New insight into how childhood brain tumours develop

Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all” Emily Dickinson


Note: we have edited this blog post to correct factual errors, and made changes to some of the language at the request of the family of a patient being treated at the Burzynski clinic. For transparency, these changes have been tracked.

We’ve recently seen an increasing number of stories in the media – such as this heartfelt piece in the Observer – describing how desperate cancer patients and their families are raising tens or even hundreds of thousands of pounds to go for treatment at the Burzynski Clinic in Texas, USA.

Many of us working here at Cancer Research UK have lost loved ones to this terrible disease (or, indeed, been through it themselves) and it’s what fuels our passion for the work that we do. So we have the very deepest sympathy with these families and understand the need for hope, however faint, in their darkest days.

Across the country, kind-hearted people – from local communities to big name celebrities – are understandably moved to raise money for these patients. But it is also important for them to know that the available scientific evidence does not support the clinic’s claims that their treatment (known as antineoplaston therapy) is effective against cancer. At the moment, Burzynski’s antineoplaston treatment has to be regarded as experimental and unproven. (Edited 3/12/11 KA)

And although we have no wish to extinguish the small flame of hope that these families carry, the current scientific evidence tells us truth is that the Burzynski Clinic’s treatment is not the miracle cure that the recent slick movie about the clinic would have you believe. (Edited KA 22/12/11)

There is nothing we want to see more than effective treatments for cancer, and to save families from going through the pain of losing a loved one to cancer. Some families may feel that a chance of a cure – however slim – is worth it, on the understanding that there are no guarantees. But we cannot stand silent while people are lured by promises based on an unproven therapy. (Edited 30/11/11 KA; Edited 5/12/11 KA)

What’s the evidence?

At the moment, there is very little solid scientific evidence to show that antineoplastons are effective at treating cancer, and virtually all the research in this area has been carried out by Burzynski and his team – a red flag to the scientific world (as we’ve discussed before).

To explain, scientists are not stupid – whether they work for independent organisations like a research charity or a pharmaceutical company – and they can spot a bandwagon rolling towards them from a great distance. Once the evidence starts to fall into place about the potential effectiveness of a discovery, it’s guaranteed that the scientific community will start to pay attention and jump on.

The fact that no other labs have managed to replicate Burzynski’s apparent success with antineoplastons or are interested in developing the treatment raises questions. The fact that there has been little outside interest in developing the treatment, and that few others have managed to replicate his apparent clinical success, raises questions. (Edited 30/11/11 KA)

As a case in point, based on Burzynski’s claims about antineoplastons, the US government-funded National Cancer Institute (NCI) spent nearly a million dollars on an early-phase clinical trial of the treatment in the early 1990s. But the early results were not promising and the trial ended in disarray – a saga documented in this fascinating social science paper.

Although neither Burzynski nor the NCI is entirely blameless in the collapse of the trials, it is perplexing that since then thousands of patients have allegedly been treated with antineoplastons, yet there is not enough data to make a solid case for their effectiveness. And – more importantly – based on the evidence presented by Burzynski, the vast majority of the scientific and medical community remains unconvinced.

As well as the doubts around the effectiveness of antineoplaston treatment, the whole manner in which the clinic is offering treatment is unusual.

Antineoplaston therapy is not licensed as a cancer treatment by the US Food and Drug Administration (FDA), so the Burzynski Clinic is offering the treatment only as part of a clinical trial. However, patients are being asked to pay many tens of thousands of dollars for the privilege of being on the trial – a highly unusual situation in clinical research, and certainly not the norm for UK trials.

Furthermore, the scientific community expects the results of clinical trials to be published in the medical literature. As far as we can tell, Burzynski’s team have not published any results since 2006, which raises questions about exactly what kind of clinical trials they are running, and when we might expect to see the detailed analysis of their results.

There is no conspiracy

We’d like to add a more general note on alternative cancer treatments. As we’ve discussed before, Cancer Research UK is often accused of being part of some kind of “Big Pharma conspiracy” when we report the lack of evidence for the effectiveness of alternative cancer treatments.

These accusations are offensive to all of our scientists, doctors, nurses, fundraisers and supporters, many of whom have lost people to cancer and want nothing more than to see this terrible disease beaten.

The truth is that these alternative treatments have not been shown to cure cancer, and those who say they do must provide credible scientific evidence to support their claims.

Also, it is not true that certain alternative treatments are being ignored by the pharmaceutical industry for financial reasons. The issues around what pharma companies chose to invest in are complex. But it’s not the case that ‘unpatentable’ cancer drugs or treatments are suppressed by the pharmaceutical industry.

For example, the drug aspirin has been out of patent for many years, yet it is currently being investigated in clinical trials for preventing cancer – experts believe this humble drug could significantly cut cancer rates. Furthermore, cheap off-patent drugs including statins and beta-blockers are also being investigated by our researchers for their cancer-fighting potential.

In addition, there are ways that companies can patent pre-existing or reformulated compounds if they show genuine promise against cancer, so they can make them widely available to patients on a commercial scale. And Cancer Research UK also works to secure rights to investigate and market shelved drugs or drugs for rare cancers that could benefit patients – so-called ‘orphan’ drugs – such as fenretinide for childhood cancer. (Edited for accuracy 25/11/11 KA)

If any of the so-called ‘miracle’ cures for cancer showed genuine, reproducible benefits for patients, they would be jumped on by doctors and scientists who are desperate to find better ways to treat the hundreds of thousands of people who are diagnosed with cancer every year in the UK. The fact that they are not speaks volumes.

We believe that we will beat cancer through scientific research, and the progress we’ve made over the years stands as a testament to the effectiveness of this approach. Survival from cancer has doubled in recent decades, and more people are surviving than ever before. For example, more than three quarters of children now survive cancer when back in the 60s only a quarter would make it.

Yet we are all too aware that we still have a long way to go. Cancer still causes more untimely deaths than any other disease, and it’s understandable that people will cling to any hope look at any option, however slender, when faced with a terminal diagnosis (edited 04/01/12 HS).

But we would ask people to stop and carefully consider the benefits of pursuing unproven experimental treatments. treatments that do not appear to be effective at treating cancer, despite the hefty price tag. (Edited HS 0401/12)


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