suddenly I was cast into a dark, dark place. Was it depression? Possibly. Was it a break down? Maybe. Whatever it was the pent up emotion and pain was finally released over two weeks in tears. With every teardrop that fell, a little bit of hope returned. With every tissue thrown into the overflowing bin, a bit more of me started to return. Pain, someone said to me recently, is weakness leaving the body and with every tear I shed, the emotional pain was relieved.

Now I am here. I am me again. But this time I am me with MS. And you know what, I can cope with this. I have hope again. I'm going to be ok. I may not be the ok in the way I thought I would be before MS, but I'm going to be ok.

And in four days time, as I lie on the hospital bed with a drip attached to one arm and a bag of jelly babies being devoured, I won't be dwelling on the hand I have been dealt. Instead I will be dealing with it. I will be coping with it. And I will be ok.