CANCERactive: non-collaborators!
Poor Judgment
Against my better judgment, last October, I was persuaded by my PR daughter, Georgie, to put our charity CANCERactive up for membership of the CCG - the UK Cancer Charities steering group. It seemed a pretty good idea at the time after all shouldn’t there be a member steering patients towards the research information available on vitamins, complementary therapies, energy therapies and the full width of possible cancer causes like chemical toxins in home products or EMF’s, or the dangers of cocktails of drugs, or the limitations of mammograms or PSA tests?
Anyway, you get the idea those minor things that seem to escape the notice of existing mainstream cancer charities. Just look for EMF’s on a UK mainstream cancer charity site, or ’Environmental toxins’ and you’ll see what I mean.
So I sent in an e mail telling them about our charity, saying who we were, our defined aims etc etc. The secretariat wrote asking me to provide further information prior to the committee meeting to ratify (or not) our application. However, their questions seemed rather strange.
For example, they wanted to know if we were a charity. Now I know I’ve only got a degree from Oxford University, but even I have worked out that you have to be a charity to join a steering group of cancer charities. And also I did state this in my first e mail. The omens were not good.
No Vested Interests
Then there was the question: Did we receive funding from Pharmaceutical companies?
I have been asked a few questions in my life but this does not come very high up on the ’sensible list’, ranking alongside perhaps asking the Pope if he receives any funding from Osama Bin Laden. Notwithstanding our strong ’No Vested Interests’ stance to support our independence and objectivity, as a Charity we publish accounts for all to see. It’s all in there (or not, as in our case!) They further asked if any of the companies selling products on our shopping trolley funded us. No, we derive a little income from the profits, as any retailer could.
So, no slush funds, no hidden payments, no vested interests at all. I was starting to feel a failure.
Implied Criticism
Then came another hint of trouble: Did I realise that on our web site we actually criticised some of the other cancer charities on the Committee?
Err.. Our very existence is a criticism of other charities.
We set up to fill two gaps we felt were not being addressed fully by existing charities - like prevention. Which of the steering committee charities is warning people of the research findings on EMF’s, or toxins in toiletries, or dairy? And Complementary and Alternative Therapies - which of their charities is telling people of the clinical trials and research supporting meditation or acupuncture and so on?
Sadly, the gaps are still there. Not criticism, so much as the truth. The problem is that CANCERactive would not exist if there had not been ’short comings’ in the existing cancer charity information available to people in the UK. And, judging by the e mails and letters we receive, the public is increasingly understanding of this.
But perhaps they didn’t mean that. Perhaps they were concerned that we made specific criticisms of certain charities - like when we told our readers that we were not allowed into the Christie Hospital, Manchester Information Centre because the Cancer Backup information person had rejected us. At the time we even wrote to the CEO of (what was then the old) Cancer Backup and she would do nothing. When we printed the story, we received a letter in ’legal speak’ from Cancer Backup saying we were implying that the charity came between patients and information. I replied that I was not ’implying’ this at all. I was ’saying’ it - and I could back it up with all the correspondence, if required. Nothing further was heard. (Readers in Manchester will be pleased to note that two enlightened Christie Doctors receive their own supplies of icon, having asked us to supply direct, as do a couple of nearby libraries. And Macmillan have taken over Cancerbackup, so their attitudes to complementary therapies would be expected to change a little).
However, I’m nothing if not fair-minded (it’s the Libran in me). Having been criticised for criticising, I did make it clear that if any of their members would like to detail where they felt they had been criticised - and provide the information to show that it was inaccurate or unjustified - I would correct such wrongs immediately. However, we have received no reply about this and no such list.
Rejection
Now I have to cope with rejection. Sure enough, just as night follows day, we have received an e mail saying that our ’application has been rejected’.
Subject: RE: Application
Dear Mr. Woollams,
The CCG Steering Group has now reviewed your application and has decided that CANCERactive does not meet its agreed criteria for membership.
Following full consideration of the answers which you provided to the Steering Group’s questions, it was decided that CANCERactive would not be prepared to work constructively in collaboration with other CCG members within the spirit necessary for an effective coalition.
We would like to take this opportunity to wish CANCERactive every success in the future.
Best wishes,
The CCG Secretariat
Now let us look at this in a little more detail:
’It was decided that CANCERactive would not be prepared to work constructively in collaboration with other CCG members’. Unbelievably bizarre really. One week they don’t even know we are a charity. Two weeks later they know what is in our minds and what we are, and are not, prepared to do in the future! I don’t even know what we are prepared to do next week. That’s the fun of being an enfant terrible.
Then we ’don’t meet their criteria’. Which ones?’ I mused. We are a charity, so it can’t be that criterion. Perhaps it’s the ’No Vested interests? Maybe we should have some? Short of finding a big Pharmaceutical company to pay us lots of money, I can’t think what I can do about that. (My offshore Bank account number is available on request US Dollars only, pounds are so passe.)
So I went back to them and specifically asked which criteria we did not meet. The answer was somewhat tautologous: The criteria which Cancer Active did not meet were "support and demonstrate a commitment to CCG goals and be prepared to work constructively in collaboration with other CCG members".
Who actually helps whom?
What of course is fundamentally flawed with this answer is that history shows that it is we who have been collaborative to date, and they who have not.
For example, apart from not being allowed to provide patients at Christie with a free copy of our information magazine icon, we have provided listings on our web site and in the magazine for people to access Cancerbackup, Macmillan and Cancer Research UK, with links to their sites. Despite a written request to each of them 6 months ago from our web designer, and contact with all from me personally, we receive no such links from them. Indeed, we are not even mentioned in Cancerbackup’s list of UK Cancer charities (in their leaflets or on their web site) a fact that I have written to them about. Twice.
We have even interviewed the CEO’s of some of these charities in the past so they could put their message in front of people with cancer and we will shortly be featuring Macmillan Cancer Support icon) However, sadly, the new head of Cancer Research is ’too busy’ to be interviewed for at least a year (according to their reply to us).
Furthermore, every week we receive Press Releases from these charities and we print them in the magazine where they are helpful and informative to patients. Yet not once has any of these charities picked up on one of our stories, for example on the problems of EMF’s, or toxic ingredients in household cleaners or toiletry ingredients like formaldehyde banned in some other countries, or mobile phones; or, on the positive side, the cancer-fighting benefits of resveratrol or isoflavones. Yet, we print all the research and clearly list the source, which is almost always from a top overseas medical centre. We’ve done the hard work for them. They also ignored our own unique research study on the lack of public knowledge on ways to prevent cancer.
Quackery
Now, as many of my readers know, I have a simple definition of quackery ’coming between a patient and information that could help them’. We’ve covered stories of bribery by Pharma companies on doctors to encourage them to prescribe a different drug, the inequality of a system that rejects natural vitamins, whilst allowing synthetic drugs to grow faster and less checked than American credit growth (with the result that illnesses and deaths from prescription drugs have trebled in the last 5 years), and the ’experts’ who claim complementary therapies are a waste of time, whilst ignoring properly constructed clinical trials on them.
Of course, a definition of quackery can depend on your point of view. We’ve been included in the past, by a Professor questioning my motives (my daughter died of cancer), pouring scorn on our claim of research-based information since one of our patrons was, in his view, ’not interested in research’ (I’m sure Professors Sikora, Howell, Powles and other patrons did not take kindly to that), and implying we were saying that the products on our shopping trolley were ’cancer cures’ (when we clearly say they are not, and our stance is that there is no single cancer cure!). This crap is still basically up on his schoolboy site.
As far as I’m concerned, we do not give people inaccurate research information on vitamin D or Herceptin. We do give people width we cover everything that can help from drugs to radiotherapy, vitamin supplements, energy therapies and exercise, just as many charities do in other countries. Look at the American NCI web site and you will see just how backward our leaders are.
If the Harvard Medical Centre says vitamin D kills cancer cells we will tell you. If the New York Presbyterian Hospital has clinical trials on the benefits of meditation, and the Henry Ford Centre in Detroit has Clinical trials concluding acupuncture is better than a drug we will tell you.
If UCLA say BPA is a carcinogen, we will tell you. If IARC says pesticide chemicals are carcinogenic, we will tell you. If the Cedars-Sinai researchers are concerned that the side effects of the PCV brain tumour drug combination widely used in the UK negatively affect too many people, we will tell you. If the MD Anderson Cancer Center, Texas says constructing an integrated therapy programme beyond the limitations of orthodox medicine improves survival, we will tell you.
We also openly say we are not perfect if someone finds an inaccurate statement, we will check it and happily change it, if wrong. We do this because we want one thing the best for the people who want to beat cancer.
And this could be a problem, I admit. We do not exist to please Doctors or Governments. We do not simple reproduce a drug company’s Press Release on their new wonder drug. We do tell people about the risks associated with radiotherapy and icon has been kicked out of two hospitals as a result. But what are we supposed to do? Lie? Down-play the truth? When even the Lancet has warned on the dangers? We even asked the oncologist concerned. ’What warnings do you give your patients?’ We wrote 5 times. No reply.
This is quackery. Coming between patients and research they need to know.
And I’m afraid that if the CCG don’t want us at their table, and do not cover issues such as these, it is hard to conclude that they are not falling in to my definition of quackery.
And that’s why the CCG is probably right to exclude CANCERactive, but for the wrong reason. We could never have been collaborators with the CCG charities and their business friends, because they could not be collaborators with us, as they have consistently shown to date. I am 100 per cent proud that we have no vested interests and we can tell the public the whole truth with all the supporting research on pesticides, or toxic chemicals or EMF’s.
From where I sit, the truth is that ’they are not prepared to collaborate with us in the spirit of helping people beat cancer’.
So, that leaves us with only one option - we can only be collaborators with the public the people who want to beat their cancer. And that’s fine by me.