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Film: The professor who ‘cured’ his cancer with a cocktail of everyday pills and 20 years on remains disease-free

In the Telegraph today Ruth Wood writes about new documentary Surviving Terminal Cancer

From the filmmakers:

“This film charts the remarkable story of Ben Williams, professor emeritus of experimental psychology at University of California, San Diego. Diagnosed in 1995 with a lethal cancer, a primary brain tumour called glioblastoma multiforme, he was given just a few months to live.

But a natural born maverick, and rigorous scientist, Ben decided he would not go down without a fight. Nineteen years later his story is an inspiration to patients the world over, whilst his case is dismissed by the medical community as just one of a handful of statistical outliers.”

Watch the trailer

From the Telegraph:

ONE day, some two decades ago, Ben Williams set out from his home in San Diego, California, to cross the border into Mexico in search of acne tablets. The 50-year-old psychology professor didn’t actually suffer from acne. What he had was the deadliest type of brain tumour, a glioblastoma multiforme that was the size of a large orange. A leading neuro-oncologist from Texas had suggested that a skin treatment, called Accutane, might help him.

Prof Ben Williams was diagnosed with the tumour in March 1995. “The entire right side of my brain was infested with a tumour,” he recalls. “Apparently brain tumours as large and ugly as mine are a notable event. Soon half the neurology department had shown up to look at the scans.” He underwent surgery the following afternoon. However, relations with his neurologist soon became strained due to his dogged insistence on researching his own treatments.

His doctor wanted him to stick to the standard regimen of surgery, radiotherapy and chemotherapy. But the rebellious Harvard alumnus insisted on adding to this a veritable cocktail of drugs – in addition to the acne pills, there were blood pressure and insomnia tablets. All were cheap and had little or no toxicity, and for all of them Williams had gathered some credible evidence from scientific trials that they might reduce his tumour, boost his immune system and make chemotherapy more effective. But none had been approved in the United States for use in the management of brain tumours, so his own specialist had dismissed them.

“He said I would drive myself crazy researching all these things and that I might hurt myself,” recalls Prof Williams, whose story is told in a new film, Surviving Terminal Cancer, released online today. “I almost laughed. Hurt myself? I had the most aggressive kind of brain tumour. I was expected to die in a year. What did I have to lose?”

Even today the average life expectancy for patients with glioblastoma multiforme is just 15 months, with survival rates highest among young people. Fewer than 10 per cent of people aged 50 and above survive for five years. So it is against all odds that Professor Williams has just celebrated his 70th birthday and 20 years of clean MRI scans.

“I’d been told that my chemotherapy wouldn’t get rid of the tumour completely or indefinitely, so I focused on finding agents that might make chemo work better for me,” he says. Sure enough, after his fourth round of chemotherapy in 1996, Prof Williams’s tumour had vanished. It has never returned and thousands of people, including oncologists, have sought his advice since on ”beating” a cancer known in medical circles as “The Terminator”.

In mainstream oncology Professor Williams is considered a freak case and his strategy of fighting cancer “using every potentially efficacious agent I could lay my hands on” attracts suspicion. Yet a growing number of specialists and researchers say there is evidence that some of the common pills taken daily by millions for other ailments, could be ‘‘repurposed’’ to help in the battle against cancer.

“We just need to look in our medicine cabinets,” says Pan Pantziarka, scientist and UK spokesman for the Anticancer Fund, a Belgian non-profit organisation run by researchers and doctors. “There is strong evidence that some of the medicines we use every day have anti-cancer properties.”

At present, the pharmaceutical industry is using advances in our understanding of genetics to create so-called ‘‘magic bullets’’, a new generation of ever smarter, ever more targeted therapies. These act like snipers, interfering with specific cell proteins or signalling pathways that have a role in cancer. Major successes with this approach include the chronic myeloid leukaemia drug imatinib (Glivec) which blocks a protein that makes cancer cells grow and divide.

But, according to Professor Angus Dalgleish, Foundation Chair in Oncology at St George’s Hospital, University of London, many targeted therapies are eventually doomed to failure.

“Cancer will do everything it can to survive and avoid being hit,” he says. “It’s like a traveller who wants to cross London on the Tube. Yes, you could block him by taking out a major station like Oxford Circus, but he’ll just switch to a different line. It’s the same with cancer. After getting hammered by one agent, the tumour quickly reinvents itself through evolution. I always delay giving these targeted therapies as long as possible because I know they’re not going to be working a few months down the line.”

It costs more than $1billion (£650 million) to bring a new cancer drug to market and takes more than a decade. As drug companies face an increasingly uphill battle to invent new chemical entities that can be patented, they pass on the cost of a 90 per cent-plus failure rate, expensive trials and marketing to the NHS, insurance companies, healthcare providers and patients. Such is the spiralling cost that the Government now runs a separate £280 million-a-year Cancer Drugs Fund to shield NHS budgets – and even that is expected to overspend by £100 million this year. In January, the Government announced that 16 life-extending drugs would no longer be paid for by the Fund because of cost-cutting.

The good news is that early-stage laboratory experiments and clinical studies, as well as large scale epidemiological research point to the potential cancer-fighting properties of dozens of existing medicines that millions of people take safely every day for other ailments. Aspirin is the most high-profile example. Research funded in part by Cancer Research UK shows that it can significantly cut the risk of bowel, throat and stomach cancer if taken daily by people aged 50-65 (although the CRC warns on its website that aspirin can have side effects and should not be taken regularly without medical advice).

The Repurposing Drugs in Oncology (ReDo) Project, an international collaboration between the Anticancer Fund and US-based non-profit organisation Global Cures has identified 70 potential agents for which there is evidence of cancer-fighting properties. These include the diabetes tablet metformin, cholesterol-lowering statins, the antacid cimetidine, the de-worming tablet mebendazole, the anti-fungal itraconazole, and all the drugs Professor Williams took as he battled his brain tumour.

“Most modern cancer drugs are known as targeted therapies because they are aimed at very specific targets inside cancer cells,” says Dr Pantziarka. “But these older medicines are known as ‘dirty drugs’ because they have multiple targets, interfering with more than one protein or signalling pathway at a time. Used in combination, they could be very effective.

“If these medicines were coming out today, some would be blockbuster cancer drugs. But most are no longer covered by patents so the pharmaceutical industry has no financial incentive to investigate them.”

Even though these medicines are not officially labelled as cancer drugs, doctors are legally entitled to prescribe them “off-label” if there are solid grounds to believe they will be beneficial. Indeed, Lord Saatchi’s Medical Innovation Bill, which is supported by the Telegraph, aims to give oncologists (and specialists in other fields) more confidence to be experimental in treating terminally ill patients for whom all existing therapies have failed and who are prepared to take risks. But in practice, most oncologists are unwilling to prescribe drugs that have not passed final-stage (Phase III) clinical trials for a particular type of cancer, and even more wary of combinations that may interfere with conventional treatment or have unforeseen side effects.

Professor Dalgleish is one of the few UK doctors willing to think differently. “Say we have a patient who is fit and healthy in many ways but is going to be dead within months. If that patient asks me, ‘Is there anything else I can do?’ I will say, ‘Yes. The data suggests you could consider metformin which appears to selectively reduce glucose uptake by tumour cells as opposed to normal cells. I suggest aspirin to tackle your inflammation and let’s correct your vitamin D levels to boost your immune system.’

“I call it creative compassion because it’s not in the rule book and it’s what I would want for myself if I were in the same position. I wouldn’t want to just be told to go and see the palliative care person.”

Professor Justin Stebbing, of Imperial College London, the oncologist who treated actress Lynda Bellingham before her death from bowel cancer last year, agrees with the approach, though he tends not to prescribe off-label drugs himself.

“That’s not because I’m ethically opposed to the idea, but it’s not something I do every day so I’m not knowledgeable about dosages,” he says. “However, I don’t have a problem if patients get the drugs elsewhere and am open to referring them to trials that test these alternative approaches.

“As a profession, we can be cruel to cancer patients, giving them treatments that are horribly toxic with minimal benefits. I find it very frustrating when my colleagues are dismissive of patients who want to try other things that are non-toxic and may extend their lives.”

Professors Dalgleish and Stebbing are the co-authors of a study into “cocktail cancer therapy” currently taking place at the Care Oncology Clinic in London. Over the next five years, the private clinic run by biotech firm SEEK is aiming to treat more than 10,000 cancer patients with a combination of four ‘dirty drugs’ — statins, metformin, the de-worming drug mebendazole and doxycycline, a common antibiotic.

Gregory Stoloff, founder of SEEK, says it’s a non-profit trial funded by patients themselves, who pay £400 for the initial consultation, then £200 every three months to cover the cost of the drugs, consultations and the trial.

“Oncologists refer patients to us who have run out of treatment options and we put all of them on the treatment right away,” he says. Because nobody is given a placebo, this is not a controlled clinical trial. But SEEK hopes that treating thousands of people will create enough data to enable an effective comparison with cancer survival rates in the rest of the population. “Controlled clinical trials are all very well but when you have people who are expected to die within months they want treatment now. And these are very safe medicines that people have been taking for decades.”

Although Phase III clinical trials remain the gold standard for science, they don’t necessarily serve cancer patients well, says US campaignerDominic Hill, in whose film Prof Williams appears, along with oncologists researchers and other cancer survivors.

“Today’s lifesaving treatment for HIV [called antiretrovirals] is given to patients despite it never having passed a randomised Phase III clinical trial,” Mr Hill, whose brother-in-law Andreas died of a brain tumour in 2010, points out.

“How many cancer patients must die before the regulators recognise that this approach needs to be adapted to oncology?”

Dominic Hill’s film Surviving Terminal Cancer is free to watch onsurvivingterminalcancer.com

The Drugs in Question: the evidence for and against

Metformin: Several studies suggest that tumours grow more slowly in cancer patients who take this anti-diabetic drug. Early-stage clinical trials are investigating its potential to prevent various cancers including prostate, breast, colorectal and endometrial.

Statins: Preclinical studies suggest these cholesterol-lowering heart drugs may prevent various cancers and stop them spreading. One recent meta-analysis associated a daily statin with a significant risk reduction of liver cancer.

Mebendazole: There is evidence this drug – usually prescribed to treat parasitical worm infections — may inhibit cancer cell growth and secondary tumours, though no clinical trials have been completed.

Cimetidine: This over-the-counter antacid has direct anti-proliferative effects on cancer cells, inhibits cell adhesion, reduces tumour angiogenesis (growth of blood vessels essential to a developing tumour) and also boosts anti-cancer immunity in various cancers.

Itraconazole: The common anti-fungal treatment is also thought to be anti-angiogenic and has shown promise as an agent for prostate cancer, non-small cell lung cancer and basal cell carcinoma, the most common kind of skin cancer.

Isotretinoin: This acne drug, marketed as Accutane, is occasionally used to treat certain skin cancers and neurological cancers as well as to prevent the recurrence of some brain tumours, although some studies suggest it is ineffective.

What does Cancer Research UK think?

Professor Peter Johnson, chief clinician at Cancer Research UK, said: ‘It’s completely understandable that when faced with a terminal cancer, patients and their doctors want to explore every possible treatment option, but it’s important to balance the wish to do something against the problems such as side effects and false hopes.

“Cancer doctors in the UK are very innovative and often try new treatments if they and the patient feel this might be of benefit. The thing which sometimes prevents us from using different treatments is not our reluctance or a fear of being sued, but NHS funding. The NHS requires good evidence a treatment will work, which is why we carry out research trials, and more UK patients go on clinical trials than anywhere else in the world.

“Clinical trials are essential to find out whether new treatments are safe, if they are better than the standard care, and which patient groups will benefit. The only way to improve cancer medicine and show that a new treatment should be given to patients is by analysing trial results, which are scrutinised to make sure that they are ethically sound and scientifically valid. There are many different ways to do trials, but they all have the same goal: to find the best and safest forms of treatment. The people who take part in trials know that even if they themselves don’t benefit, they will help other people in the future.

“It doesn’t make sense for patients to withhold information from their doctor about other medicines they are taking. Many drugs, even those sold as natural remedies, can interfere with each other and the results can be very dangerous, or even fatal.”

Update on the Saatchi Bill

The Medical Innovation Bill, which would protect patients and doctors who want to try experimental treatments, is just days away from either becoming law — or becoming a footnote in the history of scientificadvance.The Private Member’s bill sponsored by Lord Saatchi has been debated four times in the House of Lords, tested and amended by Labour, Tory and Lib Dem peers and scrutinised and approved by doctors, lawyers and judges in the upper chamber. It is supported by both the Government and Opposition front benches. It is also backed by patients and their families – more than 40,000 have signed up as Medical Innovation Bill supporters.The Bill now includes a register that will see the results of all innovations recorded so they can be shared and used by other doctors and researchers. Having been amended and passed by the Lords, the Bill must now be approved by MPs in the Commons. But time is running out – Parliament has only weeks to complete its business before it is dissolved ahead of the May election. It is now up to the Government to find time for the Bill to be debated. If this does not happen the Bill will fall.

The full film has been released today online – Watch it here 

Medical Innovation Bill – adjournment debate

George Freeman during Bill Adjournment debate
George Freeman, MInister for Life Sciences, speaking during the adjournment debate

Yesterday December 10, 2014 Sarah Wollaston MP was granted leave to hold an adjournment debate on the Medical Innovation Bill.

The Bill team were also invited to meet Dr Wollaston earlier in the week to discuss the Bill. We thank her for that meeting and for requesting the debate.

During the debate Dr Wollaston raised several important points about the Bill, which could formally come to the Commons in early January.

The points revolve around patient safety and scientific rigour – issues which have been raised by senior doctors and lawyers in the House of Lords and which have been discussed with peers in committee and in bilateral meetings with Lord Saatchi, health ministers Earl Howe, George Freeman and Department of Health lawyers and officials.

On the back of these meetings, amendments have been laid which address the issues raised, and they will be further debated on Friday (December 12) in the Lords.

Edit: This debate has now taken place. Read here.

Chief Medical Officer Dame Sally Davies and NHS chief Sir Bruce Keogh, who has inputted into the Bill himself, remain satisfied that the Bill is robust, safe and will enhance, not hinder scientific research.

Summing up in favour of the Bill, Minister George Freeman said:

‘I want to close with some supportive quotes the Bill has received from a number of important people, lest the House should form the view that it is unanimously opposed, which is not the case.

 

Dame Sally Davies, the chief medical officer, has said:

“I am confident that, with the amendments made in Committee stage, the Bill is safe for patients and has the potential to encourage responsible innovation.”

 

Sir Bruce Keogh, Medical Director of the NHS, said:

“Encouraging innovation in medicine and protecting patients are both of vital importance. That is why I am pleased that amendments have been devised to address concerns about patient safety.”

 

Sir Michael Rawlins, president of the Royal Society of Medicine, said that the Bill will allow responsible innovation and treatment:

“I believe the use of the provisions in the draft Medical Innovation Bill will benefit patients, especially those with rarer diseases, and the furtherance of medical science.”

 

A letter to The Telegraph from 40 leading medical professionals, including David Walker, professor of paediatric oncology at Nottingham university and Riccardo Audisio, the president of the Association of Cancer Surgery, said the Bill

“legally protects doctors who try out innovative new techniques or drugs on patients when all else has failed. This Bill will protect the patient and nurture the innovator. It will encourage safe medical advancement, while at the same time deterring the maverick, thereby recalibrating the culture of defensive medicine. Finally, it will work with evidence-based medicine and provide new data that will inspire and support new research.”

I hope very much that that is the case and that when the Bill leaves the House of Lords, the vast majority of qualified senior opinion in this field is able to agree with it. It is absolutely our intention to support the Bill’s noble intent to promote medical innovation, but equally our intention is to not undermine in any way the Government’s commitment to patient safety or the duty of care that all clinicians share and owe to their patients.’

→Read: The full text in Hansard 

 

 

Guardian: ‘Saatchi’ law for use of untested medicines on dying patients ‘wins Hunt’s backing’

Guardian - Medical Innovation Bill
Guardian – Medical Innovation Bill

→READ: the full feature in the Guardian

A new law allowing dying patients to be treated with untested medicines has reportedly moved a step closer after the government gave its backing to the plan.

The health secretary, Jeremy Hunt, is throwing his department’s weight behind a backbench bill which will be debated in parliament this week, according to the Daily Telegraph.

Conservative peer Lord Saatchi’s medical innovation bill aims to give legal protection to doctors who try out different procedures or treatments when they have exhausted other options.

The legislation will have its detailed committee stage debate on Friday, and the Department of Health (DH) said Saatchi had tabled amendments adding extra safeguards to the bill.

The peer, who began campaigning on the issue after his wife Josephine Hart died from ovarian cancer, told the Telegraph: “In dealing with the deadly Ebola outbreak, the World Health Organisation has decided that departure from standard evidence-based treatment is fully justified and essential.

“It has set ethical guidelines for the use of new therapies and interventions – they are identical to the provisions of the medical innovation bill.”

When the bill had its second reading in June, Saatchi told peers: “All cancer deaths are wasted lives. Scientific knowledge has not advance by one centimetre as a result of all these deaths, because the current law requires the deceased receive only the standard procedure – the endless repetition of a failed experiment.

“The current law is a barrier to progress in curing cancer.”

It is understood that the DH is minded to support the bill, which would have to complete its passage through the Lords and then go through all its Commons stages before becoming law.

A DH spokeswoman said: “Innovation is at the heart of modernising the NHS and is essential for improving treatments and finding new cures and work on the medical innovation bill is ongoing. We are pleased that Lord Saatchi has tabled amendments to the bill to help ensure patient and staff safety.”

→READ: the full feature in the Guardian

What is the Medical Innovation Bill ?

The Medical Innovation Bill is designed to help medical doctors innovate new treatments and cures safely and responsibly for cancer and other diseases.


Lord Woolf
Lord Woolf

“At the moment, the doctor’s hands are tied – by concerns about professional reputation and potential negligence claims,” says Lord Woolf.

“That needs to change.”

Lord Woolf, Former Lord Chief Justice, former Master of the Rolls.

He was the first Lord Chief Justice to be President of the Courts of England and Wales.


Sir Michael Rawlins
Sir Michael Rawlins

“The Saatchi Bill will allow responsible innovation.” says Sir Michael Rawlins.

“From trying out things in individual patients, that can lead onto research and benefit thousands of other patients.”

Sir Michael Rawlins is Chair of Medicines and Healthcare Products Regulatory Agency, former chairman for National Institute for Health and Clinical Excellence (NICE) and President of the Royal Society of Medicine


Join our Facebook Chat TONIGHT at 8pm

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Health Secretary Jeremy Hunt has told patients in England and Wales that he will pass the Medical innovation Bill into law if the public tell him they want it.

Patients, doctors and lawyers have responded in their thousands telling him they want the Bill – and, crucially, why.

Officials at the Department of health tell us that it isn’t enough just to tick the ‘Yes’ box – they want to see reasons too. You have been telling him your stories, through the Change.Org response form which goes straight to the civil servants analysing the responses at the department.

Thank you for this.

Yet, we know that even though people want the Bill, there is a real danger that officials will remain unmoved. Don’t give them the option to ignore you. That’s why we’re holding this Facebook chat – to hear your stories, to inspire each other to respond, to tell civil servants who control the consultation that this is a democracy and that you want the Bill.

Join our Facebook Chat April 15th 8pm on our Facebook page: http://on.fb.me/1fOcOUG

But the Bill isn’t the only game in town – it is part of a bigger movement for medical innovation and the search or new treatments for so-far incurable diseases, like Duchene’s Muscular Dystrophy, for example. The Saatchi Bill Team has been working with Empower Access To Medicine, Harrison’s Fund, cancer charities, patient groups and many others to support each other as a community of patients and carers who want to see lives saved and changed for the better.

Empower Access to Medicine  wants to speed up access to new drugs therapies. At the moment drug trials and development take years. But patients who are dying don’t have time to spare. So Empower has persuaded the Department of Health to allow patients and doctors to use promising drug therapies before they have finished the full trials process.

It’s a great achievement.

James Hargrave, Empower says: “Both Empower: Access to Medicine and Lord Saatchi’s Medical Innovation Bill are working to put patients at the heart of medicine. Doctors must be allowed the space to innovate responsibly without fear or favour – but to be able to do this the drug development process needs to be fit for purpose so that there are innovative treatments for them to use.

“The time has come for medical regulation to match modern medicine.”

The Saatchi Bill will, if passed, support doctors who want to use such medicines early – by giving them confidence to prescribe them without the risk of being sued – as long as they get the consent of other senior doctors and the patient.

So, the Saatchi Bill is vital part of a bigger picture. The Bill alone will make a big difference. But in alliance with all the work and big campaigns by Empower and others, we will be unstoppable.

The consultation ends on 25 April. Don’t let officials say that you didn’t want the Bill. Please respond. 

Sign the petition: http://chn.ge/1pqY6lS

Join our Facebook chat tonight, April 15th, at 8pm on the Saatchi Bill Facebook page: www.facebook.com/SaatchiBill

 Sign the petition for the Medical Innovation Bill: http://chn.ge/1pqY6lS

 

Cardiff consultation: Answers to questions that came via Twitter

During the recent Department of Health public consultation meeting in Cardiff (18 March 2014) attended by doctors, academics and patients, we got some questions on Twitter we discussed.

Sean Kielthy – @LMKPartnership – in particular asked three questions which sum up what many others are asking.

Sean asked:

1. ‘Defining experts [in the Bill]. A homeopath may be an expert in their field. How do we stop them getting in?’

Answer: The Bill can only be used by qualified and registered doctors. The term ‘doctor’ is a legal one and homeopaths (for example) would not be protected by the Bill, if it became law.

Basically, you have to be a legally-recognised doctor. If not, the Bill doesn’t cover you.

2. ‘How do we keep the quacks out? [I want] science-based medicine only’.

Answer: Apart from the answer above – that you must be a doctor to be covered by the Medical Innovation Bill – you must also get the agreement of a panel of medical experts and other doctors before you offer a new treatment to the patient.

It is inconceivable that a quack doctor, treating a terminally ill patient, who comes up with a crazy ‘snake-oil’ treatment would get the support of a panel of other senior doctors.

To get agreement, the doctor will have to produce evidence or coherent reasons and a theory as to why the new treatment is worth considering.

The supporting doctors will be named as part of the sign-off process. At the moment, it is possible for a doctor to act alone without the agreement of senior and qualified peers.

So the Bill makes it harder for a quack to prey on a patient. After the Bill is passed, they will not be able to act alone.

3. ‘People in these situations [patients who are very ill] can be desperate. [I] don’t want to see quackery used and funding taken from science.’

Answer: Quacks will not be able to hide behind the Bill. In fact the Bill will expose quacks.

There is another question here, though – the cost of innovation. Will the Bill cost money? There is no logical reason to say that it will. An innovation may cost, it may cost less or it may cost nothing.

For example, it may conceivably be an innovation to do nothing. There are examples where it is felt that adjuvant chemotherapy for certain cancers may be at best only marginally beneficial, and that the associated potential side-affects of the treatment may outweigh the standard chemo treatment.

In this case, doing nothing would be an innovation. (This is not to advocate in any way that not having chemo is a good thing – it is simply a generic example).

However, if people argue that innovation costs money and that the Bill will inspire innovation and new and better treatments, then that is not an argument against the Bill – it’s an argument against all medical innovation and medical progress.

The Bill won’t divert resources from science. The Bill will help individual doctors help individual patients on a one-off basis.

By trying new ideas and techniques in this way, doctors will learn and the data they collect can be used by other doctors and scientists to inspire full medical trials and scientific discovery.

The Medical Innovation Bill works hand-in-hand with science to deliver new treatments for hard-to-cure diseases.