NICE, But Nasty.

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This report is from kidney cancer patient Bill Savage's and his first hand experience at the NICE review of the availability of four kidney cancer drugs.

Kidney cancer patient Bill Savage attended two reviews held by the National Institute for Clinical Excellence (NICE) as a ‘Patient Expert.’ These reviews were relating to the availability of four life extending kidney cancer drugs (Sutent, Nexavar, Torisel and Avastin) to kidney cancer patients and both were held in Manchester. The first review was held in June 2008 where the four drugs were rejected. NICE cited cost effectiveness.

This is his story about his latest trek to the North West for the second review:

I am a kidney cancer patient, fortunately not metastatic and though this report is written in a light hearted way it in no way disguises my anger at this inhuman, calculating machine funded by the government. The NICE experience has elements of pantomime and farce but this is deadly serious. I believe the NICE system is causing our country to fall behind the developed world in the provision of all kinds of medical provision –not just kidney cancer. I plan to work with The James Whale Fund for the better treatment of Kidney Cancer patients; a key component will be urgent reform of the NICE system.

My first meeting with NICE in 2008 ended in tears. I attended as one of three ‘patient experts’, their term not mine, where we sat through five frustrating hours of statistical mumbo-jumbo and we were allowed to speak for less than 5 minutes.... in total! The meeting consisted of three hours of interminable and incomprehensible PowerPoint slides full of statistics concerning clinical and cost effectiveness which were only decipherable by academic health economists or statisticians. The NICE committee chairman was ruthless in preventing full debate and we were dismissed from the meeting completely frustrated by this failure to consult properly. I complained about this sham consultation process up to the non-executive level of the NICE Board but it was like punching a pillow and my complaint was duly dismissed.

I resigned myself to watching the NICE machine grinding on-and-on as they ignored my requests to attend the next review. Then my mobile phone rang on December 9th with a manager from NICE inviting me to attend the January review. “with observer status” as their initial refusal had been “somewhat peremptory”. Amazed, I accepted requesting more details and heard nothing more for 3 weeks, so I complained. Now that I am good at! Finally they agreed to my attendance and the sweetener from N.I.C.E? It was to be held in Manchester and I had to meet my own expense!

Tickets were booked and diaries were cleared. My computer was deluged with another blizzard of NICE bumf –mountains and forests of undigested data designed to daze and confuse. However, I slogged through it and on the morning of the big day loaded with all the NICE papers, rose at 5 and caught the Virgin flyer London to Manchester arriving at 9 for a 9.30 start.

NICE are fierce but politically correct…….. I had been issued my strict instructions to be followed to the letter:

• Arrive 9:30 with accreditation and identity papers
• Briefing at 9:45 by NICE personnel about behavior protocol
• Join NICE committee at 10:00


We were not allowed to talk to the Committee - in the meeting room, in the toilet or at any coffee break. The role was as mute witness. Oh, and by the way, once again no lunch for the observers! This was only for the hard working NICE committee.

At 9.30 on the dot I entered Fortress NICE, to the security guards and presented my credentials and passport as proof of identity. They were taking no chances with middle-class fanatics like me. More observers arrived and we milled around fighting over the available chairs (no tables) in the NICE entrance hall. Who were these observers? I suggested to my fellows that we introduced ourselves to
each other. To my amazement the observers were:

• 10 representatives of the drug companies
 whose drugs were being reviewed
• 2 kidney cancer patients
• 1 patient with kidney failure.


The NICE story that this is a public meeting is simply fiction.

So, 9:45 came and went. So did 10:00 10:15, 10:30 and 10:45. My mind began to wander and I was reminded of the film “The Life of Brian” when the Roman ‘social worker’ centurion, played by Michael Palin, is gently encouraging the Christians into the Arena to be eaten by the lions. My centurions were the NICE ladies who were summonsed to listen to my complaints. Yes, they sympathised; “It won’t be long.” Yes, they cooed; “The dreadful facilities are the same for everyone because we are equally awful to everyone” and “Yes, we will escort you to the toilet but we will have to stand outside to make sure you don’t speak to a Committee member!”

So finally at 11:00, an hour late, we were ushered into the NICE committee room. Thirty-five NICE men and women were sitting around a huge oval table. They didn’t give us a second glance as we were seated cinema style in a corner. The Chairman made no introductions but grimly told us to behave and not to remonstrate or gesticulate! Then the torture began. Another 2 hours of deathly dull, barely digested statistics on cost and clinical effectiveness. The NICE thirty-five barely spoke –only four or five brave souls asked questions of clarification or interpretation for fear of risking the wrath of the Chairman who kept a tight rein on proceedings. Then at 12.45 the day’s biggest decision: LUNCH.

But not for we observers! We were duly ignored by the thirty-five as our NICE escorts shepherded us down the stairs out into the frosty Manchester afternoon with the NICE ladies imploring us to fill in the meeting form to say how much you enjoyed the ‘mute witness experience, I left confused about what was going to be decided . There were no clues from the NICE committee and as their decision will not be made public until March 2009 and then will not be implemented for months afterwards I remain as much in the dark as anyone .

As I said, I am very fortunate. I am not metastatic but don’t be fooled by my banter. This is a deadly serious business but with a really comic, farcical side. Our fate is being decided by this inhuman, government-funded calculating machine with a politically correct social worker face.

And this drives me on to continue to work with The James Whale Fund to reform this unaccountable and bureaucratic ogre. However, the most important task is to fight for the availability of drugs which have been licensed since 2006 and are widely available in the rest of the developed World.

Justice For Kidney Cancer Patients, NOW!!

Bill Savage.