I didn't delve too much into it in my last post, but I had been dealing with a bit of a mini breakdown.
The realisation that I had MS had hit me in a BIG way and what with trying to convince the rest of the world that I was fine thank you very much and trying to maintain that same facade in my private life, it all became a bit messy.
But I dealt with it.
I cried. I felt sorry for myself. I moaned. A lot. I lay on the sofa watching rubbish day time telly and thought about things.
Then I started to put it into perspective, and you know what, I feel ok. And feeling ok has made life so much easier.
I've taken steps to stop my energy levels dropping so even my fatigue is starting to feel manageable.
Don't get me wrong - life isn't perfect, but in this imperfect world I occupy, it's probably as good as it is going to get. And I feel at some kind of peace for the first time in a while.
- And then I was rocked.
- And I am worrying.
- And I feel angry all over again.
- And it is all down to this:
Not content with having made a fortune first time around when the drug was first released to treat some forms of cancer, the drugs companies appear to be having a second bite of the cherry.
They have kindly withdrawn Alemtuzumab until they can get a new licence to sell it as an MS drug.
So this drug, which is helping so many people get on with their lives, is now in short supply to those who desperately need it.
Who knows when the supply will be restored? It's like some kind of nightmare.
You see (and now I am going to rant about why this is a really hard pill to swallow for me) I am now 35 years old. My husband and I would like another child but our plans have been put on hold because it isn't wise to have a baby within six months of having the treatment. Our plans are on hold because we want to get this treatment out of the way so we can concentrate on our family.
I am/was due to have my second dose of the treatment in November. Six months after that we hope to be crossing our fingers that we find ourselves blessed with another child on-the-way. I will be 36 then. Time is ticking on. And who knows if we will even be lucky enough to extend our family but we hope so.
Now we are in a position where my treatment could be delayed and this could mean we are forced to push back our plan to give our son a sibling. And at my age, I can't really afford to delay trying for a baby.
I'm trying not to worry. But I am. In fact, I can't stop thinking about it.
And I can't stop thinking about how getting richer seems to be more of a priority for some. And as a result, an army of people in the Campath Club, like me, who thought their life had been given back after it was snatched by the MS monster are now facing a world of uncertainty and despair again.
Sian,
ReplyDeleteI can so identify with what you talk about. My gorgeous daughter will be 2 in November, and we so want a sibling for her too, but I am on DMD's and the question always is, when do I stop so that we can conceive? It feels as though a process which should be natural and fun(!) is being micro-managed ALL the time. I thankfully have some more time, having just turned 30 in April, but it still feels like the biggest decision. I hope you find answers soon ... in the meantime, I was sent a quote yetserday that has really touched me and it might help you too ...
Learn from yesterday, live for today, hope for tomorrow xx
Dear Sian
ReplyDeleteI'm not sure what links you have with 'The Campath Club' but best of luck with that. 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 miiligrams 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.
T (a neurologist that uses Campath)