Some of the most critical comments have come from breast cancer consumer advocates - overtones, perhaps, of how prostate cancer consumer groups have sometimes reacted to evidence about the potential harms of prostate cancer screening.

Now Hazel Thornton, an independent advocate for quality in research and health care in the UK, and an Honorary Visiting Fellow, Department of Health Sciences, University of Leicester, gives us another perspective. Thornton describes herself as having being “given the breast cancer label” as the result of undergoing mammographic screening in 1991.

She writes:

“It is unsurprising that women find it hard to accept the facts from papers such as that by Stephen Morell and colleagues from the University of Sydney, and from robust systematic reviews of screening by mammography, or of breast self-examination.

Twenty years of being told what to do in paternalistic promotional literature extolling the benefits of ‘finding it early’, and being frightened by being told that ‘it could save your life’, are difficult to reverse.

As we see, many women’s support and information groups are still encouraging women to disbelieve good evidence of over-diagnosis and over-treatment. They assert that it is acceptable to accept unnecessary lumpectomies, mastectomies, radiotherapy, chemotherapy and hormonal treatments “just in case”.

Promotion and arguing that this utilitarian ethic is acceptable by those in authority is unethical and harmful: it denies those women who trust them proper respect and the right to be properly helped to make up their own minds by neutral presentation of balanced facts. For more information, see the English version leaflet that can be downloaded here.

For too long ‘The Facts’ that women have been provided, e.g. by the UK NHS Breast Screening Programme, have been short on fact, short on evidence-based data, but full of persuasion, estimates, promise of benefit – but silent about harms.

Until this year, that is, when they at last capitulated to exposure by a letter in The Times 19th February 2009 signed by 23 international experts, stating that their invitation leaflet was short on the truth and totally inadequate for the purpose of enabling women to make an informed decision about whether to attend.

Many women were and still are unaware that they have any choice in the matter – and, as Iona Heath entitled her paper in the BMJ: “It`s not wrong to say no!” (abstract is here)

Strenuous objection had repeatedly been made to informing invited women about pre-invasive cancers such as DCIS.

Yet, in the UK, on Sunday 1st November 2009 it was reported in The Sunday Times that “The Government has been forced to rewrite its advice on breast cancer screening after research showed that thousands of women have been misled into having unnecessary surgery.”

Joan Austoker (who is leading the revision of the invitation leaflet) “had admitted it had been a mistake to withhold information about unnecessary treatment for DCIS”. It was also reported that they “want to make sure that all the risks of breast screening are referred to in appropriate detail.”

Only this week, 17th November 2009, the US Preventive Task Force has published guidelines with the following recommendations: “The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take into account patient context, including the patient’s values regarding specific benefits and harms. (Grade C recommendation)” .

Quite a turnaround!

This month in the UK, Sense about Science, addressing poor public understanding about what screening can and cannot do, launched a booklet: “Making Sense of Screening”.

Little by little, reason is beginning to prevail over blind belief!”

• A terrific piece bringing some much-needed perspective to discussions about mental illness, especially in the wake of recent murders. By Dr Tanya Ahmed, a registrar in psychiatry and a principal of the health and communications consultancy RaggAhmed.

• More than a million premature deaths across 30 OECD countries could be prevented each year if income inequality was reduced. That’s the best guess of a meta-analysis of studies involving around 60 million people, reported in the BMJ. The authors note that there are many caveats to their findings, including a lack of evidence from developing countries, but say their results have “potentially important policy implications for population health”. Meanwhile, I’m heartened to read that a fellow Crikey blogger is also putting inequality on the public agenda.

• When the law meets public health – Simon Chapman, professor of public health at the University of Sydney, considers the implications of a recent High Court judgment. It dismissed a duty of care negligence claim against a Tasmanian hotel owner who handed back motorcycle keys lodged for safe-keeping to an insistent, belligerent patron who on leaving the pub was killed in a crash while showing a blood alcohol level of 0.253.

• Investigating the ties between drug companies and doctors – A group of researchers from Australia, Canada and the US have done an indepth analysis of disclosures of pharmaceutical sponsorship of gifts and educational events, as has been required of Medicines Australia members since 2007. They conclude that the disclosure does not go far enough and also give some interesting examples of how companies are wooing doctors. Novartis, for example paid flights, accommodation, food, beverages, and conference registration fees for six ophthalmologists to attend a two-day conference in Spain, at a cost of AUD$10,993 per person. For those who follow this field, it will come as no surprise that the researchers include Ray Moynihan, Lisa Bero and David Henry. The other authors are Jane Robertson and Emily Walkom from the University of Newcastle.

Firstly, the authors, investigative journalists Shannon Brownlee and Jeanne Lenzer are at the cutting edge of showing there is a place for philanthropic and not-for-profit funding of health journalism. The Huffington Post Investigative Fund has published some of their other pieces, including this investigation raising concerns about the conduct of clinical trials. Brownlee is a senior research fellow at the New America Foundation and the author of Overtreated (2007), and  Lenzer is a frequent contributor to the British medical journal, BMJ.

As you may have seen from recent reports, Croakey is taking a keen personal interest in this funding model just at the moment.  This article, from the Columbia Journalism Review, reviewing the state of the media in the US, gives a number of examples of universities and health organisations getting involved in funding journalism.

The other reason the Atlantic article is worth reading is that you’re unlikely to have heard of many of the issues it raises before, at least if you’ve been relying on Australian media’s coverage of the influenza pandemic. So far as I’m aware, we’ve seen nothing from the local media (for-profit or otherwise) to rival the depth and incisiveness of the Brownlee/Lenzer piece. Much coverage has simply amplified the statements of government spokespeople and public health officials without critically examining the evidence underpinning them.

Meanwhile, here are two reviews of the article by local flu-watchers.

Associate Professor Heath Kelly, University of Melbourne, writes:

“This article provides a succinct account of some of the issues that impinge on our understanding of the control of both seasonal and pandemic influenza. It concentrates on the pharmacological interventions aimed at controlling influenza, the influenza vaccine and ant-viral medications. We learn that the evidence for the use of both interventions is not as good as many in the influenza community would like it to be. The facts are reported faithfully and the insight into responses to reputable researchers who have rattled the cage of public health orthodoxy makes for interesting and recommended reading.

Part of the problem with our imperfect understanding on the effectiveness of the pharmacological interventions arises from our imperfect understanding of the laboratory confirmed burden of influenza. This issue is addressed briefly on a commentary on the pandemic to be published on-line in the Medical Journal of Australia on Monday 16 November.”

***

Professor Peter Collignon, Canberra Clinical School, Australian National University

“Swine flu continues to generate both fear and controversy.  It is very important that the community has adequate information available so that we can know what were the mortalities and complications associated with this virus in various age groups and in certain risk groups (e.g. pregnant women).

We now have data available to answer some of these questions, particularly from data made available by NSW Health. These show that when the H1N1 virus spread thru the NSW population last winter 1,214 people with pandemic H1N1 influenza infection were hospitalised (17.2 per 100,000 population), 225 were admitted to intensive care (3.2 per 100,000), and 48 died (0.7 per 100,000).

Figures for the whole of Australia were similar with an overall death rate of 0.8 per 100,000.  The death rate in those under the age of 40 was 0.4 per 100,000. About three quarters of deaths were in those with associated risk factors. Thus the death rate in those under the age of 40 years and who had no known risk factors was 0.1 per 100,000 (or 1 per one million people).

We need to remember that at the beginning of this epidemic many experts and even Heath Departments were postulating that 20% or more of the population would get infected and there would be an associated case fatality rate of 1% or more. That translates to a population mortality rate of 200 per 100,000 people (or 300 times higher than what occurred).

Thankfully we did not get anywhere near that figure but it shows how we need to reassess many of our assumptions as they have proved to be wrong.

Figure such as these are important as we need these to make sensible decisions re the likely benefits versus risks from vaccines or other interventions. The Atlantic magazine article looks at these issues with regards to the efficacy and safety of influenza vaccines and also the likely benefits and pitfalls of the widespread use of drugs such as Tamiflu. It shows there are still many unanswered but fundamental questions.

We need research studies done with appropriate control arms so that we can move forward after we gain essential information that is currently lacking. The article is essential reading if you want to see the broader picture about swine flu and what actions we can take to ameliorate the problem and the likely success of these actions.”

And a final pointer from Croakey:

• A new journal, World Medical & Health Policy, has just published an article arguing that there are sound reasons for NOT expecting the worst of the 1918 pandemic to recur. It says the debate about the threat posed by pandemic influenza should move beyond “facile analogies and worst-case scenarios”.

It states: “While there has been sustained attention to the myriad trends that increase our risk from emerging infectious diseases such as pandemic influenza, far less attention has been paid to countervailing forces… It is important to take the panic out of pandemic. The response to the pandemic influenza should be guided by sound science, realistic risk assessments, and good public policy.”

DEM – that’s what is left when you take the panic out of pandemic. Any thoughts on what that might stand for?

Post Script with some more links that may be of interest:

• The public health blog The Effect Measure, compares the paediatric toll of pandemic influenza and pneumonia

• The Wall Street Journal health blog analyses the swine flu toll in the US

• A bowel cancer screening program in Northern Ireland is reportedly a casualty of swine flu spending

Many of the reports, whether in the local or the national press seemed to uncritically buy the GPs’ line that super clinics will threaten the integrity of the relationships between GPs and their patients.

Even the Sydney Morning Herald editorial examined the issue as if it was only about patient care.

Only one report that I could find – and perhaps not coincidentally in a publication for doctors – acknowledged that other considerations (ie $$$s) might also be driving the opposition.

Now I am not seeking to be an apologist for the clinics. And you could argue that it’s entirely fair enough that small business people would want to defend their business.

But if we’re going to amplify the concerns of one group with a professional and financial stake at play, then perhaps we should also be reflecting the views of others involved.

Despite the silly name – GP super clinics – the facilities are aimed at promoting multidisciplinary care. So maybe we could also be hearing from the nurses, psychologists or others involved?

Even better if we could get some independent sense from the local community about how well the existing model of general practice is meeting their needs and what they think about the super clinic approach.

I’m sure there are problems around the place with the various super clinics being developed – it would be surprising if there were not, given all the logistical, bureaucratic and professional challenges that are likely to be involved in setting them up.

But the general public may not be aware that there are also some good news stories around.

From what I’ve heard, the one being developed at Shellharbour just south of Wollongong is going to be offering a terrific range of clinical and health promotion services to an otherwise under-served community. Importantly, it will also be a training hub, with postgraduate nurses, GP registrars and medical students onsite.

Those behind it hope that by developing new models of care and flexible, stimulating working environments, the Shellharbour clinic will help recruit and retain health professionals in a needy area.

There’s another good news story to be found at Gunnedah, the north-western NSW town that stakes its claim to fame as poet Mary Mackellar’s birthplace and “Koala Capital of the World”.

It’s not about how federal policy solved a local health need. It’s about how a local community came together to develop a local solutions for their problems – and then got some Federal backing to help realise it.

I wrote recently in Australian Rural Doctor about how the people of Gunnedah have been engaged in an intensive fund-raising campaign over the past 18 months in order to establish an integrated health clinic. The plan is for it to be owned by a  not-for-profit, community-owned company, run by community members, health professionals and representatives of local agencies.

The origins of the concept date back four years when a local GP, Dr Grahame Deane, acutely conscious of the perilous state of the town’s health services, began working with various agencies to develop some solutions.

The goal was to create an attractive environment to help with workforce recruitment, while also increasing the town’s chances of “growing its own” by becoming more involved in teaching and training.

But rather than impose his own vision of how to achieve this, a series of community meetings were held, to find out what the locals wanted. The response was overwhelming, with 350 people packed into one forum, and many turned away for lack of space. It turned out that the people of Gunnedah shared Deane’s vision for a community-owned venture.

Deane believes the “absolutely amazing” community support has been critical for the project’s progress. “The important thing is that it is not owned by a doctor, it’s not owned by a corporation, it’s owned by Gunnedah,” he says.

After my story went to press, it was announced that the town had won super clinic funding.  Deane rang recently to tell me how delighted he was to get the funding although he admitted that he didn’t much like the “super clinic” name.  I heartily agreed with him. Terrible name, but the concept may have more merits than some recent headlines have been suggesting.

And I tell you what – I much prefer the richness of the story out of Gunnedah than the one we’re being told out of western Sydney.

But the real food war to watch is underway in the US, and you can read more about it in this investigation, “The Food Lobby’s War on a Soda Tax”, jointly undertaken by the Centre for Public Integrity and the Huffington Post Investigative Fund.

The investigation reports that:

Washington lobbyists have been enjoying a multi-million-dollar sugar rush from the food industry. Soft drink makers, supermarket companies, agriculture and the fast-food business have poured millions into campaigning against what they fear could be a burgeoning national movement to raise money for health care reform by taxing sweetened beverages.

During the first nine months of 2009, the industry groups stepped up their lobbying in Congress. They have spent more than $24 million on the issue of a national excise tax on sweetened beverages and on other legislative and regulatory issues, according to an examination of lobbying reports filed with the Senate Office of Public Records. The review shows that 21 companies and organizations reported that they lobbied specifically on the proposed tax on sugar-sweetened beverages — which among other things would include sodas, juice drinks and chocolate milk.

About $5 million of the money was spent on a national advertising campaign aimed at Capitol Hill lawmakers and promoting a newly formed coalition called Americans Against Food Taxes. The group bills itself on its website as a coalition of “responsible individuals, financially-strapped families, [and] small and large businesses” but its 400-plus membership list is dominated by industry heavyweights such as Burger King Corporation, Coca Cola, PepsiCo and Domino’s Pizza.

The heavyweight lobbying and spending is not so surprising, given what’s at stake for the industry.

In California yesterday, legislators were hearing arguments in favour of a soft drinks tax, including from Professor Kelly Brownell, who was the lead author on this landmark article in the New England Journal of Medicine arguing that there are “compelling” reasons for taxing sugar-sweetened beverages.

According to this LA Times report, one senator told the hearing that he wants “to end the Pepsi Generation,” and compared the marketing of soft drinks to cigarette marketing.

Brownell told the hearing that the landscape for the soda industry is not unlike what it was for the tobacco industry when governments began to increase taxes on cigarettes as a strategy to get people to stop smoking.

Meanwhile, Kellogg has announced that it will withdraw the IMMUNITY claim on Cocoa and other Rice Krispies cereals. The withdrawal follows this report in USA Today, citing concerns held by the San Francisco city attorney and prominent public health experts (including Kelly Brownell).

A collector's item...

On related matters, the SMH is  reporting on a project by the International Consortium of Investigative Journalists examining the climate lobby in eight countries including the US, Canada, Australia, India, Japan, China, Belgium and Brazil. The conclusion is that “big greenhouse polluting companies around the world, employing thousands of lobbyists, are exerting heavy pressure on governments to weaken climate change laws at home and slow progress on an international climate agreement in Copenhagen”.

It all starts to sound so familiar doesn’t it….

“We don’t want people to panic,” Dr Otis Brawley, the Society’s chief medical officer told the NYT. “But I’m admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated.”

The LA Times has another slant on the story.

Professor Ian Olver, CEO of Cancer Council Australia, says it is important to consider the pros and cons of screening for each type of cancer, rather than making blanket statements.

He writes:

“It is not helpful to bundle prostate and breast cancer together in a discussion about the benefits of screening. The aim of screening is to diagnose cancer or pre-cancerous conditions early to significantly improve treatment outcomes. It should never be interpreted as guaranteeing cure for all individuals.

The term “over-diagnosis” can apply to people who have cancers detected by screening but who would have died of something else before the cancer would have been detected in the absence of screening. Obviously very slow-growing cancers would make over-diagnosis more likely.

After many years of mammographic screening for breast cancer, the International Agency for Research in Cancer has estimated that the reduction in the death rate from breast cancer in the main target group of 50 to 69 year olds is 35%, a significant mortality benefit, but not without some cost.

The estimate from the initial mammography trials of over-diagnosis is 2 to 3% (that is cancers that would not have progressed if left untreated). Adding in the pre-invasive DCIS (ductal carcinoma in situ) the range of estimates of over-diagnosis is around 9%. However, this still means that the vast majority of detected cancers did need treatment and that lives were saved.

Prostate cancer is quite different. There is no history of population screening programs to study. Two large randomised trials of PSA testing of asymptomatic men from last year had differing results.

No change in the death rate from prostate cancer was found in an American study while in the European study a 20% relative decrease in mortality was reported.

The overtreatment rate in this study was that for every 49 men who underwent prostatectomy only one life was saved, yet each was at risk of the side effects of impotence and incontinence.

Over-diagnosis and over-treatment are why Cancer Council Australia and a number of other health groups recommend PSA screening be an individual choice. Further research should be encouraged in this and other cancers to find better screening tests and tests that will identify indolent cancers which don’t need immediate treatment.

So, although it has always been known that not every individual will benefit from screening, in the proven population screening programs, for cervical cancer, breast cancer and colorectal cancer, the likelihood of reducing deaths from these diseases outweighs the chance of over-diagnosis.

Nonetheless individuals need to be informed of both the risks and benefits.

It would be a pity if doubts about over-diagnosis discouraged participation in these programs by the groups most likely to benefit or dissuaded government from completing the roll-out of the colorectal screening program,  so that it could not reach its full potential of saving 30 Australian lives each week.”

Hadler argues that “health journalism is more beleaguered than most other specialties by the financial crunch that faces the entire Fourth Estate”, and is particularly alarmed by the influence of sophisticated medical marketing upon the media’s health coverage.

You can read his article in full here.

Hadler wrote “Worried Sick: A Prescription for Health in an Overtreated America” (which I reviewed last year for the Medical Journal of Australia) and “The Last Well Person.”

The Wall Street Journal reports that Merck has just released its list of payments to doctors for giving talks at promotional events. The list also includes some nurses, pharmacists and scientists.

The payments range from $150 to more than $20,000.

The paper reports that many drug companies are moving to do likewise, and that Eli Lilly published its own list earlier this year.  There is also a political push to require drug companies to report the payments.

It seems that Australia really is dragging the chain in this area.

The advent of the Agency presents another predictable opportunity for a predictably boring debate about the “nanny state”, as per this segment from Richard Aedy and the Life Matters Team yesterday, featuring public health advocate Professor Mike Daube and individual choice advocate Julie Novak, from the Institute of Public Affairs. Incidentally, Mike Daube also spoke at a nanny state debate earlier in the year that I wrote about for Crikey.

It’s well and truely time that we put these nanny state debates to rest. They are SO last century and so unenlightening, especially when there is much else we could be talking about, including how many aspects of the modern environment encourage and support unhealthy behaviours.

The problem with the nanny state debate is that it keeps the discussion firmly focused on health as a function of individual behaviour, when it is much more useful and helpful to take an environmental health perspective.

Smoking rates fell because of changes – such as workplace smoking bans, advertising bans, increased taxes and prices, and changing social mores – which created an environment that made it easier for individuals to make healthy choices.

The other problem with focusing on Nanny is that it keeps the focus firmly away from where it is needed: looking at the contribution of powerful industries – food, alcohol etc – to poor health.

So next time anyone feels inclined to reach for a Nanny state debate, don’t bother. Nanny is now officially dead and buried. I hope.

Post Script: Now here’s a smart way to examine related issues (and no mention of Nanny either). Courtesy of the SMH’s Ross Gittins.

Not surprisingly, the heavies are cracking down. Here is a brief report from the “who will speak for us” group:

“Things have gone insane here with computer access records of all staff being checked! Management is determined to find out who is involved and are using fear to control people.”