The harsh reality of withholding enzalutamide – from the men who know

If you haven’t already read about the latest nonsensical decision from NICE on the life-extending drug enzalutamide, I’d urge you to read Drew’s blog about why NICE have got it wrong. If you can make sense of their decision, you’re a better man than me.

Thankfully, our push to get men and women to comment on the NICE public consultation is cracking on a pace, and there’s still time to register your views. To help give a full picture of why we’re fighting NICE’s decision, I’ve asked Sandy Tyndale-Biscoe and Hugh Gunn from Tackle to write a guest blog about their views and experiences of this drug and NICE’s controversial decision.

Sandy

I’m the chairman of Tackle prostate cancer, the working name of the Prostate Cancer Support Federation, which is the umbrella organisation for over 60 patient-led support groups. Hugh is the Treasurer, and we’re both prostate cancer patients. Tackle is the voice of 10,000 patients across the UK.

The reason we’re taking up space on Owen’s blog is to highlight the cruel and unacceptable volte face by NICE in its recent announcement on the drug enzalutamide. Back in October, NICE, who had been evaluating the drug for 12 months, issued a draft assessment which looked set to approve its use for men whose cancer was progressing after they had had chemotherapy. Based on this, many men who were failing to respond to abiraterone, were told: “just hang in there, enzalutamide will be approved in the New Year, and you’ll get another chance.”

Then, in early January, came the bombshell. Without warning or discussion NICE threw in a new restriction: no enzalutamide for men who’d had abiraterone, thereby excluding a large proportion of the very men for whom the drug was developed. Outraged, we protested. Quite strongly. By not discussing it they had broken their own rules. Shamefaced, they re-opened the consultation. But this cruel caveat is still on the table. We have until mid-March to make them change their minds. Our representative at the NICE meetings is Hugh, and he’s bound by confidentiality rules, but here’s his story.

Hugh

I was diagnosed with advanced prostate cancer at the age of 59, in December 2005, with a PSA of 760 and bone metastases all over my skeleton. I was given 18-30 months to live. Not being the sort of man to take things lying down, to prove them wrong, I took part in the Nottingham half marathon. Every step was agony and my time was 2 hours 49 minutes. Not very good, but I did it and proved to myself that there was a lot of life to live.

The half marathon got me involved with my local support group in Leicester, PROSTaid, and changed my life. I made lots of new friends and more importantly began to learn about this nasty little being which is inside me and trying to kill me. My Zoladex hormone treatment lasted for five years and then I was put on to a trial of docataxel chemotherapy and zolodronic acid for my bones. I still have the zolodronic acid and my skeleton is fine.

The benefits of chemotherapy only lasted about two months and after a battle with a rapidly rising PSA, I was one of the first patients to be given abiraterone. This worked really well, but after about 9 months, it was affecting my liver so I had to come off it. Life was bleak, I thought that this was the end.

But it wasn’t the end. At the time, enzalutamide hadn’t yet received its UK licence and the manufacturers were giving it free of charge to patients for whom abiraterone had failed, and I was put on it. That was 14 months ago. My PSA is steady at less than 1ng/ml, and I am fit, living a normal busy life, and, above all, fighting NICE’s cruel decision on the drug that’s keeping me alive.

What NICE has done is to pass enzalutamide for use, but made it effectively unusable. Nearly everyone who needs enzalutamide at the moment, has been given abiraterone and unless the caveat is taken out, they’ll have nowhere left to turn.

I was very lucky to be in the right place at the right time; many others are not. What is going on? NICE must not be allowed to get away with this.

Everyone who cares about this is urged to sign the petition set up by Prostate Cancer UK and supported by Tackle. Please visit prostatecanceruk.org/challengenice and take action now!

3 thoughts on “The harsh reality of withholding enzalutamide – from the men who know

  1. Another case of the NHS and NICE saving money at men’s expense

  2. Give men a chance in this country instead of supporting others, some of whom have never worked. Hugh has worked extremely hard and paid his taxes and deserves this chance. Many other men are in the same position as Hugh. Give them a chance too. Only yesterday a friend of ours died from prostrate cancer. Yet another hard working man!

  3. You give millions to non deservers, both in this country and elsewhere, back nonsensicle wars, tyrants and those robbers under the name of EEC but when it comes to looking after those in your own sphere, faceless names make errational decisions for the saving of a pence – wake up and reconsider – bet you would if it were YOU.

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