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Why NICE Mustn't Withdraw Severe Asthma Treatment That Gave Me My Life Back

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I've had asthma all of my life but it really started to become a problem when I was 12. My attacks became severe and I spent five years in and out of intensive care - not the life any teenager has in mind when they're growing up.

I was put on high doses of really strong medication including steroid tablets that made me depressed, tired, dizzy and sick. I hardly attended any of my school lessons from that point and gained six stone in weight. A lot of people think asthma is just a little inconvenience that people grow out of - something that is fixed by taking a quick breath of a puffer - but it's not.
I wasn't living a life, my confidence plummeted and I felt that I had to constantly apologise for who I was - it wasn't me it was the medication!

Counselling didn't help and by the time I was 17 I was confined to my bed at home and had to use a wheelchair on the rare occasions I went out. Whenever I did go out I was mocked by other students who were the same age as me. I felt like there was no point to life anymore.

Neither it seemed did my body; in June 2007 the doctors at the hospital sat my mother down and told her there was nothing else they could do, that my body was shutting down and that I was going to die. That was it - I was going to die because of asthma. It sounds crazy but sadly over 1100 people do die from asthma every year.

However, a month later they heard of a new treatment - Xolair - that might help me. My local MP, my GP, my mum and the charity Asthma UK had to lobby for funding but they succeeded and later that year I started having the Xolair injections. I was worried because it was a new drug and hadn't been widely used before but it was literally the last option left, a lifeline, so I had to take it.

By that point I didn't expect it to work, I had given up on any kind of life for myself. But three months later I started to notice little things; I was able to walk more easily without getting breathless, I didn't need my inhalers as much and I hardly needed to use my nebuliser (a devise that helps me to breathe) at all. The doctors were so impressed that they reduced my steroid dose down from 40mg to 7mg per day and amazingly I haven't had an asthma attack since I started using Xolair.

Five years ago I was isolated, stuck at home in bed, waiting to die. Today I'm speaking to you from my house, sat looking at my wedding photo. It's next to my degree in Social Work that I was able to get from the University of Nottingham, and next to that are frames of photo collages of me and all of my university friends. Now I've lost two stone my confidence has rocketed. It feels like I'm looking at a different person to the Sophie from 2007; this time it's the real me, not my asthma, and not the Sophie who had to apologise for herself because of the way she looked or felt.

It feels like an understatement to say that Xolair has given me my life back so when I heard that NICE, the body responsible for deciding what drugs the NHS will provide, want to stop future people with asthma having Xolair the bottom fell out of my world. I'm ok, in that I will still be able to continue taking it, but I know there are people out there like me, like the me from five years ago, and knowing that this decision could effectively tear away the only lifeline they have left is unthinkable. NICE doesn't think Xolair is cost effective - but what value can you put on my life and the lives of other people like me.

I am begging Novartis, who make Xolair, to speak to NICE and the Department of Health to find a way to make Xolair affordable so that people like me can continue to benefit. I would not be here today without this life changing drug - the least I can do is to use the fact I am here to ensure that other people can get access to the treatment I had.

If anyone wants to share their experiences I urge you to contact Asthma UK who are collecting these stories to lobby for a change in this decision. Or you can submit a response to the NICE consultation directly here. There is still time, the consultation closes on 30 November and NICE won't give their final report until early in 2013. Please help us to change the future for people like me while we still can.