Some after thoughts from the debate…..

I was just thinking whilst driving into work this morning about how Cancer Patients seem to be ignored by politicians when it comes to setting policy, especially around the subject of NICE and the selection of drugs. Why do we get ignored? Well I guess they feel that we’re too emotionally wrapped up in the topic to see clearly.

I can see the logic in that argument, however I track myself back to where I was just after my diagnosis and how I felt about NICE then. In fact I even wrote a blog defending their position stating that somebody has to make the hard decisions around cost and what should be allowed and what shouldn’t. I think from memory I even went as far as to say it was a good thing. So, there you have it, I actually used to defend the arguments that both Prof McCabe and Dr Evan Harris talked about at the Lib Dem fringe discussion…. Yikes!!

And then it struck me, that’s the problem; they are not close enough to the human aspect of this to see what’s really going on. As a patient (or survivor) I suppose I get to see things differently now, I get to see that day after day people die from this disease and yet nobody, seemingly, does a thing about it, they just wave “Qaly” in our faces and say “sorry, somebody has to suffer, it’s a balance you see”, or they say “it’s not a governmental issue, it’s NICE and the PCTs”. It leaves patients with nowhere to turn.

What they fail to see, (and I’m sorry to say patients do have some expert knowledge of this as well, because they have to gain it), is the sheer waste that goes on, they don’t see that there is a huge disparity between who gets treatment and who doesn’t. The sad fact of the matter is that Kidney Cancer is seen as a rarer cancer, despite it being the 8th most prevalent in the world. It tops Leukaemia and Cervical Cancer and yet both these have a higher presence/ priority, and because of that treatments are made more readily available.

Balance and fairness, that’s all we ask for. From the outside looking in it seems fair and rational because it’s explained in such a way to make it seem so ….. smoke and mirrors, but from the inside, boy, it’s a different story. Watching families struggle and fight, making patients go through endless battles with their PCTs and NICE to get drugs they know (and their oncologists know) will give them extra time. Extra time to spend with their loved ones, extra time to work, extra time that may lead to a cure. All these things matter.

This is not an attack on Dr Evans or Prof McCabe, it’s not deliberate on their part, and I enjoyed being on the panel with them,. My plea is that they start digging a little deeper than political rhetoric and statistics and look closer at the balance they profess to be looking at. Look beyond at the waste that’s rife in our government and surrounding agencies (and I mean really look). Look at how the drugs are approved, at how closely linked it is to public, or worse, political pressure. I don’t really see a scientific or statistical analysis going on, what I see is…. “if pressure is applied it will be approved”. A good example is our own Kidney Cancer pressure group last year that had to barricade the NICE headquarters to get heard, and guess what? we were heard because enough pressure was brought to bear.

So, are we part of the problem? I suppose we are, but until they get the balance and fairness right we wont stop!

Posted under Andy Thomas, Cancer Drugs, General

2 Comments so far

  1. rose woodward October 8, 2009 10:23 pm

    You just nailed it Andy – and you’ve made me shed a tear !!!

    Rose- your fellow aging activist !! xx

  2. Sarah Raber wife of Tom November 2, 2009 2:51 am

    Andy,

    The networking that those of us do on the internet….those of us that have been invaded by kidney cancer….is mostly a blessing. However, I read of patients who have gotten a wonderful drug, just for OUR kind of kidney cancer from a clinical trial, which has shrunk her cancer by 50%, and she’s “stable”….well, it just makes me crazy!!!

    I want the drug too…for MY husband! Why is it taking so LONG??? Can’t WE make the decision to just TRY it too??

    So…I go to the drug makers web sites, and do you know what I find…FIRST off…right out of the box??? Hugh???

    Their STOCK values!! How the drugs they have in their R&D pipelines, are boosting their STOCKS in the markets!!!!

    The pharmaceutical company who’s drug we are currently on, which REALLY ISN’T FOR OUR KIND OF CANCER CELL…they charge $24,000.00 for four weeks of the pill. 48pills…~$900.00 per pill! I’m assuming the insurance company have an “arrangement” with them for the balance, after we pay our measly $65.00 co-pay.

    How much “strategy” is in the hype and spinning of the “new” drug in the pipeline? Our pills pharmaceutical is buying out another one…toward making a monopoly. Of course, THAT doesn’t enter the mix at all, now does it.

    If it weren’t that the lucky patient, who got the new clinical trial drug…lives in my own state, and I talked to her on the phone….I probably wouldn’t have gotten my hopes up so!

    But she has had amazing results, and knows others in her trial, who did too…and I want my husband to be able to at least TRY it.

    I’m strapped with a full time job, in order to be able to keep my insurance for my love, because his won’t cover it. I should have been retired by now, enjoying the time, whatever it is, together, instead of working five days a week.

    I’ll keep fighting…I don’t know how to do otherwise.

    Sarah

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