Lib Dem Conference Fringe Debate on End of Life Drugs…..

I had a great time the other day at the Liberal democrats party conference.  I was invited to sit on a panel to discuss “End of Life” drugs and how N.I.C.E. decide on who should and who shouldn’t be given these drugs.

The panel consisted of Myself as a Kidney Cancer patient, Dr Evan Harris as the Lib Dem MP,  Prof Chris McCabe – Chair in Health Economics at the Leeds Institute of Health Sceince and Mike Hobday, Head of campaigns, Policy and Public Affairs for Macmillan Support.

It was such a shame that there wasn’t more time to get a real debate going, but it seemed that no sooner had we started than it came to an end.  I think all of us on the panel (including me) spent too much time on our opening remarks which left little for questions and answers.

I ended up feeling a bit militant to be honest.  I sensed that the actual patients’ voice is really dissregared in these matters, but I hope I held my own.   My own personal view is that N.I.C.E. add little or no value and are far too driven by cost than they are anything else.

Prof McCabe came up with the ususal “it’s all about balance”, saying that if they allowed the more expensive Kidney Cancer drugs such as Avastin, Torisel and Nexavar that something else would haev to be denied elsewhere.  yeah, yeah, yeah… heard it all before, it sounds like a sensible argument until you look at the waste across the NHS system. 

I brought up the huge waste in the National Program for IT, the fact that in gerneral nobody really wants much of what it proclaims to offer.  Cut this area and you free up money to deliver drugs and treatment to the patients.  The trouble is, if you argue this as a patient you get acused of broadening the debate too much.  Well, you have to broaden it to get people to see sense dont you?

Dr Harris talked about efficiencies, and I suppose I partially agree with this, but there was no real meat behind the statements, no addmission of where those efficiences would come from, and he also defended N.I.C.E’s position way too much for me.  It didn’t like the fact that I’d suggested N.I.C.E should hang their heads in shame for what they have done and how cruel they’ve been.  He even suggested that campaigning was not what we should be doing, we should be lobying our MPs (been there, tried it… falied).  He was also very unclear as to where the responsibilty lay.  One minute he said MPs should only set budget and NICE should make the decisions… next minute he’s asking me to lobby MPs.  Well if MPs aren’t allowed to interfear (in his words) then what’s the point?

At one point an Oncologist stood up and defended Dr Harris by saying that without NICE she would not be able to freely prescribe drugs, to which I replied “had we not campaigned outside of NICE HQ last year you would not have the drugs available to you to prescribe “, so I’m sorry Evan campaigning and pressure groups do work, government does not.

Mike Hobday argued for a more fair balance between the more well known cancers and rarer cancers.  The balance tips far too much towards the more well known ones.  My guess is that this is because of public pressure and visibility, which is hardly the way an organisation such as NICE should behave.

For someone who hates public speaking, I enjoyed it.  Just wished it had been longer so we could get the topics out on the table.  Maybe next time .. (if I get invited back that is)

Posted under Andy Thomas, Avastin, Cancer Drugs, Events, Nexavar, Sutent, Torisel

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