Friday, 21 September 2018
This week’s blog has been written by Jerome Burne, health journalist and Trustee of Yes to Life. He discusses fake news around cancer drugs and why we should be wary…
Last week the BMJ published an article warning about the dangers of non-drug CAM treatments for cancer headlined: ‘Is cancer fundraising fuelling quackery? Nothing very unusual about that. As the trustee of a small but perfectly formed charity called Yes to Life that’s devoted to providing information about non-drug cancer treatments, I notice such articles, feel briefly irritated and then usually move on.
But this time I paused because the journal also carried another article that not only put the whole quackery allegation a new light but calmly revealed that all the UK national press had been engaging in mass Fake News exercise about something called the Cancer Drug Fund. Telling readers the exact opposite of the truth about the safety and effectiveness of the cancer drugs it dished out.
Behind its far more anodyne headline: ‘UK newspaper reporting of the NHS Cancer Drugs Fund, 2010 to 2015: a retrospective media analysis’ was a dynamite report that should lead to calls for resignations and hearings by the likes of the Commons Public Accounts Committee, although it almost certainly won’t.
It does, however, provide an explanation why the ‘quackery’ accusation gets so much support. If you have been regularly told how effective and a breakthrough the latest cancer drugs are, there is little reason to believe that the likes of vitamins or a change of diet could help. They must be a rip-off. It’s only when the true scale of the problems with the drugs become clear that alternatives can be seen as part of the solution.
Fund has been a 1.4 billion pound disaster
First a bit of background. The Cancer Drug Fund (CDF) was set up by David Cameron’s government in 2010 to make new cancer drugs that had been rejected, or not yet assessed, by NICE, available to patients on the NHS. It was wound up in 2015 and naturally, there was a report, published last year to find out whether this public health initiative, launched without any evidence that it was safe or beneficial, had been worthwhile.
One of its authors was Professor Richard Sullivan, director of the Institute of Cancer Policy at King’s College, London and senior author on this week’s BMJ study. His 2017 report made it very clear that the Fund had been a disaster. It had spent nearly 1.4 Billion pounds on drugs during the five years it had been operating, for virtually no clinical benefit at all.
As this week’s article says: ‘Many of these drugs did not offer any benefit with respect to prolongation of life or improvement in the quality of life … (there is) …little evidence that patient on the fund benefitted.’
Contrasting the claims of the quackery article with the dismal performance of the CDF is revealing. It reported that 8 million pounds had been raised on crowd funding sites to help people pay for their treatment for cancer with CAM therapies not available on the NHS.
Cancer Drug Fund and clear signs of quackery
This was warned against for several reasons: that the treatments were not backed by evidence, that they ‘may even do harm’ and that they could be exploiting the people donating money. The worry was that these sites had opened a: ‘lucrative revenue stream for cranks, charlatans and conmen who prey on the vulnerable.’
Exactly the same charges, however, apply to the CDF. ‘Not backed by evidence’: The setting up of the CDF was not supported by any evidence at all. In fact, its basic idea was to reject any evidence that the drugs were not effective or too expensive and pay for patients to get them anyway. That certainly set up a ‘lucrative revenue stream’.
One of the jobs of NICE (National Institute for Health and Care Excellence) is to look at the evidence for the cost-effectiveness and performance of newly licensed drugs to decide if they should be made available on the NHS.
So, the drugs CDF were handing out were ones that had already been rejected as duds or hadn’t yet been assessed. True those not yet assessed would have been licensed by the European Drugs Agency but, as explained below, nearly 50% of the cancer drugs passed by the Agency have no evidence of safety or effectiveness. This may also seem unbelievable but this what an analysis of new drugs by a different team at King’s college discovered last year. (More below)
382 fake news stories on cancer drugs in UK press
After the report on the CDF came out, something remarkable happened – nothing. An authoritative report had found that over a billion pounds had been spent on very expensive cancer drugs for no benefit and yet there was no call for enquiries about who knew what when. Instead, according to this week’s BMJ study, the UK press responded by engaging in a massive fake news operation. The coverage of the report by virtually all the national press made it seem as if the CDF had been a great success.
A total of 382 stories were written which took various angles. The top four most commonly used were:
1) The CDF is good but would benefit from being made available in Wales and Scotland not just England. 2) It is good but would benefit from more money. 3) It is good and is helping people .4) It is good but should cover more drugs. Just two of the stories were classified as: The fund is bad because the drugs are ineffective and have nasty side effects.
The study calculated that favourable reports outnumbered the negative three to one, commenting that ‘The drugs lack of effectiveness and range of unpleasant side effects ‘counted for little against human interest stories.’
A possible reason for this misleading and irresponsible coverage is that the CDF was the creation of the press in the first place. Many had run emotive campaigns based around personal stories of patients being denied ‘life saving’ treatment because a certain drug was not recommended by NICE. The government had eventually caved in and set up CDF in direct opposition to NICE which had been created precisely to make such tough decisions.
The assumption behind the both the newspaper coverage and the CDF was that patients should have access to drugs ‘no matter what the cost or the evidence for benefit’. This makes a mockery of claims that these drugs are all carefully tested for safety and effectiveness before being released.
Drugs licensed with no evidence of effectiveness
In fact, it soon turned out that the lack of evidence was even worse than the CDF report had revealed Another study, published a few months later found that the principle of getting drugs out to the public as fast as possible and regardless of cost was also being followed by the EMA (European Medicine’s Agency).
This investigation, published in the BMJ, into the benefits of 48 cancer drugs licensed in Europe and made available in the UK over a four-year period found that over half (57 per cent) entered the market without evidence of benefit on survival or quality of life.
‘These are the outcomes that matter most to patients and their doctors,’ said Dr Huseyin Naci, Assistant Professor in LSE’s Department of Health Policy and one of the authors of the study. ‘It is remarkable that so few cancer drugs enter the European market without any clear data showing they can have these benefits .’
And the drive for rapid licensing, an aim shared by pharmaceutical companies, was not limited to the EU. ‘Our regulatory system is broken,’ Vinay Prasad, Assistant Professor of Medicine at Oregon Health and Sciences University, told the BMJ. ‘We are approving cancer drugs at a rapid pace, yet few come with good evidence. Their marginal benefits from the rarefied world of randomized trials with selected patients can often be lost when they are used on a much wider range of patients in the real world.’
So it is clear that there is a wide and dangerous gap between the information about cancer drugs put out by virtually the whole press – Guardian and FT two honourable exceptions along with the BBC. This is obviously very favourable to the drugs companies and damaging to patients whose lives and safety the papers claim to champion. But it wasn’t just the press who were acting as cheerleaders for new drugs.
Can we trust cancer charities to tell the truth?
As Professor Sullivan’s current BMJ report makes clear: ‘Public organisation including the charitable research funders failed to publicise the shortcomings of the CDF.’ The report doesn’t make this point, but it seems to me that this is an even more serious professional failure. These are the bodies staffed by experts who are supposed to know what is going on. They raise millions of pounds a year from the public, so they can ‘beat cancer’. Yet the big charities failed to speak out. Who benefited from that? Not the patients.
It’s difficult to find a clearer description of why were should be concerned about the safety and effectiveness of cancer drugs than the picture painted by the ‘quackery’ article of crowdfunding for CAM treatments.
‘These reports may look like uplifting human interest stories, but they rarely highlight the dubious and pseudoscientific nature of some of the treatments. If the media want to report on medical fundraising stories, they should seek the advice of qualified medical experts.’ Unfortunately, it is difficult to know which medical experts are reliable.
Sunday, 16 September 2018
This week Dr Lauren MacDonald shares her beginner’s guide to meditation...
Still not sure about meditation? For a long time I didn’t think it was for me either – but last year, shortly after I’d been diagnosed with stage 4 cancer (and my anxiety peaked at a level I didn’t previously know it could reach), I realised I had nothing left to lose (and potentially my sanity to gain). I began a regular meditation practice and I haven’t looked back.
Whilst much of meditation derives from customs and philosophies associated with certain faiths (Hinduism and Buddhism in particular), the practice most people now view as meditation isn’t tied to one religion. And no matter what you’ve thought in the past – meditating absolutely DOES NOT require you to dress up in long robes and burn incense sticks (unless of course, that’s your thing). It simply offers an antidote to our modern lives – helping calm the mind, relax the body and achieve some much needed inner peace amidst the chaos.
I’m by no means claiming to be an expert on meditation, but what I do know is that my meditation practice helped me during a really tough time. Among several words that translate as “meditation” in the English language are bhavana from Sanskrit, which means “to cultivate,” and its Tibetan equivalent, gom, meaning “to become familiar with”. Essentially meditation helps us to gain a clear and accurate way of seeing things. Yet the practice of meditation can be very different every time. This was further highlighted during my month in India (check out my post on my yoga teacher training) where no two days on the meditation cushion were the same for me. And that’s OK – I know I’m on an evolving journey, one that I’d love you to join!
The toughest part of learning to meditate is by far during that initial “beginners” period. Meditation is supposed to teach us how to evade distraction and enjoy stillness – and yet the irony is that when you’re just getting started, sitting still for five minutes is just, well, distracting. If you’re keen to start a meditation practice, but have no idea where to begin, just follow these simple steps:
Pick Your Space
Most beginners find it easier to meditate in a quiet space at home, but as you become more comfortable, you can begin exploring new places to practice. I find meditating outdoors particularly peaceful.
Ideal sit cross-legged on a cushion or otherwise in a chair. It’s best not to let yourself slouch – but don’t get too focused on trying to sit completely straight either. At first, you may want to try sitting against a wall to support your back (I still do this occasionally). Use extra pillows under your knees or anywhere else to make you comfortable.
Set Your Timer
It’s probably best to start with five minutes and work your way up to 10, then 15, and eventually 20 (and beyond). It will probably take a while to increase the amount of time you can actively meditate. Be patient with yourself.
Relax Your Body
Close your eyes and scan your body, relaxing each body part one at a time. Begin with your toes, feet, ankles, shins and continue to move up your entire body. Don’t forget to relax your shoulders, neck, eyes, face, jaw and tongue which are all common areas for us to hold tension.
There are lots of different breathing techniques (or pranayama) used during meditation. However, a simple way to start your meditation is by focusing on breathing normally through your nose, with your mouth closed. All you need to do is notice how your breath feels in your nose, throat, chest and belly – as it flows in and out.
Try A Mantra
A mantra is a sound, word or phrase that can be repeated throughout meditation. Mantras can be spoken aloud or silently to yourself. A simple and easy mantra for beginners is to silently say with each breath “I am breathing in, I am breathing out.”
Still Your Mind
As you focus on your breath or mantra, your mind will begin to calm and become present, but sadly this doesn’t mean that thoughts will stop bubbling up to the surface. As thoughts arise, simply acknowledge them, set them aside, and return your attention to your breath or mantra. Don’t dwell on your thoughts. Some days your mind will be busy and filled with inner chatter, other days it will remain calm and focused. Remember that even if you don’t feel you are in the zone today, tomorrow might be a very different experience. Take the time to persevere beyond any initial frustration and enjoy your journey.
And remember – if you are still struggling to sit still, there are countless ways to meditate that don’t require complete stillness. Essentially “meditation” can mean whatever you’d like it to. If getting outside and running gives you a better perspective on something going on in your life, do it. If listening to cheesy music is cathartic for you and clears your mind, do it. Just find what feels good for you.
You can read more of Lauren's blog posts on her site, www.laurencara.com.