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19 August 2013

Buying time - Four Corners

Are new cancer drugs worth the price and are there realistic options available?

Would you buy one of these? Yervoy is a new cancer drug that improves survival time for those eligible from an average of 6 months to 10 months. It costs over $110,000 per person per year. Monday, 26th August and Four Corners will be examining this and other drugs that have led leading cancer specialists to state that modern oncology is costing too much for too little benefit.

Speaking personally, I am deeply concerned by clear scientific evidence demonstrating that many people with cancer are being over treated with drugs that have a very high price tag (including serious side-effects) and yet have only marginal benefits. Also, it would seem that many of these same people are either unaware, uninformed , or worse being dissuaded from genuine self-help options that could be helping them to live better and longer.

I believe there is need for urgent discussion at all levels on these issues. Changes in management and attitudes would seem warranted. I hope the Four Corners program may break the taboos that seem to have been in place for too long when it comes to open discussion around these issues.

So this week we go Out on a Limb, reflect on the facts and question what is happening and why. But first





Thought for the day


Action without vision
Is only passing time.
Vision with out action
Is merely daydreaming,
But vision with action
Can change the world.
                 
               Nelson Mandela





What does this turn into? See below.
The magnolias are on!




Yervoy. If you pay your taxes, then you have already bought it.
This new cancer drug (which is not a new chemotherapy, but a more biologically elegant way of attacking cancer metabolically - which does make it something of a step forward) was recently added to the PBS – the Government’s free (to the patients) drug scheme. But all of us who pay taxes are helping to pay for it. Described by the Health Minister Tanya Plibersek as “a major breakthrough”, what wonders what small progress looks like? She also called Yervoy “an important treatment option for patients who are not well enough to tolerate further chemotherapy”.

And there is more to all this. It seems that one in five who take Yervoy live an extra 3 years, a good result for them. But statistically, if the drug only takes average survival from 6 months to 10 months, it seems certain those who survive longer must be offset by others who die quicker than average, and yes, the drug does have a raft of side-effects some of which have been proven to be lethal.

How much will we the taxpayers be paying for this new drug? Somewhere between 30 and 60 million dollars a year.

While all my sympathy goes to people eligible for this new drug and we can easily understand their enthusiasm, the question has to be asked. If a top ten list had been made of things that need extra funding in cancer medicine, where would Yervoy have appeared? If you had $60 million to spend on cancer, how would you allocate it? I would love to hear your response via the comments section below.

Then there is the question of what is influencing our decision makers, as well as the public to support the use of so much chemotherapy and other cancer drugs in current time?

Consider this. Back in 2004 it was shown that when 22 of the common cancer types (which included 90% of all cancers) were investigated in Australia, chemotherapy was shown to increase the average 5 year survival time by only 2.3%.

Amazingly, that study was published in 2004 and to my knowledge there has been no up-date. We do not know what the overall success rate for chemo is in current time. This seems a major oversight or error of omission.

Then we have the deeply disturbing evidence from the medical literature that the drug companies are heavily distorting cancer drug trials, and in the process, powerfully influencing the recommendations of doctors and creating unrealistic expectations in patients, families and whole communities.

For example, the literature makes it clear that drug company cancer drug trials are twice as likely to feature positive findings as independent trials. Even more disturbing, published drug company sponsored trials are twenty times less likely to record a negative finding as independent trials. Get a negative finding? Simple. Do not publish it. The result? Distort the overall results and give a falsely positive indication of benefit.

So this means that the 2.3% benefit attributed to chemotherapy in 2004 was highly likely to be inflated. The real effect on 5 year survival actually may have been a negative one.

But it is not just the researchers and the doctors who are being influenced. Women in Sydney already treated for breast cancer with surgery and chemotherapy were asked how much benefit they would need to gain to agree to have more chemotherapy.

Asked to imagine they had 5 years to live from the time of the survey, and offered to imagine another round of chemotherapy that would add just one day to that five years; how many women do you think would agree to take the extra chemo?

In fact, over 50% said they would. (Ref 5 below).

Some time back two women sat talking in a group I was leading.  Both had been treated surgically for early breast cancer, both had 2 children under ten. Both said they had considered the evidence, had found that chemo could probably improve their chances of 5 year survival by around 4 to 4.5% and that the treatment would probably involve a series of side-effects.

Both said they had discussed their options widely, had thought about it a lot and wanted to do the best for themselves and their families.

One decided to have the chemo – fair enough; the other decided not to – again, in my opinion, fair enough. Both made well informed, well considered choices and decided what they thought best for them and their personal circumstances.

The outcomes? Very different. The woman who accepted the chemo was well supported by her doctors, all the support systems of her hospital and the breast cancer networks. She was treated as something of a hero by her family and friends, courageously going through a tough treatment. She received full support.

The lady who declined chemo described a nightmare. Firstly her male doctor overlooked the fact that she was a highly competent businesswoman with intelligence and no neurotic pathology. He told her she was “being a naughty girl” and that “if you did not take the chemo you will be putting your life at risk and so unless you change your mind, I do not want to see you again”.

But while this woman received no help from her hospital, her biggest problem turned out to be from amongst her extended family and friends. They pressured her relentlessly to accept the treatment; constantly challenging her decision and questioning her lack of consideration for her children.

They overlooked the evidence that simply exercising most days would reduce their friend’s risk of dying twice as much as the chemo (and no-one knows as yet how chemo and exercise really interact). She had good support from her immediate family and was strong enough to persevere through all the difficulties, but what is going on?

What has got into the popular psyche that chemotherapy and the newer cancer drugs like Yervoy have become embraced so thoroughly by the medical profession and the public alike? Has our obsession with quick fix drugs reached a point where evidence and cost is overlooked and hope at any price is acceptable? Are we so scared of dying that we are seeking survival at any price?

I will be fascinated to watch the Four Corners program and see what they have made of it. And I would love to hear your own thoughts. Are you a health professional with a different view? Are you a patient faced with choices, or someone who has made choices with particular consequences? Are you a family member or friend who has shared in or observed someone dear to you making their own choices? How do you feel about all this? What are your thoughts?

At the very least, I am hoping the program will stimulate discussion, maybe even constructive debate on these topics which to date have felt surrounded by unspoken taboos. So do consider adding your voice to the feedback on the program, either on the ABC website, or in your own social media pages, or via the wider media. Maybe this is a good blog to share. Please do add to the comments section below. My sense is we are long overdue for lengthy discussion in this challenging area.

RESOURCES
You Can Conquer Cancer – outlines what I do recommend for people with cancer – and how to do it!

The Gawler Cancer Program – the CD or MP3 download that features how cancer develops and how the body and mind can be activated to counteract it.

What to do when someone you love has cancer - the CD or MP3 download that features the combined feedback from thousands of families and friends of people with cancer. What to do, how to be most helpful, how to look after yourself while looking after someone else.

Cancer, lifestyle and chemotherapy. – a detailed and documented analysis of this area that I wrote in 2006.

RELATED BLOGS

The Cancer Council, the survivors and the book

Twenty years and what has changed?

NOTICEBOARD



1. Mt Macedon workshop next weekend
Saturday August 24th, 10am (arrive 9.30) to 4.30pm
Duneira is an exquisite heritage hill station property on the slopes of Mt Macedon. The garden is like a meditative space, so beautiful and filled with majestic trees. I love being there!

Then the house itself is grand enough to host good sized but still quite intimate events. There is a tradition now at Duneira of hosting community events that range from music to personal development and Ruth and I have become regulars.

So, fancy a nice drive to a beautiful place for a meaningful event? If so, CLICK HERE

2. Retreats / Trainings filling 
MEDITATION in the DESERT
If anyone is still thinking of joining us in the desert, you will need to let us know very soon.
Details: CLICK HERE

IMAGES, WORDS and SILENCE 

Training/retreat for those interested in mind made healing – either for personal use or as a health professional.
With Dr Nimrod Sheinman, Ruth and myself in the Yarra Valley. Details: CLICK HERE

MEDITATION UNDER the LONG WHITE CLOUD
Ruth and I are leading our first meditation retreat in New Zealand in December at the beautiful Mana Retreat centre that has a similar high reputation for a good environment and great food as the Foundation. Details: CLICK HERE

5 DAY FOLLOW-UP CANCER PROGRAM
Specifically for people who have attended a CanLive program in NZ, or Gawler Foundation program. November 18 – 22 at Wanaka out of Queenstown - one of the most beautiful environments there is. Details: CLICK HERE

REFERENCES
1. Flaherty KT et al. Combined BRAF and MEK Inhibition in Melanoma with BRAF V600 Mutations. N Engl J Med 2012; 367:1694-1703

2. THE HON TANYA PLIBERSEK MP, Minister for Health, MEDIA RELEASE: Sunday, 5 May, 2013

3. Morgan G, Ward R, Barton M. The contribution of cytotoxic chemotherapy to 5 year survival in adult malignancies. Clin Oncol. 2004; 16:549-60.

4. Segelov, E. The emperor’s new clothes: Can chemotherapy survive? AustralianPrescriber. 2006; 29 (1):2-3.

5. Duric V et al. Ann Oncol 2005 Nov;16(11):1786-94. Epub 2005 Aug 26.

6. Delivering affordable cancer care in high-income countries. Sullivan R, Zalcberg J et al. Lancet Oncol. 2011;12:933-980. 


14 comments:

  1. My sister was in Melbourne on the weekend and she said that her nephew told her of an expression " what hill are you ready to die on". Ian, clearly helping people with cancer is the hill you are ready to die on. We love you for it, keep it up.

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  2. Yes this issue is close to my heart. 6 years ago I was diagnosed with breast cancer.I decided after much agonizing (I had two young children) to decline chemo which was offered by 2 oncologists as the first treatment option. I also strongly felt considerable pressure & a lack of support in the mainstream system for my decision. The fascinating thing in my case was that there were different treatment options for me (ie Zoladex) that were available as I was classified as relatively low risk. However, at no stage were these options given to me, I was baffled by this attitude. There is a definite bias towards chemo & other expensive drugs because our medical system is heavily influenced by the US model & economically dependent on the US drug companies.There's a chilling perspective to all those research trials. Survival times of a few months are lauded as great achievements. But what about the side effects & the costs & quality of life? Who should make that judgement that a drug is beneficial.?
    But back to my own case,6 years later after choosing my own treatment which didn't include chemo, I feel privledged that I found the strength & resilience & had the opportunity to make that decision. I know that part of that process of decision-making was considering my quality of life & my own death & dealing with my anxiety about that. I ve also had the difficult experience of watching a close friend have invasive treatment with chemo which did not prolong her life but just added to her physical & mental suffering. But the truth is, death is still a taboo in our society. My friend had great anxiety about dying so I think this may have contributed to her decision. She wasn't going to give up the fight for a single minute. Her oncologist acted that way too, as though it was a great battle & there was no option of giving up. I'm not blaming her oncologist but I feel more honest information or options could have been provided. I respected my friend's decision but I don't think she died peacefully. She could have had a much more peaceful death. She had invasive & expensive radiation treatment for a week which was totally useless ,just before she went into a hospice. I think we need to open up the conversations about death & dying. I also thinks the medical profession is in a bind about this. They need to be more upfront from the start. Doctors avoid talking about death & dying but they are doing their patients a huge disservice. The US drug companies have far too much influence from trials, conferences etc.
    Interestingly the European model of breast cancer treatment according to Dr Susan Love doesn't just focus on chemo. I wish our system was more like that. I'll definitely be watching the Four Corners program.
    Thanks for your blog. As usual it's very insightful.

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  3. I also can't wait to see how it is presented. I was on a clinical trial for a targeted therapy for renal cell carcinoma but was removed from the trial because I was still getting progression. It was an eye-opener for me as to how inaccurate their data really is if they refuse to include the negative statistics.
    Despite still getting progression I continued with the drug for 12 months as advised by my Oncologist in case it was slowing the progression. The drug statistics are not great, median progression free survival is 11 months. I had awful side effects and it severely inhibited my immune system and and I have now ceased taking it in favour of supporting my immune system with diet, exercise and meditation.
    People need to be presented with the facts, which is exactly what I got when I went to the Gawler Foundation. Only then can we make informed choices for ourselves. Kim A

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  4. So what do you do when you have tried every holistic cure and only chemo works to lower cancer markers. I didn't want chemo but nothing else worked.

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  5. I had chemo under those circumstances myself - in 1976. I did everything I could to minimise side-effects, maximise the benefits and here I am.
    No one could say these decisions are easy, but having accurate facts to help base decisions upon would be good. If the push to have all drug trials registered when they start - so the results can be monitored - comes into force, that should help somewhat.
    Good luck to you anonymous! and everyone else trying to work these issues out.
    Lets have more public debate/conversation.

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  6. My husband has kidney cancer and needed to have one kidney removed. He had adjuvant chemo but we decided to stop after 3 sessions as the side effects were too severe ( we were also worried about the harm being done to the remaining kidney ).
    We decided to go for Traditional Chinese Medicine (TCM). Our former specialist was ok with this and just asked to be kept up to date. We informed him after we made the decision . We get no financial help from our private health fund, or Medicare. The TCM - over a period of 2 years will cost over $8,000.
    We also follow the Gawler advice in the Cancer book.
    We are now 3 months into TCM . My husband feels well and he will have a blood test in 2 weeks .The (Chinese ) doctor who treats him is not allowed to practice TCM in Australia although he is a qualified doctor in his own country, and gives talks to medical students about herbal medicines. We believe that the medical establishment in Australia is focused only on the treatments pushed by the drug companies .
    We had to find information on our own about alternative treatments .

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  7. I definitely would have no hesitation having chemo if there was a chance of a real long term benefit. In my case the usual intravenous chemo's do not work and the only options are the new targeted therapies. Even though the drug companies are developing new targeted therapies they all work essentially the same way and the statistics on progression free survival and overall survival are frankly pretty awful.
    My quality of life was severely impacted by the side effects and no-one could even tell me if I was getting a benefit because the tumours were still growing.
    I got more progression free time from having radio frequency ablation to the tumours, surgery to remove others and five sessions of radiotherapy than I ever did from the chemo and yet none of those were originally even presented to me as an option.
    If I had just gone the chemo route as was recommended instead of getting second opinions and finding other options I most certainly would not be here now.
    I am not saying there is not a place for chemo but I definitely learned
    to ask questions and not just accept that chemo is right for me because I am told I should have it. After attending a couple of Gawler programmes I actually have a better quality of life than I ever have. I feel wonderful, I have come to terms with my cancer and my mortality, I have hope and am giving my body the best chance, but I am not afraid of dying.
    If they could give me a chemo tomorrow that could cure me would I take it? Absolutely. But until that time I will be weighing up any potential treatment very carefully. Kim A.

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  8. Looking forward to hearing the 4 Corners program.

    Government should give Subsidies for Natural supplements via private health funds and Tax benefits.
    I have prostate cancer and been taking natural supplements for 7 years and health professionals are surprised that I had no treatment.(Not wanting to speak to soon)
    Side effects are untold.

    The all mighty $$$ prevails.$$$ before One's health

    Govt+Medicare NEEDS to cover MRI's Imaging for Prostate/Breast cancer suffers.Currently no Medicare rebate or Item Number applies for Prostate MRI scans & limited rebates for Breast scans.
    One has to pay out of own pocket despite Specialist referral.

    Why doesn't Govt fast track Immunotherapy for all cancers here in Australia?
    Try and get Govt financial support, under Federal Govt Medical Overseas Program.Nearly Impossible.Most are at trials stage.
    Therefore you disqualified, yet show excellent results.

    Immunotherapy for Prostate cancer is NOT available in Australia.

    So much for the Lucky Country.

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  9. When i was diagnosed with breast cancer, I was coerced into having chemo. I actually asked the oncologist if she was on a commission because she was pushing it so hard, She said she just thought it best for me to do. But she did not tell me that exercise would be helpful and it was only later i found out for myself that exercise actually is more likely to help me than the chemo. Is this just ignorance or is it negligence? What will make it change?

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  10. As usual, there is a total focus on treatment of a disease once it is progressed enough to be discovered. There is very little talk in the medical profession about health. Govt agencies are busy doing all they can to scrutinise and condemn practices from offering a health-focussed alternative.

    There is not a once size fits all "treatment", however while our general health is compromised through poor nutrition and poor lifestyle choices, we will not magically get well no matter what path we take.

    I regularly read of the transformation in health that happens when people make changes to their diet and focus on nutrition. Some people may still not realise longevity of life, but I am sure they feel empowered, and experience a better quality of life.

    If we do not want disease, it is up to us to want to change enough to make a difference to our own health. After all, no one cares about our health like we do. Thank goodness for Ian and others who are there to gently coax us into solutions that we can do at home and be supported for our efforts.

    In my former business, I also came across many women who were bullied and threatened for determining their own course of recovery following a diagnosis. It became impossible for me to continue my business because of the total focus on disease, to the exclusion of health.

    Why are we not waking up to the fact that our health has been hijacked and we are being actively discouraged for looking after our own health?

    Ian, you are like a rock to so many people, and you have brought solutions to us with open arms and an encouraging heart. Thank you.

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  11. Thanks Ian, and thank you for a terribly informative and relaxing workshop on Saturday. It was lovely to meet you. I made the decision to cease treatment and to leave a clinical trial and am locked up at home on the healing programme you recommend. Making this decision has been very easy. I am clear about the right choice for me but I am finding other people's reactions interesting. My oncologist, like the one you talk about, got angry and quite aggressive, so obviously fearful on one level or another, telling me my cancer will return and the treatment will hopefully ensure a long remission. Of course they don't know since it's a clinical trial. And despite the outward support from family and friends, I can sense their disapproval and concern. I'm incredibly grateful for people like you who advocate the contrary position. Although deep down I know my path, your's and other voices strengthen the resolve and more importantly, the hope.
    I have written to the ABC asking them to do a follow up looking at natural therapies and have written a blog about my reaction to the programme. It made me very frustrated and very sad. it felt that they were being denied hope but being asked to pay through the nose for that.
    Be well :) Jane

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  12. I have a different opinion about Yervoy. Tanya Plibersek is correct in asserting that Yervoy is a major step forward for metastatic melanoma sufferers. As little as four years ago there was virtually no treatment option.

    So I am happy for some of my taxpayer dollars including Yervoy in the PBS - and the many other breast cancer and other diseases' treatments. For me, it is not even a question.

    There are several new therapies for melanoma currently going through advanced trial phases, including a different immunotherapy drug similar to Yervoy with fewer side effects.

    Drug companies have the will and deep pockets to run expensive drug trials. Before a human trial a protocols agreement has to be reached between doctors, the ethical standards committee and the drug company. So there is no taxpayer expense during trial phases.

    The treating doctor is responsible to the patient and is fully aware of the interests of the drug company.

    It takes a lot of courage to embark on a first in humans drug trial.

    My trials team takes following the trial's protocols very seriously. They are well-trained responsible people and understand the implications of the trial becoming discredited.

    The ethics committee determines a disease progression percentage value deemed to be in the patient's interest to be withdrawn from the drug.

    Negative statistics are included in trial results, reflected in a drug's median results, and there are long tail ends on the statistics. The trial for Yervoy only started three years ago! Patients can only be offered drug trial participation when all other standard treatment options have failed. They may be very sick. More accurate survival statistics are only known once the drug is made available to the general population.

    The Gawler Foundation's cancer survivors' book has a story by someone being treated with the forerunner to Yervoy.

    In my case, any excised tumour material is stored, with consent, in a tissue bank to be made available to an approved researcher, allowing a large cross section of material being shared globally. It does not belong to the drug company. Growing understanding of my disease may facilitate the development of an individualised treatment.

    The drug trials have enabled interdisciplinary and inter-hospital weekly and monthly meetings where each patient is reviewed. It has allowed for much interchange of information at various overseas conferences.

    After the 10-day "Gawler" program I began to become more empowered in my approach to my disease. I put into practice everything I learnt. Ian's words to always keep an open mind and always make your own choice, as well as relying on my own inner wisdom was what I needed to hear most. Ruth's words to keep reading and researching and find gentle counsel were also guiding lights for me. I believe Ian's stillness meditation to be a great and healing refuge amidst so many clamouring noisy opinions. I continue to work on resolving my emotional issues, am secure in my spiritual spaces, enjoy my people, keep fit, eat healthily and am totally grateful.

    The medical profession does not claim to be skilled up in lifestyle. We speak about medical matters and I am my own advocate. It has not been a smoothe journey. Not all doctors are the best. The Gawler program was my first step towards positive response to my disease. Following a healthy lifestyle cannot be harmful. It is natural. I think overcoming my individual disease requires both medical help and the most informed lifestyle help available.

    It is a shame to dismiss a profession entirely or a lifestyle approach entirely, and this disease is complex and individual, needing all the help and constructive discussion possible.

    Thank you.









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  13. I would like to pass on a positive personal experience. I spent 6 years working in the USA from 2006 onward in a very demanding project role. Whilst there it was a requirement to have regular medical examinations and over the period these highlighted a continual constant increase in PSA levels. One of the benefits of going to the USA was to buy a cheap yacht with the intention of shipping it back to Australia. In 2012 I left that job and that company I returned to Australia and went into semi-retirement. I continued having regular 6 monthly checkups which showed that the PSA levels were still rising at a constant rate and were well into the RED danger area. Examinations confirmed that I had an enlarged prostate (with associated difficulties with passing urine). After having additional tests at the start of 2013 my doctor advised that I should watch things until the next 6 monthly checkup, at which point I decided to fly to the USA and sail my boat back to Australia. To cut the story short, the prostate issues continued and when we reached Fiji, I went to the shower facilities at the Vuda Point marina. It was there I saw someone in the mirror who looked like a 2nd World War POW. I had lost 20kg and standing there was a person with skin covering bones and very little muscle, and quite concerning. It was obvious that my body was not in a very good place. Many years ago I saw a documentary with Dr Ainslie Meares and Ian Gawler detailing the miraculous effects of meditation and prayer, and also knew of others with amazing experiences with dealing with cancer and the involvement of prayer and meditation with them. I knew and believed that God was quite able to cure anyone and could cure me if that were His will. Hence, on the trip back to Australia I practiced a lot of serious meditation accompanied by prayer. On the final leg from New Caledonia to Australia, in the pitch black of the night whilst sitting on the back of the boat, I was meditating with eyes closed, and saw a warm white light. This I believe was associated the hand of God touching me. A calm peaceful warm feeling. On reaching Australia and returning home to Western Australia and the first activity was to have a full medical checkup. Every possible test was carried out, and what this showed was that the PSA level had gone back to the normal levels of 8 years previous, my cholesterol and sugars had also both gone down to normal levels from previous highs, and my blood pressure was better than my doctors. That was two years ago and recent tests confirmed that everything is still the same. I am most grateful to the good Lord for what He did for me, and does for so many others. It was the most lovely gift that anyone can possibly receive. All praise and thanks to our wonderful God.

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