Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine Glioma. The only option for this aggressive cancer on the NHS is radiotherapy which may reduce symptoms for a few months. Two year survival is less than 10%. It is difficult to think of anything more devastating for a young family.
But the family of Billie do not want to give up – quite understandably. And they are trying to raise £200,000 to send Billie to the Burzynski Clinic in Texas that claims success with many forms of cancer. To help in this aim, comedian Peter Kay announced on Channel Four last night that he was holding fund-raising gigs this week to help Billie get the treatment that may save her life. As he said, “I just couldn’t not do it”. Enlisted to help raise the funds in many ways are a group of performers, including Badly Drawn Boy, Michael Bublé, Cheryl Cole, Gorillaz and Radiohead.
The fund raising web site, The Billie Butterfly Fund, describes the family’s hope in the Burzynski clinic. We are told that Billie has already travelled to America for preliminary treatment and that now she “has been accepted for pioneering Antineoplaston Therapy at the Burzynski Clinic in Texas which has been conducting FDA (US Government) clinical trials”.
Antineoplaston therapy specifically targets cancer cells without harming healthy cells. Each patient has a personalised treatment plan determined by medical history and extensive analysis. Typically treatment lasts for 8-12 months.
In order to be ‘accepted into the trial’, the family need £200,000. But there is hope,
Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.
It’s a compelling media story – a dying young girl, an NHS unable or unwilling to respond, generous celebrities and a hugely expensive and pioneering cancer clinic in the United States. But scrape away at the surface story and there is something much darker – and that story needs to be told and myths dissipated.
The Burzynski Clinic is at best described as ‘controversial’. There are many warning signs given out by the clinic that are typical of cancer quackery, and so great caution is required.
Let me list some of my concerns,
- Burzynski is a ‘lone genius’. Great scientific medical cures rarely stem from single individuals. They are the result of collaboration and teams. Such breakthroughs need to be assessed by peers to ensure that the researcher is not mistaken or overstating their case.
- Burzynski is claiming he has found the ‘cause of cancer’ and his antineoplaston therapy is its cure. Cancer is a name given to many different diseases. There is not a single cause and treatments need to be targeted as specific forms. It is a common quack claim that they have found the ‘single cause’ and they have a ‘unique cure’.
- The ‘cure’ – Antineoplastons – which were extracted from urine (yes – its the piss treatment) – has no good independent peer-reviewed RCT evidence suggesting it is effective.
- Consequently, the treatment is not approved by US regulators. However, it is approved if treatment is part of a trial.
- The Burzynski clinic charges hundreds of thousands of dollars for people to enrol themselves in a trial.
- These trials of this ‘new and pioneering treatment’ have been going on for decades – since 1977. No end appears to be in sight.
- The website Quackwatch has raised concerns about the origin of Burzynski’s claimed PhD.
So, there are many reasons to question this treatment and to wonder if it is anything more than the misguided obsession of lone doctor who might best be describes as a maverick.
Many people appear to have had deep concerns about the practices of this clinic. Dr Stanislaw Burzynski has been on trial for cancer fraud. He is not a stranger to the court room. In a trial in 1997, he was acquitted after a hung jury was unable to convict. An anti-health fraud organisation, NCAHF reported that interviews with the juror’s suggested they felt he “was guilty as charged of violating court orders not to distribute his unapproved “Antineoplastons” in interstate commerce”, but that due to the strong emotions of some of his patients, who believed in him, some jury members felt unable to convict, despite the judges warning to ignore such emotions.
Support for Burzynski appears to be very strong amongst some of his patients. But as NCAHF say, “Trial by placard waving emotion is a form of mob rule.” Burzynski, his supporters and the media are able to cherry pick those cases that appear to have done well with his treatments. Living patients can be strong advocates.
But those who die are silent. Earlier this month, an Irish newspaper reported the tragic story of Zoe Lehane-lavarde who also had a media campaign running to raise money for treatment at the Burzynski Clinic. The report says that Zoe ‘responded well to treatment’ at the clinic. She died, aged 18 months, a few weeks ago.
The case reports that are relied upon to show successful treatment are by their very nature one sided. They ignore the voices of the failures. That is why properly controlled trials are so important, independently peer reviewed. They are sadly lacking with this therapy. We cannot know if the ‘successes’ are small or large in number, or if the successes are due to the new treatment or some other factor. Cancer affects people in many ways. Some live for many years despite many others dying quickly.
Dr Stanislaw Burzynski faces more problems. It appears that the Texas State Medical Board are holding a hearing next April to revoke his medical license. The response from his supporters is huge with campaigns to write letters to Governer Rick Perry. There has also been a movie made in order to support him as he goes on trial – Burzynski the Movie – which you can buy or rent – yes buy or rent – on Amazon, Netflix or Lovefilm. I hope none of the money from his patients has been used to make such propaganda.
I fully anticipate getting lots of comments from his supporters here. Do a twitter search for #burzynski to see the passion. It also appears that threatening letters are being sent out (text here) to bloggers who question his treatment. That is not the action of someone who seeks the truth but of someone who wants to silence debate. Such attempts to silence cannot be seen to be in the best interests of patients but look more like the attempts to protect commercial interests.
The Observer should not have published an article that was so uncritical of such a questionable treatment. (You can write to the readers’ editor at email@example.com). Such articles will encourage others to go down this misguided path. You may argue that such a treatment gives the family hope, even if it is not effective. It may do. But it looks as if this will be a false hope – and false hopes rob people of real choices. The Bainbridge family are in the grip of utter tragedy as the mother is also suffering from cancer. There are undoubtedly many ways that £200,000 could help them, but putting a little girl through dubious, risky and unpleasant treatment, that is exceedingly unlikely to help, is not one of them.
The treatment is not without its consequences. The article in the Observer describes what is going on,
Billie has already started the clinical trial. She went to Texas for a month, six weeks ago. She was able to come back and bring the treatment with her. She has a backpack with the treatment in it and a Hickman line going into her chest which administers this liquid every four hours. She has not been eating since she has been on the treatment so she also has to be fed through a tube – milkshakes and protein drinks.
False hope takes away opportunities for families to be together and to prepare for the future, no matter how desperately sad that is. It may make the lives of those treated more unpleasant and scary. (Antineoplaston therapy is not without dangerous side-effects). It exploits the goodwill of others and enriches those that are either deluded, misguided or fraudulent. It may leave a tragedy-struck family in financial ruin afterwards. Giving false hope may be more about appeasing the guilt and helplessness of ourselves rather than an act of kindness to the sick.
The Observer article talks about how Billie’s uncle has had his ‘cynicism melted away’ by the generous acts of people like Peter Kay. It appears to me that the success of the Burzynski clinic does not depend so much on published robust evidence (he has had decades to produce this) but on human kindness and goodwill. The blogger Orac describes how the Burzinski clinic has been relying on “harnessing the generosity of strangers” for years.
Orac sums it up,
The bottom line is that Dr. Burzynski is not a miracle worker. He is not a doctor who sees something that mainstream science has not and who therefore has a cure for many cancers that mainstream medicine scoffs at. He is not a bold visionary. Rather, he appears to be a man pursuing pseudoscience.
I understand how Peter Kay must feel when he says “I just couldn’t not do it”. We are compelled to help in such tragic circumstances. But I fear that in this case, such help will do more harm than good as others are drawn down this path. As always, people take claims on face value – a clinic that claims to help when others won’t or can’t. There are places that celebrities can go to to help ensure the science is sound, such as the charity Sense About Science, who welcome enquiries of this sort from people being asked to endorse claims.
Peter Kay is right to raise money for this family. And good luck to him. But it would be a dreadful wrong for this money to end up in the hands of someone whose actions cannot be distinguished from mere exploitation of the desperate. That money could make a big difference to this family. It could allow both mother and daughter to be looked after in comfort, without worrying about mortgages or jobs. It will allow them to be together. It will not perform miracles. And nor will it make the pain go away. But such a simple gift will indeed be an act against cynicism and false hope.
24/11/2011 The Burzynski Clinic Threatens My Family. In which this post gets a response from the clinic.
5 June 2012 Billie Bainbridge died with her family on the 1st of June.