Category Archives: health

Older body, youthful mind

For those who are getting old, there are ways to keep youthful mentally.

Senior lady concentrated

Is mental decline in old age inevitable? Are there habits that can help in maintaining mental acuity in later years? The older I get, the more these questions interest me, and so I keep on the lookout for discussions of relevant research that can be put to practical use. I’ve just read Staying Sharp, one of the most useful contributions in this area.

Academics and the life of the mind

I work as a researcher, among academics who depend on their minds to do their work. Most of my colleagues are over 40. Yet, despite mental capacity being crucial to scholarly performance, relatively few pay a lot of attention to nourishing their brain – “nourishing” interpreted in a variety of senses.

Whatever their views about the mind, many scholars behave as if it doesn’t matter all that much how they treat their bodies, because the mind is this separate entity that can be cultivated autonomously. Some damage their brains through excessive alcohol. More common is a neglect of physical exercise, even though there is ample evidence that exercise benefits mental functioning in multiple ways, including reducing anxiety and depression. Poor diet is also common.

alcohol-attacks-the-brain

The behaviour of intellectuals who neglect their bodies might be related to a status difference between white and blue-collar workers. To distinguish themselves from manual labourers, intellectuals may avoid physical exertion. Or perhaps the status comes from having sufficient income to afford a nice car and drive to work rather than walking or cycling.

Staying sharp

The book Staying Sharp is written by two US health practitioners who seek to combine ideas from scientific research with holistic approaches. Henry Emmons is a psychiatrist with a background in conventional medicine who now includes natural therapies in his practice; David Alter is a psychologist with a PhD who practises in a centre for holistic health. Their book is subtitled 9 keys for a youthful brain through modern science and ageless wisdom. Their focus is on older people, who they euphemistically refer to as being in the “second half of life,” roughly the 40s and beyond.

staying-sharp

After a few introductory chapters, Staying Sharp has 9 chapters addressing each of the 9 keys in the subtitle. The authors have categorised the vast body of relevant research and practice into a convenient package for the non-specialist reader.

Of the 9 keys, three are more overtly about the body: exercise, sleep and diet. If the brain is thought of as a biological organ, then it makes sense that exercise is beneficial: it stimulates the flow of blood throughout the body, including the brain, providing nourishment and removing waste products. A good diet ensures the nourishment is of the highest quality. Sleep allows the brain to recover from inputs during wakefulness, while also performing functions such as consolidating memories.

Emmons and Alter’s other six keys are about mental orientations: curiosity, flexibility, optimism, empathy, relationships and authenticity. It seems plausible that greater curiosity can aid the mind, because it involves becoming exposed to new ideas, developing new connections and brain cells. Many people remain stuck in the same sets of ideas for years or decades, and this can lead to stagnation. I perceive this in myself in my daily writing. When I’m writing about a topic I’ve written about before, the words flow easily, but if I tackle a new topic, it becomes more of a struggle, which might be a sign of greater effort that mobilises less frequently used brain circuits. It is more comfortable to stick with familiar topics. Tackling new topics, as a result of curiosity, is analogous to exercise that pushes the body a bit beyond its comfort zone.

get-curious-pittsburgh-about-curious-george-y1qaei-clipart

Emmons and Alter go well beyond this sort of intuitive assessment. They cite all sorts of scientific studies about curiosity, provide an evolutionary rationale for the advantages of curiosity (but not too much of it), give the case for experiencing boredom (to a certain degree), and provide all sorts of suggestions for fostering curiosity.

For each of the chapters on the 9 keys, Emmons and Alter provide a summary of key concepts, a rationale for the activity, evidence of effectiveness, and practical guidance for engaging in the activity. For example, concerning sleep they report on the prevalence of sleep deprivation in the US, tell about changes in sleep patterns as people get older, describe at some length the benefits of sleep (improved mood, clearing of the mind, repairing the body), give the biological rationale for the importance of sleep (including detoxification), and then pages of details about how to develop habits that promote good sleep.

henry-emmons
Henry Emmons

Of writing for the general reader on the mental side of ageing well, Staying Sharp is the most comprehensive treatment I’ve seen. It draws on a wide range of scientific literature and covers both physical and psychological dimensions. The authors provide detailed practical steps in each area they address.

Out of the vast body of research and writing about the mind and ageing, to highlight 9 areas is a matter of convenience. In practice, all sorts of practices make a difference, but trying to make sense of all the information available is overwhelming. Readers who have been following research in areas covered in Staying Sharp will have their own ideas about priorities. This is only to be expected, because no prescription for productive ageing is ideal for every individual.

david-alter
David Alter

Reservations

Staying Sharp is oriented to affluent people and to life in the US. For those living in poverty or in a different culture, some of the keys would be different. To stay sharp, sometimes the first priority is to stay alive.

The book is written for individuals, even though some of the recommendations are about building connections with others. Individualism is higher in the US than anywhere else, and is probably greater among those who are well off. As a result, Staying Sharp has little about collective solutions for ageing well. For example, towns can be designed so that exercise by walking and cycling is part of daily life, and workplaces can be designed to foster greater optimism and stronger relationships. These involve social change, will be resisted by groups with vested interests, and are unlikely to make a big difference in the short term.

It’s possible to imagine a future in which the insights from Staying Sharp, and the experiences and studies on which it is based, are used to build communities that encourage mind-strengthening throughout life. Until then, a possible substitute is to devote efforts towards moving towards such a future. The efforts will help others and, by following Emmons and Alter’s advice, can contribute to staying sharp throughout one’s own life.

Read the book and visit the Staying Sharp website, https://stayingsharp.aarp.org

exercisebrain780

Brian Martin
bmartin@uow.edu.au

Thanks to Paula Arvela, Anu Bissoonauth-Bedford and Jody Watts for helpful comments.

Preventing catastrophe

Floods, fires, hurricanes, earthquakes, tsunamis: can the worst consequences be prevented?

illawarra_floods_010-540x360
Wollongong, 1998. Photo: John Larkin

On 17 August 1998, there was sudden downpour in Wollongong, with over 300mm of rain in a few hours. There was flash flooding; coal wash from a colliery swept through suburbs.

Some homeowners were insured; others were not. There was uproar over whether the damage was caused by storm or flood, because some companies covered only storm damage. After being shamed in the local media, some companies paid up – but not all.

The controversy over insurance coverage overshadowed a bigger issue. Should something be done to prevent damage and loss of life from such heavy rain? Wollongong is built on the edge of the ocean, in a narrow strip next to a steep rise called the Illawarra escarpment, and rain runs in torrents down the incline to the sea.

illawarra-escarpment
View of Wollongong from the Illawarra escarpment

When houses are built at higher elevations, displacing the tree cover, there is more runoff to the areas below, creating a greater risk of inundation. Perhaps the local government should impose stricter controls over development, or homeowners at higher elevations should pay a premium land tax to compensate for contributing to increased risk of damage to other properties.

The bigger picture

The Wollongong storm story is a small example of a much bigger problem: what should be done about so-called natural disasters? In 2011, a huge earthquake off the coast of Japan created a tsunami that killed over 15,000 people and damaged nuclear power plants. Japan sits on or near a major fault line for earthquakes.

If you want to learn more about the history of fires, floods, earthquakes and tsunamis, then check out the engaging book The Cure for Catastrophe: How We Can Stop Manufacturing Natural Disasters. The author, Robert Muir-Wood, has decades of experience in investigating disasters, often visiting sites immediately afterwards, observing destruction of buildings and noticing which construction types survived, assessing responsibility for the human deaths and casualties and seeing what reduce the impact of natural forces.

robert-muir-wood
R
obert Muir-Wood

Much of the book is historical, telling about many of the most prominent disasters, such as the 1755 Lisbon earthquake. In earlier centuries, before the theory of plate tectonics, Aristotle was the authority, and he believed earthquakes were due to great underground hollows that opened and swallowed up buildings and people. In popular understandings, in Europe at least, disasters were seen as divine retribution. However, the Lisbon earthquake did not fit the pattern, as the city was one of the most religious at the time.

lisbon-earthquake-1755-granger-300x176
An artist’s portrayal of the Lisbon earthquake

Gradually, more empirical approaches gained support. However, the scientific study of disasters faced several obstacles. One was vested interests. After the 1906 San Francisco earthquake and fire, local merchants excised mention of earthquake and opposed funding studies of earthquake hazards, because acknowledging the risk might discourage commercial development. The disaster was named a fire and regulations were set up so buildings could withstand fire, but they remained susceptible to collapse due to fierce shaking.

Unnatural disasters

Muir-Wood says that natural disasters are not purely “natural” but always involve a social dimension. Indeed, most of the damage from disasters, physical and human, is due to human choices. Today, there is sufficient knowledge to know what to do to minimise death and damage, but often insufficient political and social will.

Fewer people died in building collapses in the Magnitude 8.8 central Chile earthquake than in the 1,000 times smaller 2009 L’Aquila earthquake in central Italy. After fifty years of investment in world-class schools of engineering, and by strictly enforcing tough building codes, Chile today has some of the safest earthquake-resistant building stock in the world. (p. 172)

In some locations, disasters are frequent enough that people should stay away. It makes no sense to rebuild in a floodplain unless there are ways to prevent flooding. But after a few decades, people forget the previous disaster and profit-seeking developers carry the day.

The Netherlands offers the best example of effective disaster prevention. With much of the land below sea level, the country relies on dykes to prevent inundation. In case the dykes are breached, there are plans for secondary defence of life and property. What is especially significant in the Netherlands is that the potential for disaster had a profound effect on the political system, with all involved in a cooperative effort to protect the country. The potential for disaster in this case generated a special form of political cooperation.

netherlands-flood-control
Flood control in the Netherlands

Muir-Wood describes the rise of insurance systems. Initially, competition between insurance companies was ruinous: some would gain business by offering low premiums and then go bankrupt when a disaster required large payouts. Gradually, insurance companies adopted scientific approaches, calculating premiums in a realistic way. They also led to the emergence of reinsurance, insurance for insurance companies. Reinsurers have a special interest in disaster planning, and can apply pressure to adopt policies that reduce damage in a disaster.

Muir-Wood says that, ultimately, affluence is a cure for catastrophe, because people are willing to pay to reduce risks. Just as important, though, is corruption prevention. In many countries, there are laws governing housing construction to reduce the risk of collapse in an earthquake, but the laws are routinely ignored: bribery enables dangerous construction to continue. In such circumstances, campaigns against corruption have the potential to save many lives.

Construction codes and suitable technologies can greatly reduce vulnerability to disasters. So can warning systems. Yet another vital step is to stop contributing to the likelihood of disasters. The most significant item here is global warming, which is increasing the sea level and the likelihood of damaging storms. There are sophisticated models to calculate the contribution of climate change to natural disasters. Disaster mitigation includes campaigning to reduce the emission of greenhouse gases.

When insurance companies refuse to cover certain hazards, this can have an impact, for example reducing the value of houses in areas subject to flooding. Whether insurance is available, and how much it costs, thus can be a signal about the need for disaster planning.

haiti_earthquake
The 2010 Haiti earthquake: more than 200,000 people died

Unnatural disasters, take two

Muir-Wood does not address disasters primarily created by technology. A good example is nuclear power. There is no private insurance available for nuclear reactor accidents. In the 1950s, the US government passed the Price-Anderson Act exempting electricity utilities from full and immediate liability for reactor accidents. This served as a financial prop for the nuclear industry: prices would have increased if commercially calculated rates had to be paid to cover the exceedingly rare but exceedingly expensive costs of a major nuclear accident. Some analysts have recommended that nuclear power plants be built underground to reduce the damage from a meltdown accident. This has not been done, indicating that governments are subsidising nuclear power, with people and the environment occasionally paying the price, as at Chernobyl and Fukushima.

Across the world, there is another catastrophe that is unnatural, yet all too familiar: war. Many of the world’s top scientists and engineers toil away to produce deadly weapons, and arms factories pump out everything from small arms to missiles. Although popular concern about nuclear war faded after the 1980s and the end of the cold war, there remain over 10,000 nuclear weapons with the potential to kill hundreds of millions of people. The cure for catastrophe in this case is not more weapons or more treaties, but rather disarmament. The most important tool against war is peace activism, but it receives little funding compared to the war system.

One of the important messages from The Cure for Catastrophe is that most of the consequences of natural disasters are not “natural” but rather depend on human choices, for example about where and how to build housing. The same applies to unnatural hazards of nuclear, chemical, biological and other creations. It is an interesting thought experiment to apply the principles of disaster planning and insurance to the risk of war.

cure-for-catastrophe

Bad outcomes were determined, researchers were discovering, not so much by the earthquake or hurricane itself as by the nature of the society affected – its inequalities, poverty, education, and preparedness. Disasters were “manifestations of unresolved development problems,” and the flood or cyclone was a trigger. The problem of disasters would not be solved by focusing on the hazards alone. (p. 212)

Brian Martin
bmartin@uow.edu.au

The rise and decline of Illawarra Citizen Advocacy

Illawarra Citizen Advocacy was a world leader in recruiting and supporting citizens to advocate on behalf of people with intellectual disabilities. The decline of the programme provides some cautionary lessons.

Ken-Joanne
Ken and Joanne, Illawarra Citizen Advocacy

Imagine someone arranges a meeting with you and says, “There’s a young man named Fred who lives in your neighbourhood. He has a serious intellectual disability and he is vulnerable to abuse. He needs someone who will ensure that he is safe — someone who will protect him as much as a relative or close friend. And he needs this person to stand by him for the indefinite future, maybe the rest of his life. I think you’re ideal to fill this role. Would you agree to be this person — to be Fred’s advocate?”

This is a very big request. It’s a huge request. Who would possibly agree?

I learned the answer to this question in 1996. The coordinators of Illawarra Citizen Advocacy, Julie Clarke and Joanne North, talked to me about their work and then asked whether I would be an advocate. For my own reasons, I declined. But I did agree to join the board of the programme, and then a year later became chair of the board for the next decade.

In the 1980s, in the Illawarra — the region including the city of Wollongong — a number of parents and others supporting people with intellectual disabilities had a dream. They shared stories, held meetings and lobbied to obtain funding for a programme practising citizen advocacy.

jo-and-kirsten
Jo and Kirsten, Illawarra Citizen Advocacy

Advocacy

To understand citizen advocacy, it’s first useful to describe advocacy, which can come in various types. A lawyer is an advocate for clients and environmentalists are advocates for nature. People with skills and connections can advocate on their own behalf, called self-advocacy. For example, people who cannot see can speak, write and campaign for better services and facilities to cater for the sight-impaired.

However, some people have little or no capacity to advocate, and this includes many with intellectual disabilities, sometimes combined with physical, mental health or other disabilities. The advocacy of concern here is on behalf of people with disabilities who have significant unmet needs. They might be neglected, at risk of abuse, friendless, homeless or not being given opportunities.

Several of the Illawarra residents who met in the 1980s were parents of children with intellectual disabilities. These parents were worried what would happen to their children after they, the parents, died or became incapacitated. Other parents needed help to be able to cope with the needs of their children.

One type of advocacy is called systems advocacy. This involves paid advocates — who might better be called organisers — helping to change systems that prevent full development. Education systems or transport systems may need different policies or technologies or understandings so they can cater for people with disabilities. Systems advocates often work with others to foster change, for example working with parents to open up education systems to serve their children. Systems advocacy has a multiplier effect, because a change in a system today benefits some individuals immediately and many more later on.

Another type of advocacy is called individual advocacy. A paid staff member advocates on behalf of various individuals, taking on clients one after the other, sometimes just for a single item of need, sometimes for repeated expression of voice for the same person.

Then there is citizen advocacy. The paid staff members, called coordinators, do not do advocacy themselves. Instead, they search for people with disabilities with significant unmet needs who might benefit from advocacy. When someone suitable is found, this person is recruited into the programme and called a protégé. Then the coordinator searches for a member of the community — an ordinary citizen like you or me — who would be willing to be an advocate for this protégé, usually for the indefinite future. It is an extraordinary thing to ask. I said no myself, but as a member of the board of Illawarra Citizen Advocacy, I discovered there are many who say yes.

Citizen advocacy relies on people — the advocates — who have no special training. The advocates can obtain advice and encouragement from the coordinator, but need to do the advocacy themselves. What they lack in training they make up for in learning about their protégé. Over the course of weeks and months, the advocate learns about the protégé’s life and needs and discovers what can be done to protect and enhance the protégé. In a sense, a citizen advocate is like a family member, developing the same sorts of insight and commitment that parents, siblings or children can develop about others in their families.

Sometimes the most important contribution of a citizen advocate is simply to be there. Some protégés are so isolated that there is no single person who stays in their life. Various service workers — some of them highly caring and skilled — may help the protégé, but often the workers come and go, not maintaining an ongoing relationship. The advocate comes into the protégé’s life and is there because they want to be there, not because of being paid to be there.

peter-rae
Peter and Rae, Citizen Advocacy South Australia, http://www.citizenadvocacysa.com.au/success_stories/peter-and-rae

Activities in Illawarra Citizen Advocacy

I attended monthly board meetings of Illawarra Citizen Advocacy. At each meeting Julie, the coordinator, told about what she and Joanne had been doing.

One key activity was recruiting protégés according to an agreed recruitment plan for the year. Julie and Joanne searched for people with intellectual disabilities, visiting schools, homeless shelters, homes for the aged and a range of other places and networks, looking especially for people in need who might not be known to or well served by welfare or other agencies. The stories of their searches, and of the individuals they recruited, showed the importance to seeking to find those who are most disadvantaged and in need of advocacy.

Another key activity was recruiting advocates. After a protégé had been recruited into the programme, Julie and Joanne assessed the protégé’s needs and built up a profile of the sort of person who would be most suited to be an advocate for this particular protégé. Then they started asking, via their networks and through cold calling. They took into account age, sex, location of residence and especially the sort of advocacy needed. Some protégés needed, most of all, a friend. Others needed a door-opener, who would expose them to new experiences. Others needed a protector, against abuse or destitution. Julie and Joanne were matchmakers, putting together two people who would be suited for each other.

Recruiting advocates was often very difficult. After all, not that many people are willing to make a strong commitment to protect and defend someone they have not even met. Julie would sometimes find an advocate on her first try, but more commonly she talked to a dozen people, or even several dozen, before finding the right person who was willing to be an advocate.

Next, the protégé and advocate were each prepared for their roles, and then the first meeting was arranged. A match was made. Every new match was a cause for celebration. On the board, we were buoyed by these heart-warming stories.

At the board meetings, Julie told about recruiting protégés and advocates and about making matches. She also told about ongoing relationships between protégés and advocates. Each month she or Joanne tried to contact each advocate, a process called follow-along, to see how the relationship was going, sometimes giving advice concerning challenges and sometimes encouraging advocates to be more vigorous in their efforts. The stories Julie told were both tragic and inspiring. They were tragic in revealing the despair and difficulties in the lives of many protégés and inspiring in telling of the efforts of the advocates. Sometimes advocates made a tremendous difference.

As I spent more time on the board, and took on some new roles, I learned more about citizen advocacy in Australia and elsewhere. There were perhaps a dozen active citizen advocacy programmes in Australia, most of them funded by the federal government via the Department of Family and Community Services (now the Department of Social Services). The programmes supported each other in various ways, and banded together in an association. I became the Illawarra programme’s representative on the Citizen Advocacy Association.

michelle-winnie
Michelle and Winnie, Citizen Advocacy Perth West, http://www.capw.org.au/stories/michelle-winnie/

Achievements of the programme

Gradually I came to realise that Illawarra Citizen Advocacy (ICA) was an outstanding programme. Julie and Joanne’s passion for helping those in need, and their description of how the programme operated, had been enough to get me to join the board. I soon discovered that their passion and commitment were having impressive results. ICA was creating matches at an impressive rate, more than a dozen each year. Some relationships didn’t last all that long, but others continued for years or even decades. Julie and Joanne were supporting more than 70 relationships, requiring a huge amount of follow-along and support in addition to their challenges in finding new protégés and advocates.

Not only did ICA support a large number of relationships, but many of these were ones that involved vigorous advocacy, in which advocates had to challenge services to act. Before I joined the board, three advocates, whose protégés resided in Cram House, a facility for severely disabled children, made a complaint to the relevant government department, leading to a major investigation that led to Cram House being closed down. Vigorous advocacy can be needed when problems are serious, and citizen advocates are well placed to undertake it, because they are independent citizens who are not paid or receiving benefits from their roles as advocates. Paid advocates, on the other hand, have to be careful because their jobs might be in jeopardy if they offend powerful service providers.

Every year, the ICA coordinators would plan their activities for the year. I joined some of these all-day meetings, which were carried out following a careful protocol. One of the priorities was seeking protégés who were either quite young or quite old. These age groups are often overlooked because the individuals lack the capacity to seek assistance themselves and they are less likely to be seen as an advocate’s friend. It is a useful reminder that the roles advocates are supposed to play depend on the needs of the protégé, not the expectations of the advocates.

A certain proportion of protégés were sought who were unable to communicate. Such individuals are often highly vulnerable because they cannot tell anyone about their needs. When communication is difficult or impossible, the relationship is even less likely to be one of friendship, which normally involves mutual interaction.

This brings up another distinction, between expressive and instrumental relationships. Expressive relationships involve emotional needs of the protégé, for example for companionship, advice and role modelling. Instrumental relationships, on the other hand, involve ensuring things are done for protégés, such as finding a suitable home, avoiding prison or being protected from abuse or neglect. No personal connection is needed, yet the advocacy is vitally important.

I discovered that ICA was doing outstanding work in some of the toughest challenges: recruiting protégés who were especially vulnerable, especially in the young and old age groups; recruiting protégés who were unable to reciprocate in a relationship; and, related to this, recruiting protégés who needed only instrumental advocacy. Julie and Joanne were being successful in finding such protégés and in finding individuals who could take on the incredible challenges of being their advocates.

In 2002, I embarked on a little research project, with Julie’s assistance. In her regular follow-along discussions with advocates, she asked how many hours they had spent during the previous month on behalf of their protégés. With this information, I was able to compare citizen advocacy and paid advocacy. A paid advocate, doing what is called individual advocacy, has only a limited number of hours per week to take actions on behalf of various clients. A citizen advocacy programme, by recruiting advocates, gradually creates a network of ongoing advocacy in the community, with the different citizen advocates spending far more hours in total than any individual could do.

There are other differences too. Paid advocates are trained and often quite skilled due to their ongoing work for different clients. Citizen advocates, in contrast, develop a deep understanding of their protégés over a period of months and years, and thus, despite lack of formal training, may be able to respond to their needs in a way impossible by any paid worker.

My conclusion in the small study was that a well-functioning citizen advocacy programme can compare favourably to paid advocacy in cost effectiveness as well as the quality of advocacy.

heather-lyn
Heather and Lyn, Citizen Advocacy Sunbury & Districts, http://casunbury.net

Decline

My study was part of our efforts to defend citizen advocacy from hostile attitudes among some of the staff in funding bodies, who looked at just the number of advocacy actions by paid staff. So they looked at paid staff doing individual advocacy and saw figures of maybe three to five actions per working day: the paid advocate was seeing several clients daily, perhaps going to a meeting with them or visiting to ensure they are being looked after. The funders then looked at citizen advocacy programmes and said, well, you made twelve matches last year. That’s not very many actions. The funders did not take into account all the actions by the citizen advocates, who are unpaid.

This sort of bias in measurement seemed ridiculous to me, and I suspected there was something deeper, namely that funding bodies want to maintain control through close monitoring of the operations they fund. When they fund paid advocates, the monitoring is easier than with systems advocacy or citizen advocacy, in which members of the public are empowered. Who knows what they might do?

The Department of Family and Community Services organised a review of advocacy across Australia. The department’s lack of understanding of advocacy was apparent in the very title of the review, which referred to advocacy “services.” Advocacy is not a service like housing or education, but rather a voice on behalf of vulnerable people with unmet needs.

The review provided the pretext for the department’s agenda, which turned out to put the squeeze on systems advocacy and citizen advocacy, applying pressure on programmes to convert to paid advocacy. Some citizen advocacy programmes closed rather than switch. Illawarra Citizen Advocacy changed its name to Illawarra Advocacy and diverted one quarter of its funding to maintaining its citizen advocacy operations.

This was a hard choice. The alternative might have been to cease funding of citizen advocacy altogether. On the other hand, an effort might have been made to find an alternative way of maintaining support for the dozens of relationships that still existed.

Over the following few years, the parlous state of citizen advocacy in the Illawarra continued. The crunch came in 2014, when a decision was made in Illawarra Advocacy to remove the one quarter of its funding directed to citizen advocacy and use it instead for paid advocacy. A letter went out to advocates informing them of this development. The letter displayed a lack of understanding and respect for citizen advocacy in saying that protégés could seek help from the paid staff. This failed to grasp that the relationships between protégés and advocates are freely given and not an arrangement that can be transferred at someone else’s invitation. It would be like writing to family members who had stood by their children or siblings with disabilities and saying that now they could turn instead to paid staff.

michelle-zak
Michelle and Zak, Citizen Advocacy of Atlanta and DeKalb, USA, http://www.citizenadvocacyatlantadekalb.org/relationship-stories/michelle-zak/

Conclusion

Illawarra Citizen Advocacy, when it was most active, was one of the world’s leading programmes, creating and supporting many dozens of relationships, including ones with vigorous advocacy on behalf of highly vulnerable people. Yet in the space of a few years, the understandings and commitment that had made this success possible dissipated. A combination of resistance to citizen advocacy by government bureaucrats and lack of understanding by newer staff and board members led to the drastic actions that undermined the programme.

The options for the future are not promising. Wolf Wolfensberger, whose ideas led to the initial setting up of citizen advocacy programmes in the US in the 1970s, recognised the way human services — hospitals, prisons, welfare — started out as idealistic attempts to improve people’s lives but then degenerated into operations to control people and serve the interests of the staff in the services.

Wolfensberger’s model for citizen advocacy was built on the insight that advocacy needed to be freely given: it was not paid or given course credit. This meant the advocates had the independence to speak out and challenge services that were failing to do the right thing. The advocates did not need to worry about losing jobs or connections: they were concerned only about the protégés.

Wolfensberger thought that finding protégés and advocates and making relationships between them needed to be done by paid staff, in order to attract and maintain people with suitable skills. But obtaining the money to support programmes was a challenge. Wolfensberger saw that funding needed to be diversified, so that if an advocate challenged a funding body, and the body withdrew funding in reprisal, the programme could continue. In the US, where citizen advocacy began, obtaining funding from several different sources has always been a challenging task, and citizen advocacy has never expanded to meet the huge level of unmet needs.

In Australia, obtaining funding from several different bodies turned out to be almost impossible: private funding is far less common than in the US. Australian citizen advocacy programmes were able to obtain government funding, and for a time there was a golden age of citizen advocacy (though it seemed difficult enough at the time). When attitudes within government departments hardened against systems and citizen advocacy, the programmes were highly vulnerable, and many of them made the switch to paid advocacy at the government’s behest.

Wolfensberger recognised that advocates needed to be unpaid, but did not foresee that having paid coordinates introduced a serious weakness in the model, one that would limit the expansion of citizen advocacy and eventually undermine most citizen advocacy in Australia. Perhaps it is time to consider a modification of the model, running all the operations of citizen advocacy on an unpaid basis. Not easy, but neither are the alternatives.

Brian Martin
bmartin@uow.edu.au

Acknowledgements I thank numerous individuals involved with Illawarra Citizen Advocacy for valuable comments and inspiration,.

The surgical sugar pill

You have an accident and fracture your collarbone, so you go to a surgeon who operates to fix the fracture. After you recover from the surgery, you feel better. So you and the surgeon think the operation was a success. What could be more straightforward?

Fractured-clavicle1

            But wait a minute. Perhaps you would have recovered just as well without surgery. You went to the surgeon just after the accident, when the pain was at its worst. What would it have been like if you had let the fracture heal on its own? Perhaps the surgery was unnecessary.

Some medical researchers have carried out studies to determine whether particular surgical procedures have any benefit. A comparison between surgery and no surgery can be revealing, but still it doesn’t capture the possibility that having surgery makes you think you feel better, even though it didn’t do anything.

One study randomly assigned patients with pain from osteoarthritis in the knee into two groups. In group 1, patients had arthroscopic surgery, a minimally invasive technique, to remove arthritic spurs from the knee. In group 2, patients had arthroscopic surgery without removing spurs: the surgeons made the incisions in just the same way as for group 1, but didn’t do anything else. Guess what? Patients in both groups improved, by about the same amount. The study showed that this particular surgical procedure had no therapeutic benefit over a fake or sham surgery.

Arthroscope1

            A placebo is a treatment that has no therapeutic effect. Instead of taking a pill containing a drug, instead you take a pill that you think contains the drug, but actually it just contains sugar or some inert substance. If you get better from the sugar pill, this is called a placebo effect.

In the study of arthroscopic surgery for arthritic pain in the knee, patients who received the sham surgery got better: this was a placebo effect of surgery. The study showed that the only benefit of the real surgery was a placebo effect too.

If you want to learn about this topic, read Surgery, the Ultimate Placebo by Ian Harris. It is clear and often engaging treatment by an experienced surgeon who has done research on the effectiveness of surgery. Harris thus is ideally placed to address the placebo effect in surgery. Indeed, he admits to having carried out many of the surgeries he now believes are no better than placebo.

Ian Harris
I
an Harris

            The first part of his book is a careful explanation of the placebo effect, and why it is so powerful in surgery. The placebo effect is often thought of as purely psychological: people think the treatment will make them better, and this actually makes them better. But the effect is more complicated than this. One key factor is that most people get better anyway, without any medical or other intervention. They go to a surgeon when they’re feeling worst; after surgery, they gradually feel better, but that might have happened anyway.

Harris makes a strong plea for carrying out research that compares surgery with alternatives, including no treatment, physiotherapy or some other therapy. Furthermore, the research has to be rigorous, because if patients, doctors or researchers know who is getting the “real” treatment, for example the arthroscopy that removes bone spurs, this will taint the results through various forms of cognitive bias.

Because of various forms of placebo effect, there is a long list of treatments used by surgeons that provide little or no benefit while causing serious harm. The problem is just as great in other medical specialties. Harris addresses surgery more than others because he knows it best.

placebo pill

            For thousands of years, doctors treated all manner of illnesses by bloodletting. They mistakenly believed disease was due to problems in the blood, so getting rid of it was the solution. Most patients recovered despite this harmful practice, so bloodletting continued. There were no double-blind trials in those centuries.

However, bloodletting is only an anomaly in that it persisted so long. Since then, there have been dozens of therapies that became standard, yet there was no good evidence that they worked better than placebo. Harris provides an illuminating survey of such useless or harmful medical treatments, and then examines many currently popular surgeries, casting a sceptical eye over ones for which the evidence is thin or non-existent. Among them are back fusion surgery, surgery for multiple sclerosis, hysterectomy and caesarean section.

Harris provides descriptions of the rationales for such surgeries, including biological plausibility and trials (without comparison with placebo), as well as reasons why the evidence is inadequate. His discussions are readable; references are given in a bibliography.

Then Harris tackles the reasons why ineffective surgeries continue to be done. This is a social analysis, and includes factors such as self-fulfilling prophecies, the pressure on surgeons from patients to act rather than do nothing, and financial incentives. Most disturbing is that most surgeons do not want to subject their operations to experimental comparison with placebo surgery.

Harris says that many surgical treatments become standard practice before they have ever been rigorously tested for effectiveness. Then, when researchers propose a comparison with placebo surgery, surgeons claim that this would be unethical, because there can be no benefit to the patients randomly assigned to the placebo operation. Harris spends considerable effort countering this objection, arguing that actually it is more unethical to continue with thousands of operations for which there is no good evidence of effectiveness.

achilles_rupture1
Achilles tendon rupture: surgery?

            Part of the problem is a double standard in relation to research and clinical practice. Researchers, to undertake a study, have to submit their proposals to review boards that examine the ethics involved. However, surgeons can initiate a new approach to a condition without any scrutiny. As Harris notes, asking patients how they feel after an operation requires ethics approval but undertaking the operation does not. The result is that many new surgical treatments become common practice without any good research to back them up, and rigorous studies are deterred by the ethics approval process.

“There is no restriction on what surgical approach a surgeon uses to do an operation, so what we have is a situation where it is deemed unethical to find out the results of a new procedure and publish them (without prior approval), but it is deemed ethical to do the procedure and not publish the results.” (p. 228)

Harris has been presenting his views to surgeons for some time, and many of them are resistant. They present all sorts of arguments to continue their usual surgical practice. One of them is that if there’s a placebo effect benefit from surgery, well that’s fine. “Believe it or not, this is a commonly used argument: if people are getting better after surgery anyway, that’s great – the fact that the placebo group also got better is no reason to stop doing the surgery.” (p. 235) Harris subjects this view to withering criticism, saying that performing ineffective operations is deceptive, costly and harmful.

da Vinci surgical system
Robotic surgery: better?

            Then there is the question of what to do about ineffective surgery. Harris has advice for patients, doctors, researchers, funders and society at large, all sensible. But change will be difficult due to patient expectations, the self-interest of surgeons, and entrenched double standards concerning clinical practice and research.

Ultimately, Harris is committed to a scientific approach, and wants it applied to surgery just like it is applied to alternative therapies, about which he is dismissive. “I applaud the work of sceptical societies, but they have one flaw: they rarely (if ever) turn their scepticism towards mainstream medicine. I guess it would muddy their attacks on alternative medicine and their position that mainstream medicine is science-based” (pp. 270-271).

Harris has rare courage: he is someone on the inside willing to cast a critical spotlight on professional business as usual. In writing Surgery, the Ultimate Placebo, he is taking his criticisms, usually presented in scientific forums, to a general audience. It will be interesting to see whether this succeeds, as he hopes, in speeding the uptake of scientific findings in surgery. In the meantime, anyone contemplating surgery can benefit from this readable and informative analysis.

Surgery, the ultimate placebo

Brian Martin
bmartin@uow.edu.au

An orchestrated attack on a PhD thesis

Judy Wilyman, an outspoken critic of the Australian government’s vaccination policy, undertook a PhD at the University of Wollongong. She graduated in December 2015.

On 11 January, her PhD thesis was posted on the university’s digital repository, Research Online. On the same day, anticipating an attack on Judy and the thesis, I posted a document titled “Judy Wilyman, PhD: how to understand attacks on a research student“, which turned out to be remarkably accurate in characterising the nature of the attack, which commenced within 24 hours.

The attack included a series of biased articles in The Australian by journalist Kylar Loussikian, numerous hostile blogs and tweets, a one-sided Wikipedia page, and a petition. Never before have I heard of such an outpouring of rage over the award of a PhD in Australia.

Loussikian-story

As a sociologist, this phenomenon is fascinating in its assumptions and motivations. I am hardly a neutral observer: I was Judy’s principal supervisor at the University of Wollongong, and quite a bit of the outrage has been directed at me, my supervision and my research. On the other hand, I have considerable inside knowledge, enabling insight about the claims being made.

Given the volume of hostile commentary about Judy’s thesis, it is not possible for me to undertake a comprehensive analysis of it in a short time. Therefore my observations here are preliminary. Rather than try to provide detailed evidence to document my generalisations, I merely illustrate them with a few comments made by signers of the petition against the university and the PhD. Down the track, I hope to provide a more detailed response, including to some of the treatments that address matters of substance.

SAVN attacks

The outrage over Judy becoming Dr Wilyman can best be understood by studying the operations of the group now calling itself Stop the Australian (Anti)Vaccination Network or SAVN. Since 2009, SAVN has been attempting to censor and discredit any public criticism of vaccination, using misrepresentation, ridicule, complaints and harassment, as I have documented in a series of articles. SAVN’s agenda has been to cleanse public discourse of dissent about vaccination. Judy Wilyman has been one of SAVN’s many targets.

savn

Judy had been under attack by SAVNers for several years. Therefore, I and others at the University of Wollongong correctly assumed there would be a hostile response to her graduation. Consider two hypotheses for how I and university officials would behave in this situation.

Hypothesis 1. We would push through a sub-standard thesis.

Hypothesis 2. We would take extra care to ensure that the thesis was of requisite quality and that all university processes were followed carefully. This would include sending the thesis to technical experts and choosing external examiners of high standing.

To me, it beggars belief that anyone would believe hypothesis 1, especially given that outsiders lack information about the operation of university processes. Yet in practice it seems that many outsiders, based on limited knowledge, assume that the thesis must be no good, my supervision was inadequate and the university was derelict.

The rush to condemn the thesis and the university can be understood this way: opponents assume it is impossible to undertake a scholarly critique of vaccination policy (or at least impossible for Judy to do so). Therefore, they condemn everyone involved in the process.

Furthermore, opponents do not acknowledge that scholars can differ in their evaluation of evidence and arguments. Instead, in various scientific controversies, including the vaccination debate, dissident experts are subject to attack.

Agenda-setting

Within media studies, there is a well known and widely discussed view that mass media do not tell people what to think, but are quite influential in determining what people think about. The articles by Kylar Loussikian in The Australian apparently were highly influential in getting a lot of readers to think about Judy Wilyman’s PhD. Their agenda was set by the mass media yet, as noted within agenda-setting research, few readers realised their focus of attention had been so influenced.

UoWooWoo

Associated with media agenda-setting is the significance of framing, which is about the perspective from which people see an issue. Loussikian’s articles framed the issue as about shortcomings of a PhD thesis and the credibility of the student, the supervisor, the examiners and the university. This frame was adopted by most (though far from all) commentators.

It is an interesting thought experiment to consider the likely response to a differently framed set of articles about the thesis, in which the central issue was an attack on academic freedom by SAVN over a number of years. However, The Australian was unlikely to adopt this frame. Indeed, a couple of years earlier, an Australian journalist had adopted SAVN’s agenda against Judy.

Assumptions about scholarship

Many of the attackers seem to have assumed that scholarship and criticism of vaccination are incompatible. How else could they justify condemning the university? An alternative view is to support current Australian government vaccination policy while accepting that it can be subject to a scholarly critique.

Respectful-Insolence

SAVNers for years have proclaimed that there is no debate about vaccination, by which they mean that there are no valid objections to the dominant view. To acknowledge that a scholarly critique is possible is to accept there is something to debate. Apparently this possibility is so threatening that it must be met by denigration and abuse.

Looking at the thesis

In “Judy Wilyman, PhD” I anticipated the sorts of attacks that would be made. This was not difficult: I simply listed the methods that had been used previously. Here’s what I wrote in a section titled “What to look for in criticism”:

When people criticise a research student’s work, it is worth checking for tell-tale signs indicating when these are not genuine concerns about quality and probity but instead part of a campaign to denigrate viewpoints they oppose.

  1. They attack the person, not just their work.
  2. They concentrate on alleged flaws in the work, focusing on small details and ignoring the central points.
  3. They make no comparisons with other students or theses or with standard practice, but rather make criticisms in isolation or according to their own assumed standards.
  4. They assume that findings contrary to what they believe is correct must be wrong or dangerous or both.

The attacks on Judy’s research exhibit every one of these signs. Her opponents attack her as a person, repeatedly express outrage over certain statements she has made while ignoring the central themes in her work, make no reference to academic freedom or standard practice in university procedures, and simply assume that she must be wrong.

My preliminary observation is that most of the hostile commentary about the thesis exhibits one or more of these signs.

petition

There have been numerous derogatory comments made about Judy, me and the university, most without providing any evidence and many based on misrepresentations of the thesis. Proponents of evidence-based medicine might ponder whether it is legitimate to condemn a thesis without reading it, condemn a supervisor without knowing anything about what happened during the supervision process, and condemn a university without having any information about the operation of university procedures. (Tell-tale sign 1)

Some of the opponents of the thesis have referred to comments made by Judy in other contexts. Likewise, questions have been raised about some of my other research. This is the technique of attacking the person in order to discredit their work. (Tell-tale sign 1)

When raising concerns about a piece of research, the normal scholarly route is to send them to the author, inviting a reply, not to immediately publicise them via journalists. An alternative is to submit them to a scholarly journal for publication, in which case many editors would invite the author to reply.

Alleging there are errors in a piece of work does not on its own challenge the central arguments in the work. For this, addressing those arguments directly is necessary. Very few of the critics of Judy’s thesis have addressed any of its central themes. (Tell-tale sign 2)

The intensive scrutiny of Judy’s thesis on its own does not enable a judgement of its quality, because it is necessary to benchmark against other comparable theses. None of her critics has attempted a similarly intensive scrutiny of any other thesis, much less a set of theses large enough to enable a fair assessment of her work. Experienced examiners have assessed many theses, as supervisors and/or examiners, and are well placed to make the required judgements about quality. This is in stark contrast to outside critics, many of whom lack any experience of thesis supervision or examination. (Tell-tale sign 3)

Why is there such a hue and cry over Judy’s thesis? Many theses tackling controversial topics or taking non-standard positions are published every year. Many of the critics of the thesis apparently believe no thesis proposal critical of vaccination should be accepted at an Australian university, and that for such a thesis to be passed necessarily reflects adversely on the university. The thinking behind this seems to be based on the assumption that criticism of Australian government vaccination policy is dangerous and should be censored. (Tell-tale sign 4)

I care. I believe in freedom of thought and speech, however this unscientific bullshit has to stop. It’s endangering lives — Kate Hillard, Broome, Australia

The net effect of these techniques is striking. A group of campaigners, with a well-established agenda of attacking critics of vaccination, sets out to discredit a thesis. Disdaining accepted scholarly means of critique, they feed material to a journalist. They take sentences from the thesis out of context and assert they are wrong, going public before offering the author an opportunity to reply. They ignore the central themes of the thesis. They show no awareness of scholarly expectations in the field, instead asserting the superiority of their own judgements over those of the examiners. Based on this charade of intellectual critique, they then condemn the thesis, the student, the supervisor and the university in an orchestrated campaign.

The role of expertise

SAVNers and quite a few other commentators state or assume that vaccination policy is a scientific issue, rather than one including a complex mixture of science, ethics and politics. These commentators then jump to the conclusion that only scientific experts are qualified to make judgements about vaccination policy. There is a contradiction in their discourse, though, because few of these commentators themselves have relevant scientific expertise, yet they feel entitled to make pronouncements in support of vaccination. So their assumption is that anyone, with relevant credentials or not, can legitimately support vaccination policy but no one without relevant scientific expertise is entitled to criticise it. They ignore the significance of policy expertise.

Wikipedia-Judy-Wilyman

This is a familiar theme within scientific controversies: critics of the epistemologically dominant view are dismissed because they are not suitably qualified. There is another way to look at policy issues: all citizens should be able to have an input, especially those with a stake in the outcomes. This participatory view about science policy has been well articulated over several decades, but few of those commenting about Australian vaccination policy even seem to recognise it exists.

Many opponents of the thesis and critics of the university have declared this issue is not about academic freedom but about academic standards. This claim would be more convincing if these opponents had ever made scholarly contributions about academic freedom or if they were not making self-interested judgements about their own behaviour. Their actions show their agenda is suppression of dissent.

The SAVN message

What is the implication of SAVN’s campaign against Judy Wilyman? And why do SAVNers and others continue to attack the University of Wollongong despite lacking any concrete evidence of any shortcomings in the university’s processes? There is one underlying message and two audiences. The message is that no university should consider allowing a research student (or at least an outspoken research student) to undertake a study critical of vaccination.

The first audience is the University of Wollongong. The second audience is other universities, which are being warned off critical studies of vaccination, or indeed of any other medical orthodoxy, by the example being set by the attack on the University of Wollongong.

There is also another message, which is along the lines of “Don’t mess with SAVN. We will launch a barrage of abuse, ridicule and complaints, and use our connections with the media and the medical profession, to assail anyone who crosses us.”

The original reason I became involved in the Australian vaccination debate is that I saw SAVN’s agenda as dangerous to free speech. If adopted more widely, SAVN’s approach would stifle discussion on a range of issues.

I am therefore buoyed by the support I’ve received from my colleagues, including senior figures, at the University of Wollongong, who believe in the importance of open debate and of scholarship that challenges conventional wisdom.

It is apparent that academics and universities need to do more to explain what they do and to explain the meaning and significance of academic freedom.

Postscript

See also my other writings about attacks on Judy and her thesis.

Healing via the brain

Norman Doidge tells about the amazing possibilities for healing by using neuroplasticity.

It was a fine, quiet morning early in January 1996. When I woke up, I noticed a high-pitched sound in my left ear. This wasn’t all that worrying — a couple of times every year, I would hear such a sound for five or ten seconds, and then it went away. This time was different. The sound continued indefinitely. It was a pure tone, continuous, and was there whenever I checked. Little did I know that checking to hear whether the sound was there was the worst thing I could do.

ringing-in-the-ears

This was tinnitus, the term for ringing in the ears. Some people have multiple tones, or thumping or rumbling sounds. Some have it so bad their lives are ruined; a few commit suicide to escape the condition.

My case was minor by comparison, but still distressing. As an amateur musician, I value my hearing greatly. My doctor said I would just have to accept it, as nothing could be done.

A few weeks later, there was a new, additional sound, louder and lower pitched, in my right ear. I felt sick to my stomach. I believed the standard view that tinnitus is irreversible and potentially progressive, getting worse with time. Luckily the second sound went away after an hour.

Then, fortuitously, I heard an interview on the radio with a scientist who described a new treatment for tinnitus. I looked it up on the web: “tinnitus retraining therapy.” What I picked up was the idea that tinnitus is not a problem in the ear but rather in the brain. All the time there are signals going from the ear to the brain, for example from blood flowing through the eardrums, but normally the brain treats these signals as irrelevant, and does not bring them to conscious attention.

tinnitus3-300x200

However, occasionally these routine signals are treated as a source of alarm and raised to consciousness. My brain was treating this high-pitched tone as something to be noticed — and I did. Tinnitus retraining therapy is based on changing the brain’s response.

Apparently if you are put in a soundproof room for an hour, there is a 90% chance you will develop tinnitus — the brain is constantly monitoring sound inputs, and when there are none externally, it starts to pay attention to internally generated signals. This helps explain why people with hearing impairment are more likely to suffer from tinnitus.

There are places to go for brain retraining, but I decided to apply the principles myself. I practised ignoring the high-pitched tone. When I noticed it, I would say to myself, “That’s boring” and turn my attention elsewhere. I became much more accepting of background sounds. Rather than craving silence, as before, I welcomed the capacity to hear naturally generated external sounds.

The high-pitched tone in my left ear gradually became less frequent and less noticeable and went away entirely after several months. My tinnitus was gone as a result of retraining my brain, and I did this by conscious efforts to change how I paid attention.

Neuroplasticity

With this experience, I was attuned to the idea of brain plasticity, which refers to the capacity of the brain to rewire itself. I read about therapies for stroke that seemed miraculous. The usual idea was that because stroke destroys part of the brain, disability was permanent: limbs would be useless, speech was impaired, and so on, depending on which parts of the brain were affected.

Constraint-induced movement therapy changed all this. Rather than using only the good arm and leaving the impaired one alone, this therapy in essence tied the good limb down and forced the patient to use the damaged limb intensively, up to hours per day, with gradually increasing challenges. For example, with your impaired limb, you repeatedly attempt to put a ball through a large hoop, then a somewhat smaller hoop, chalking up hours of forced effort.

constraint-induced-movement-therapy

The effect of this is not on the limb, which wasn’t directly damaged by the stroke – though it may weaken due to non-use – but on the brain, which was. The intensive training triggers major changes in the brain: to carry out the tasks, the brain uses unaffected parts of itself to carry out the limb function. The repetitive practice induces the brain to rewire itself. With this technique, in many cases normal or near-normal function can be regained.

In 2007, Norman Doidge’s book The Brain That Changes Itself was published. It describes constraint-induced limb therapy and many other wonders that can be achieved by taking advantage of neuroplasticity. Doidge, a psychiatrist, interviewed leading researchers in the field and wrote about their work in an engaging way, often using stories of individuals to motivate discussions of more technical matters.

Norman-Doidge
Norman Doidge

Doidge was making accessible information from the frontiers of research and therapy that challenged long-established views about the brain, and offered hope where there had been little previously. I thought the book was highly important and wrote a comment about it. I could understand why it became a bestseller.

Brain-that-changes-itself

When I was young, my friends and I somehow learned that the brain was a static and degenerating organ. We would humorously remind each other that the brain loses 50,000 cells every day, a relentless downhill descent. Now I was learning that actually the brain creates new cells one’s whole life. Just as importantly, it is constantly changing its structure as well as its content. New experiences do not just add memories, but change the way connections are made in the brain. Furthermore, this can be achieved by simply thinking.

One example is a study of strengthening a little-used muscle, the one that moves your little finger away from the ring finger. One group exercised this muscle by moving the little finger against resistance. The other group simply imagined doing this without moving the little finger. Amazingly, just imagining exerting muscles in your little finger can make it stronger. Actually, the muscle may not be stronger, but the mental circuits that activate the muscle become better developed, a process that also occurs in conventional weight training. Mental rehearsals of physical actions can be effective in many fields.

The Brain’s Way of Healing

Because of the popularity of The Brain that Changes Itself, numerous people contacted Doidge, introducing him to other work on neuroplasticity. His new book, The Brain’s Way of Healing, examines various techniques and therapies that utilise neuroplasticity. Doidge again uses personal stories by healers, scientists and individuals dealing with their own health problems to motivate his descriptions of approaches to healing. Many of the stories are remarkable.

Brain's-Way-of-Healing_248w_new

John Pepper first developed symptoms of Parkinson’s disease in his 30s. After many years with declining capacities, he started a programme of moderate “conscious” walking, using his powers of concentration to force his body to move in the conventional way, rather than in the usual habitual pattern. With this approach, he was able to keep his Parkinson’s symptoms under control. What seems to have occurred is that he forced parts of his brain to consciously take over functions that are normally controlled unconsciously by brain areas that were degenerating.

Another route to healing via neuroplasticity is to shine low-intensity lasers on parts of the body, even the brain itself. This somehow causes the body to reorganise scrambled nerve systems, that send unwarranted signals, and eliminate the problem. The treatments Doidge describes seem miraculous.

Doidge is willing to examine approaches to healing that are dismissed by mainstream medicine, though always putting these in the context of the science of neuroplasticity. Doidge devotes a chapter to Moshe Feldenkrais and his methods. The Feldenkrais method is normally thought of as in the same context as the Alexander technique or Pilates, namely as some sort of alternative health modality. Doidge, however, presents Feldenkrais as a pioneer in using neuroplasticity as a tool for recovery of normal body functions, decades ahead of the laboratory studies that would explain how his methods worked.

Moshe-Feldenkrais
Moshe Feldenkrais

Other tools for healing that Doidge discusses include listening to manipulated sounds and an electronic device placed on the tongue to stimulate neuromodulation. The picture that comes across is that the brain can be stimulated to rewire itself and to function more normally by using a variety of techniques, involving virtually any way of sending signals, including using the mind to do this.

Paying attention

The key to several of the methods of healing Doidge describes is focused attention. Sustained concentration is a powerful way of creating long-term brain change. The brain is like a muscle: physical activity strengthens the components that are exercised, and paying attention is a way of doing this.

The problem is when bad mental habits take over: unlearning these habits is difficult and requires sustained effort. Doidge tells about psychiatrist Michael Moskowitz who developed chronic pain and studied research in the area until he came up with a new approach.

Moskowitz’s inspiration was simple: what if he could use competitive plasticity in his favor? What if, when his pain started – instead of allowing those areas to be pirated and “taken over” by pain processing – he “took them back” for their original main activities, by forcing himself to perform those activities, no matter how intense the pain was?

What if, when he was in pain, he could try to override the natural tendency to retreat, lie down, rest, stop thinking, and nurse himself? Moskowitz decided the brain needed a counterstimulation. He would force those brain areas to process anything-but-pain, to weaken his chronic pain circuits. (p. 13)

Moskowitz went on to conquer his own severe pain and became a pain medicine specialist, helping many others. In this case, as with other therapies, focused attention becomes a way to reprogramme the brain.

paying-attention-2-600x582
Pay attention!

Focused attention is also a powerful tool in other contexts. In the form of deliberate practice, it is the key to expert performance in many domains, such as chess, golf, writing and playing the violin. In the form of meditation or mindfulness, it is one of the most potent tools for achieving increased happiness. In these and other areas, the capacity to focus attention needs to be combined with knowledge about what to focus on and how. Research and practice are opening up new avenues, all of which exploit brain plasticity.

Conclusion

Doidge tells many stories of recovery from seemingly hopeless conditions, including chronic pain, Parkinson’s disease, brain damage and autism. The overall message is that there is hope where previously there was none. However, the treatments are not sitting on a shelf to be purchased and applied. Quite a few of them are in the early stages of development, many involve specialised equipment, and all require practitioners to have advanced skills to obtain good results. Furthermore, not every technique will work for every sufferer. And not everyone can afford to travel to specialised treatment units or to provide the intense therapy required.

If you or someone close to you has any of the conditions addressed by Doidge, it may be worthwhile to read his books as a starting point, check out his website, and decide whether to investigate further. If doctors say you will never regain a function, they might be right, but invoking the power of neuroplasticity is making some of their predictions out of date.

exercising brain

Brian Martin
bmartin@uow.edu.au

Thanks to Chris Barker for valuable comments on a draft.

Vaccination passions

200490829-002

Vaccination seems to arouse stronger emotions than most other controversial issues. Jonathan Haidt’s research on the foundations of morality can help explain why.

When I started studying the Australian vaccination controversy several years ago, I was struck by the incredible passions aroused by the issue.

It is not a surprise that campaigners are committed and emotional – that was to be expected. I have studied other controversies, such as nuclear power and fluoridation, in which leading campaigners are personally invested in the issues. In the 1980s, the movement against nuclear war stimulated some fierce emotions: the future of humanity was at stake! (And still is.)

Vaccination is not as earth-shattering as nuclear war, but nonetheless evokes incredibly strong emotions. When acquaintances learn about my studies, many of them have asked me why this is so. I usually say I don’t really know, commenting that maybe it has to do with children’s health.

Both sides in the debate about vaccination put children’s health as their number one priority. They just draw different conclusions.

Supporters of vaccination say it is vital that every child be vaccinated (except for those for whom this is medically unwise) to create “herd immunity”, the protection for the population created when levels of immunity are high enough that an infectious agent cannot easily spread.

Critics of vaccination point to the risks of vaccination itself – it causes adverse reactions in a small percentage of children – and discount the importance of herd immunity, instead citing the importance of good nutrition, a healthy lifestyle and natural immunity acquired by contracting diseases.

There are other potential threats to children’s health, such as pesticides, x-rays, junk food, backyard swimming pools and parental violence. Nuclear war would harm children, to be sure, and continued global warming would be a major threat to the lives of future generations. However, vaccination is more personal: it involves a tangible intervention. Proponents can point to horror stories of deaths and disabilities from whooping cough, meningococcal and other infectious diseases, while critics can point to horror stories of adverse reactions to vaccines.

hiroshima7
War – bad for children

The rider and the elephant

Jonathan Haidt’s book The Righteous Mind offers additional insights into why the vaccination issue can be so polarising. Haidt doesn’t address vaccination, nor indeed any other such controversial public issue, but his ideas are relevant. (See also my previous comments about Haidt’s work, as applied to whistleblowing and deliberative democracy.)

Haidt, like many other psychologists, subscribes to the picture of the human mind as having two aspects or components. One is slow, logical, contemplative and careful. This rational component of the mind Haidt calls the “rider”. The other component of the mind is fast, intuitive and judgemental. Haidt calls this component the “elephant”. He argues, provocatively, that humans are largely driven by their elephants, namely the intuitive sides to their minds. The primary function of the rider, namely the rational side of the mind, is to come up with logical-sounding explanations for the judgements made by the elephant.

Elephant and Rider

This certainly fits what I’ve observed in the vaccination debate. Most people have made up their minds, and it doesn’t matter what evidence is provided. They just ignore what is unwelcome and come up with arguments to justify their positions. This helps explain why the debate never seems to progress: the elephants hold sway and the riders are active in justifying the paths chosen by their elephants.

Only rarely do I meet someone who is undecided and who wants to hear both sides of the argument and ponder the issue before making a judgement.

The foundations of morality

Haidt’s special contribution concerns the biological foundations of morality. Citing a wide variety of research and ingenious experiments, he identifies six values that seem fundamental to people’s views of right and wrong: care, liberty, fairness, authority, loyalty and sanctity.

Righteous_Mind

Haidt is especially interested in how these foundations of morality affect debates over politics and religion in the US. He discovered that libertarians, who oppose government regulations and support a free market, rely mostly on the value of liberty. He says that US liberals (who might be called progressives elsewhere), who support government interventions to assist the poor and disadvantaged, rely especially on the value of care, with liberty and fairness as additional influential values. He finds that US conservatives rely more equally on all six foundations.

This analysis helps explain why US people with different political orientations often seem to be talking past each other. What drives them is different. Their elephants are taking different paths, based on different intuitive moral judgements, and their riders give rational reasons to justify their choices. In this circumstance, rational analysis is, for most people, a sideshow that affects little.

Vaccination and morality

The six foundations of morality have obvious relevance to the vaccination issue. First consider care, something important for both liberals and conservatives. The morality of care derives, in evolutionary terms, from parents caring for their children. Groups of early humans with an innate commitment to protect and care for their own children were more likely to survive. In this sense, care is a fundamental aspect of most people’s sense of right and wrong: it is right to protect children and wrong to allow any harm come to them.

caring-for-child

Wanting to protect children is intuitive and doesn’t need to be taught. So it is easy to see why vaccination can arouse such passions: it is about care for children.

But the limitation of Haidt’s analysis, at least when applied to vaccination, is that it doesn’t say how the value of care can come to be applied in different ways. It is straightforward to feed a hungry child or to protect a child from a threatening animal. However, vaccination is not such a simple matter.

Supporters of vaccination see children as the prime beneficiaries. Critics see vaccination as a possible danger. They both appeal to care, but have come to different conclusions about how to achieve it.

Supporters point to the dangers of infectious diseases such as measles and chickenpox. Critics point to the dangers of adverse reactions to vaccines. Pointing to the role of the morality of care helps explain why the passions around vaccination are so strong, but does not explain differences in attitudes towards it.

In part this can be due to personal experience. Some children contract infectious diseases and suffer seriously from them, or even die. Parents, other relatives and friends see this and may be influenced to support vaccination. Other children suffer adverse reactions to vaccines; their parents, other relatives and friends may be influenced to oppose vaccination.

Other aspects of morality are also relevant. Liberty is a value based around personal autonomy and resistance to overbearing rule. In evolutionary terms, according to Haidt, it derives from the value to groups of subordinates ganging up on any individual who assumes too much power. When vaccination is pushed on people, for example through mandatory vaccination of soldiers or health workers or through financial penalties for not vaccinating, this may trigger resistance in those for whom liberty is a key moral foundation.

Authority, as a moral value, means accepting the prevailing systems of hierarchy and leadership. When governments, health departments and doctors support vaccination, this invokes the moral foundation of authority.

doctor-as-authority

Haidt says that conservatives are more likely to have authority as a key moral driver. However, this does not seem to fit the pattern for vaccination policy, given that many of the doctors and researchers promoting vaccination are “liberal” in Haidt’s sense. Still, it makes sense to say that vaccination gains support through the authority response in those for whom this moral foundation is salient.

Another moral foundation is sanctity. Disgust is one emotional response to a violation of the sense of sanctity or purity. Many people feel intuitively that certain practices are disgusting, for example incest or eating food that has fallen on the floor – even when the floor is perfectly clean. If that doesn’t disgust you, consider eating food that has fallen into a just-cleaned toilet. Sanctity, like the other foundations, is driven by the elephant, and people sometimes cannot give a logical justification for their reactions.

Some critics of vaccination may see the body as a sacred object that, when healthy, should not be assaulted by any medical intervention. If so, this can help explain their conscientious objection to vaccination. However, sanctity has declining relevance in societies like the US and Australia, where attitudes to personal behaviour have changed dramatically over recent decades.

Conclusion

To more fully understand how emotional reactions shape people’s views on vaccination would require research. Examining the role of the six foundations for morality elucidated by Jonathan Haidt is a promising basis for investigation. Each of the six foundations – care, liberty, fairness, authority, loyalty and sanctity – could play a role. However, the way that each of these values actually maps onto a person’s position on vaccination is not automatic, and may be influenced by personal experiences as well as the views of family and friends. This may be a fruitful area for study precisely because the passions are so great.

Brian Martin
bmartin@uow.edu.au

Thanks to Don Eldridge for helpful comments on a draft.

The daily fix

Caffeine is the world’s most popular drug, but it has some dangers.

caffeine-detox

Nearly everyone takes it but hardly anyone refers to it as a drug. I’m talking about caffeine.

It’s in coffee, tea, soft drinks, chocolate and some pharmaceutical drugs. It’s the “energy” in energy drinks. There’s a booming legal drug industry built around caffeine.

In the early 1980s, I was involved in a group called Community Action on Science and the Environment. One of our projects concerned caffeine. We studied the medical literature and produced a leaflet. Even back then, the evidence was pretty clear. If you’re getting more than about 200 milligrams of caffeine per day – the amount in two cups of coffee or four cups of tea – it’s quite likely you’re having adverse physiological effects such as headaches or digestive disorders. You might also suffer withdrawal symptoms.

Health_effects_of_caffeine
Source: wikipedia

If you want to be entertained while learning more about caffeine, get the new book Caffeinated by Murray Carpenter. He is a caffeine aficionado, touring the world to test and collect exotic products. The items on his shelf include:

Amp energy gum, 6 Hour Power energy shots, and Jitterbeans “highly caffeinated” candy. Cans of Red Bull, Rockstar 2X Energy, and Mega Monster energy drinks. There are bottles of Mountain Dew and Coke, and the cans of Diet Coke and Diet Pepsi … There is a small package of roasted and ground cacao, which I purchased in Chiapas, where it is grown. … (p. xii)

AmpGum

Carpenter also delves into the worldwide political economy of caffeine, probing the expanding industrial connections and advertising operations.

I’m unusual in not getting much caffeine. I don’t drink coffee, tea or soft drinks, but do have some chocolate. One benefit is that I get plenty of sleep and wake up refreshed, without the need for a pick-me-up. Despite this unusual level of caffeine avoidance, I wanted to know more about what I’m missing, for good and bad. Caffeinated provides plenty of information.

Benefits and adverse effects

There has been a great deal of research on the effects of caffeine, including using the rigorous method of double-blind trials. Caffeine undoubtedly has some positive effects, especially in mental acuity. If you are doing something that requires alertness – such as driving a truck long distance, or staying up all night to write an essay – caffeine is a drug of choice.

The benefits of caffeine have been studied especially in relation to two groups. The first is athletes, for whom caffeine can give an edge in motivation and performance, though it can be addictive, with the benefits less for habitual users. The second group is soldiers, who need to overcome fatigue; the military has sponsored lots of research.

combat-coffee

However, although caffeine provides alertness and energy, it is a short-term fix, and it’s not so clear whether regular users obtain much benefit compared to non-users. Caffeine can mask a lack of sleep, and performance might benefit nearly as much from proper sleep as from continual doses of the drug.

Carpenter quotes two researchers, Jack James and Peter Rogers, in a 2005 literature review in the journal Psychopharmacology as saying:

Appropriately controlled studies show that the effects of caffeine on performance and mood, widely perceived to be net beneficial psychostimulant effects, are almost wholly attributable to reversal of adverse withdrawal effects associated with short periods of abstinence from the drug. (p. 70)

After reading this, I felt my low caffeine intake was vindicated – until I read further to find that many other researchers disagree with James and Rogers, citing studies showing better memory and attention in a routinely caffeinated state.

For most people, though, caffeine is taken less for immediate performance benefits than as a habit, often attached to social rituals. Regular caffeine intake may be rationalised as a quest for a tasty drink, whether a good cup of coffee, a decent cup of tea or a refreshing cola. According to Carpenter, “The varied preferences for different forms of caffeine in all corners of the globe suggest that it is the drug itself that is the object of our desire” (p. 71).

caffeine-addiction

Advertisers do what they can to make their drinks attractive, but they seldom highlight the key ingredient. Imagine a drink advertised as “a quick and easy way to get your daily fix”.

Some drug users take a great interest in the taste of the delivery mechanism. There are wine connoisseurs, but have you ever heard of grape juice connoisseurs? Without caffeine, would the quest for a delicious coffee evaporate?

There is increasing research interest in the adverse effects of caffeine. One important problem is anxiety. Studies of individuals prone to panic attacks show that caffeine increases the risk of an attack; a placebo does not. Even more surprising is that caffeine can trigger panic attacks in individuals who never had them before, but who are close relatives of those who have had them. There’s apparently a genetic component in susceptibility to caffeine-induced anxiety.

coffee, coffee

Caffeine in soft drinks creates the physical dependence that keeps imbibers coming back for more. In this way, caffeine is implicated in the problem of obesity.

Another rising problem is mixing caffeine with alcohol, as in some drinks now on the market. The problem is that alcohol impairs judgement but the caffeine masks the effects, so young users take more risks.

Just 10 grams of caffeine are enough to kill you. This would be require chugging 200 cups of tea, but ingesting a lethal dose is much more feasible with tablets. I remember a high school science experiment in which we extracted caffeine from tea leaves. We were awed that such as small amount of a white powder, obtained from a seemingly innocuous source, could be deadly.

caffeine_synthetic
synthetic caffeine

Marketing caffeine

Marketers usually avoid mentioning the caffeine in their products. Starbucks emphasises the quality of its coffee, while energy drinks such as Red Bull refer to energy, not caffeine.

red-bull

Carpenter provides a fascinating tour of regulatory reactions to the increasing number of caffeine-loaded products. In the US, companies have long avoided regulation through an early classification of caffeine as GRAS (Generally Recognised as Safe), but the Food and Drug Administration has started paying attention to the plethora of new products delivering caffeine, and companies try to avoid regulation by setting their levels just below what has historically been treated as acceptable.

Downplaying caffeine’s role is disingenuous, but entirely understandable. Caffeine is a drug, so to admit that a drug is the primary attraction in any product is fraught with both regulatory and moral peril. But there is another reason to divert the public’s attention from caffeine’s key role in commerce. If Starbucks acknowledged the caffeine’s importance, then it would be more difficult to charge four dollars for a coffee drink. Consumers might prefer a Jet Alert tablet (you could buy a hundred for less than the price of a double latte). Starbucks Refreshers drinks, with fifty milligrams of caffeine, could easily be replaced at half price by a Diet Mountain Dew. (p. 206)

jet-alert-tablets

Ironically, caffeine’s popularity is triggering regulatory interest in many countries. When caffeine was consumed in ritual settings of drinking tea and coffee, its adverse effects were less visible, though some individuals over-indulged. With the expansion of caffeine intake through soft drinks and energy drinks, sometimes mixed with alcohol, the hazards are becoming more obvious, for example when youth take shots containing multiple caffeine tablets. The spotlight is now being thrown on all uses of caffeine.

However, although some health-conscious individuals may modify their intake of caffeine, and regulators attempt to control some of the more risky products, the caffeine-industrial complex continues apace. There is a lot of money to be made by hooking ever more customers into demanding their daily fix in the guise of a costly delivery vehicle, whether coffee, tea, soft drink, energy drink or chocolate.

energy-drinks

Reflecting on the benefits and risks of caffeine can be useful when considering policy on other drugs. All drugs have benefits and risks, after all, and there is no obvious cut-off point for deciding whether and when a drug should be banned, taxed, available only on prescription, or otherwise condemned or controlled. The adverse health effects of caffeine could be reduced by removing it from food and drink, but at the expense of creating a huge black market and stimulating organised crime. As you get your daily lift from caffeine, you can use your greater mental acuity to consider how best to address habits that are increasingly caffeinated.

Brian Martin
bmartin@uow.edu.au

Murray Carpenter, Caffeinated: How Our Daily Habit Helps, Hurts, and Hooks Us (New York: Penguin, 2014)

Caffeinated

Addendum

Melissa Raven offers the following historical angles on caffeine.

Coffee Cantata by Johann Sebastian Bach
The early 18th century enthusiasm in Western Europe for coffee amongst the middle classes was affecting Prussia’s economy. The country’s monarch, Frederick the Great, wanted to block imports of green coffee as Prussia’s wealth was being drained by the huge sums of money going to foreign exporters. Also the right to sell coffee was intended to be restricted to four distillers but the fashion for drinking coffee has become so widespread that the law was being flouted and coffee beans illegally roasted. The Prussian king condemned the increase in coffee consumption as “disgusting” and urged his subjects to drink beer instead. Frederick employed coffee smellers, who stalked the streets sniffing for the outlawed aroma of home roasting. However such was the public outcry that eventually he was forced to change his mind. As a satire on the whole affair, Bach wrote the “Coffee Cantata,” a humorous one act operetta about a stern father’s attempt to check his daughter’s indulgence in the much loved Saxon habit of coffee drinking.
http://www.songfacts.com/detail.php?id=18529

coffee-cantata

LONG before the multi-coloured hippie experience there was another group of long-haired men and women who went in for drink, drugs and sex. The Bohemians, as they were known, lived in Paris in the 1840s. Although their sexual and drinking habits raised eyebrows, what really shocked Parisians was their use of a stimulant drug in large quantities. According to a later medical textbook it ‘made the sufferer tremulous, subject to fits of agitation and depression. The sufferers loses colour and has a haggard appearance’. The drug was coffee,
Wells, Troth. (1984, October). Our daily fix. New Internationalist, pp. 14-15. http://www.newint.org/issue140/fix.htm

From Melissa’s PhD thesis (http://ro.uow.edu.au/cgi/viewcontent.cgi?article=4688&context=theses), p. 303
Hennessey (1993) documented an epidemic of deaths, predominantly female, due to kidney failure resulting from long-term use of compound analgesics such as Bex and Vincents in Australia from the mid-1950s to the 1970s. Although the damage was directly caused by the combination of phenacetin and aspirin, the high caffeine content of these products (APCs – aspirin, phenacetin, caffeine) fostered the dependence that led to the cumulative effects (p. 6). Advertising in influential Australian women’s magazines also played a major role in encouraging and indeed normalising use. Compound analgesics were constructed as the solution to everyday stresses experienced by women (particularly housewives).
Citation: Hennessey, Eileen (1993). A cup of tea, a Bex and a good lie down. Department of History & Politics, James Cook University of North Queensland.

A prostate story

Who benefits from testing to see if you have prostate cancer?

Being told “You’ve got cancer” can strike fear into a person’s heart. For middle-aged men, prostate cancer is the most common reason to hear this diagnosis.

Ive-got-cancer

Here’s how it usually happens. You have a simple blood test and receive a figure for your PSA, the prostate specific antigen. Anything above 4.0 is supposed to be a cause for worry, and possibly more tests. The number gives the PSA blood level in nanograms per millilitre.

I remember having the test done quite some years ago. A nurse rang to give me the results. She said “It’s 4.1”. I thought, this seems a bit high given my lifestyle. Then she said, “Oh, sorry, it’s actually 0.1”. That was okay, then. Little did I know.

An elevated PSA level is considered a cause for worry. The doctor might recommend a biopsy just to be sure, or the patient might want to know. This can lead to trouble. If the biopsy is positive for cancer, what next?

holy-psa-cropped

In the US, most urologists recommend removal of the prostate, an operation called a prostatectomy. This is supposed to get rid of the cancer. It sounds straightforward, but the operation is extremely delicate. The prostate straddles the urethra, the channel for urine and semen, and is surrounded by many sensitive nerves.

Sometimes the operation doesn’t get rid of the cancer. And quite often the operation has serious side effects: most men are left impotent and many become incontinent.

Instead of removing the prostate, another option is called “active surveillance” or “watchful waiting”, though it might better be called “worried waiting”. What this means is checking at regular intervals to see whether the PSA score is increasing.

Although most men in their 50s and 60s have cancer in their prostates, relatively few of them die of it. The cancer is usually slow-growing, so slow-growing that something else kills them first. They die with prostate cancer, not from prostate cancer.

Because the advantages of taking a PSA test are so limited, and the possible side-effects of unnecessary treatment are so severe, some researchers and policy-makers have argued that healthy men should not be screened using the test. On the other side are those – including urologists and advocacy groups, among others – who argue that PSA testing saves lives, and accuse the no-screening advocates of playing with men’s lives.

This debate has played out differently in different countries. In Britain, watchful waiting is more common; in the US, testing and aggressive treatment, especially removing the prostate if there is any sign of cancer, is standard.

Into this debate, there’s a new book titled The Great Prostate Hoax. The subtitle indicates the message: How Big Medicine Hijacked the PSA Test and Caused a Public Health Disaster.

Prostate-hoax

The author is Richard J. Ablin, assisted by Ronald Piana. Ablin has credibility in this area: he discovered PSA in 1970. And he is appalled at the widespread use of the PSA test in the US. He says that as the discoverer of PSA,

I have been linked to the 30 million American men … who undergo routine PSA screening for prostate cancer. The result: a million needle biopsies per year, leading to more than 100,000 radical prostatectomies, most of which are unnecessary. (p. 4, emphasis in the original)

Richard-J.-Ablin
Richard J. Ablin

Ablin provides one key point that undermines the argument for testing: the PSA test is not a test for prostate cancer. It is only a test for the prostate specific antigen, in extremely tiny amounts in the blood. This is not the same as a prostate-cancer specific antigen. Ablin says that using the PSA test is roughly as accurate as flipping a coin. Furthermore, the level of 4.0 as a warning of whether there might be cancer is arbitrary: it was more or less picked out of the air.

Researchers have been searching for a prostate-cancer indicator, but haven’t found one yet. The next question is how the PSA test ever became accepted, given its dubious diagnostic value.

This is where “big medicine” comes in. The PSA test does have some value. For men being treated for prostate cancer, the PSA level is an indicator of whether the cancer has returned, and therefore of how effective treatment is.

For a company selling a PSA test, there’s not much money to be made in testing men being treated for prostate cancer. But there are big bucks in screening. In the US, this means tens of millions of men per year.

Ablin tells the story of how the US Food and Drug Administration (FDA), which licenses medical tests, was swayed by emotion over rationality in approving a PSA test. For example, one of the test’s advocates, Jim Wise, used this approach:

Queried on the suffering of countless numbers of men harmed by PSA false positives, Wise circled the wagons around his insular community – men who claim they were saved by PSA screening – in essence, seemingly implying that their lives outweigh the harms to other men produced by false-positive PSA results. This is the common emotion-based type of exchange used by advocates to promote PSA screening. It’s a kind of flag-waving patriotism that people are loath to challenge; we’ve seen the results of that sheeplike mentality. (pp. 66-67)

But there is more to the FDA story than emotional pleas. Corporate interests played a role. Some FDA advisory committee members tried to expose the scientific shortcomings of the PSA test, but corporate connections prevailed. Ablin describes the FDA advisory committee meeting in considerable detail, down to individual exchanges, revealing a system that is corrupt at several levels.

FDA-approved-199x300

FDA officials tried to cover themselves by issuing warnings about inappropriate use of the test, but their inaction sent a different message. The FDA did nothing about massive off-label promotion of the PSA test.

Advocacy groups were part of the promotion of PSA screening; many of them are sponsored by the companies. Before long, PSA screening became the basis for a massive commercial enterprise. Screening is only the beginning. False positives keep the money rolling in. Men are told their PSA might indicate prostate cancer and should have a biopsy. Then, quite commonly, cancer is detected in the prostate, and prostatectomy is recommended.

An experienced surgeon can usually do a good job, but many men opt for a much more expensive method using a robot. The surgeon is still involved, but using a complicated piece of equipment. Robotic prostatectomies have become the primary method used in the US, even though there is little evidence they are any more successful than conventional surgeries.

If radiation is the preferred option, the latest generation of high-tech treatment is proton-beam therapy, in centres costing over $100 million to construct. Without sufficient patients, these centres would go bankrupt.

Then there are the side effects of treatment, though they might be better described as the main effects: impotence and incontinence. Ablin offers some moving stories from men whose lives have been seriously damaged by prostate removal. Some of them feel their manhood has been lost.

smoking-impotence
and so does a prostatectomy

Because of impotence and incontinence, there’s an additional market in medical fixes, for example penile implants and bulbourethral sling surgery. Ablin quotes experts saying that half of urology practices in the US would go out of business if not for the steady stream of patients whose problems begin with PSA testing.

From Ablin’s perspective, PSA testing is a gravy train for urologists and for drug and medical device manufacturers, with a seemingly inexhaustible stream of men entering the shadow of a prostate cancer diagnosis. Ablin calls PSA testing a hoax because there is no good evidence that it reduces the death rate and there is ample evidence that it causes a huge amount of suffering.

The Great Prostate Hoax is powerful testimony to the dangers of a profit-driven health system. It can be added to the growing body of writing about corruption in corporate healthcare, something that causes far more suffering and death than most of the hazards that exercise the public mind.

The book does have some limitations. It deals almost exclusively with the situation in the US, giving little attention to practices and debates in other countries. The US situation is important, to be sure, but insight into ways to control the PSA-testing juggernaut could be obtained by an examination of what is happening in countries where different attitudes and policies prevail. (For an Australian critical commentary on PSA testing, see Let Sleeping Dogs Lie?)

Another context for the book is screening for other conditions. A decade ago, H. Gilbert Welch wrote Should I Be Tested for Cancer? Maybe Not and Here’s Why, providing close scrutiny of the hazards of screening people with no symptoms. More recently, he and two colleagues extended their critique of screening to a wide variety of conditions, in a 2011 book titled Overdiagnosed: Making People Sick in the Pursuit of Health.

The implication of Ablin’s book is that any man without symptoms should be reluctant to enter the screening roller coaster. But is there anything else worth doing? Ablin doesn’t mention non-standard treatments of prostate cancer, for example hyperthermia, available in Germany. Nor does he mention the possibility of nutritional prevention. There is a considerable body of information about the possible benefits of selenium, zinc, fish oil, natural vitamin E and saw palmetto, as well as more general benefits from a diet with cruciferous vegetables. Hyperthermia and nutritional prevention are controversial, to be sure, but their hazards are far lower than conventional treatment.

For men concerned about their personal risks from prostate cancer, it is worth considering a range of information, about prevention, screening and treatment methods. In this, The Great Prostate Hoax is essential reading, especially to appreciate the intersection between science and politics. Ablin deserves the last word.

Medical industry profiteers have squandered trillions of health care dollars since the PSA test was first brought to the market. Given the utter failure of PSA screening, scientifically and clinically, why are we continuing to drain our health care system by repeating something we already know does not work. The late Albert Einstein defined insanity as doing the same thing over and over again and expecting different results. Repeating the same mistakes borne at the beginning of the PSA saga borders on criminal insanity. (p. 228, emphasis in the original)

Brian Martin
bmartin@uow.edu.au

Pharmacrime and what to do about it

Is the pharmaceutical industry more dangerous than the mafia? Peter Gøtzsche thinks so.

PeterGotzschePeter Gøtzsche

Did you know that the third leading cause of death in western countries, after heart disease and cancer, is adverse reactions to prescription drugs? Did you know that large pharmaceutical companies usually control the trials of their new drugs, and sometimes manipulate the published results by misclassifying deaths, excluding some participants and not revealing studies that came up with null results? Did you know that some of people listed as authors of drug studies published in leading medical journals have had little or nothing to do with the research, have not written the papers, and are paid for their symbolic role? Did you know that several major pharmaceutical companies have paid fines of over one billion dollars for corrupt practice? Did you know that government drug regulators in several countries have become tools of the companies they are supposed to regulate? Did you know that hundreds of thousands of people have died from drugs when the company executives knew about and hid information about the hazards?

This information has been known to critics of large pharmaceutical companies — commonly called big pharma — for many years. There have been powerful critiques written by former editors of medical journals and as well as exposés by whistleblowers. Now there is a new book that puts together the case against big pharma in a more comprehensive and hard-hitting way than ever before: Peter C Gøtzsche’s Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare (London: Radcliffe, 2013).

DeadlyMedicines

The bulk of the book is a critical examination of research findings concerning pharmaceutical drugs, serving to illustrate general points. For example, chapter 4 is titled “Very few patients benefit from the drugs they take,” seemingly a startling claim. Gøtzsche gives some hypothetical examples of how results of drug testing might sound encouraging but actually disguise a very modest effect, and how double-blind trials that are not properly blinded can give misleading results. He then cites studies of antidepressants to show that the actual situation is probably worse than his hypothetical examples.

Different chapters in the book deal with conflicts of interest, pharmaceutical company payments to physicians, drug marketing operations, ghostwriting of articles for medical journals and the inadequacy of drug regulators, among other topics. Each of these chapters includes case studies of particular drugs or company operations. Then come chapters about particular drugs, abuses and companies, for example chapter 14 on “Fraudulent celecoxib trial and other lies.” Gøtzsche exposes corrupt practices, including the hiding of trials that did not show a benefit, disguising adverse drug reactions, promoting a new highly expensive drug that is no better than an existing one, making false statements about the benefits and risks of drugs, applying pressure on drug regulators, and suppressing information about dangerous drugs on the market.

Gøtzsche relies heavily on published studies (including his own) to back up his claims: the book is thoroughly referenced, with numerous citations to articles in medical journals. Deadly Medicines and Organised Crime is in the tradition of rigorous and knowledgeable exposé. Some previous books along the same line include Marcia Angell’s The Truth about the Drug Companies and Jerome Kassirer’s On the Take. Angell and Kassirer had been editors of the prestigious New England Journal of Medicine.

Gøtzsche has impeccable credentials to write a critique of big pharma. He started his career working for a drug company, and saw dubious operations from the inside. He qualified as a doctor and then worked as a medical researcher for many years. Most importantly, he is a key figure in the Cochrane Collaboration, a group of medical researchers who scrutinise the full complement of studies of particular drugs, drawing conclusions about benefits and risks.

Undertaking a meta-analysis of drug trials seems like an obvious thing to do. What makes the Cochrane Collaboration significant is that it is largely independent of the drug industry. The industry’s influence is so pervasive that many trials are fraudulent or misrepresented, many publications are ghostwritten by company staff, and evaluations by drug regulators are biased due to company pressure. Being relatively independent of this influence makes an enormous difference.

As well as obtaining insights from his involvement with the Cochrane Collaboration, Gøtzsche has had personal involvement in trying to influence drug policy. Being from Denmark, on various occasions he has provided information to the Danish drug regulator on crucial issues, such as that a new drug is far more expensive than an existing one, but no more effective. Yet the regulator on many occasions has served drug company agendas by approving drugs, costing the government large sums of money and providing no added benefit to patients.

Here is Gøtzsche’s summary of problems with drug regulation.

We don’t have safe drugs. The drug industry more or less controls itself; our politicians have weakened the regulatory demands over the years, as they think more about money than patient safety; there are conflicts of interest at drug agencies; the system builds on trust although we know the industry lies to us; and when problems arise, the agencies use fake fixes although they know they won’t work. (p. 107)

In describing the unethical and damaging activities of the drug industry, with case after case of egregious behaviour, Gøtzsche sometimes expresses his exasperation. This comes across most strongly in the chapters on psychiatric drugs, many of which are useless or worse, cause addiction and massive damage, yet are widely prescribed due to massive marketing.

Gøtzsche’s book is filled with information and thoroughly referenced, yet perhaps its most striking feature is his claim that big pharma is organised crime, as indicated in the title. At first this may sound exaggerated, or just a metaphor, but Gøtzsche is quite serious. He looks at definitions of organised crime and finds that big pharma fits in all respects: the companies knowingly undertake illegal actions that bring them huge profits and kill people, and they persist in the same behaviour even after having been convicted of criminal activity.

At many points, Gøtzsche asks rhetorically what is the difference between the activities of big pharma in promoting addictive and destructive drugs and the activities of drug cartels producing and selling heroin.

organised-crime-cartoon

Calling big pharma organised crime is in a tradition of pointing to double standards in the way behaviour is labelled. The term “terrorism” is usually applied to violent acts by small non-state groups; some scholars have pointed out that many governments use violence to intimidate populations in way that fits the usual definitions of terrorism. They call this “state terrorism.”

If the operations of big pharma are a type of organised crime, except killing many more people than the mafia, what is to be done? Gøtzsche has a chapter spelling out ways to bring drug testing and regulation under control. One important step is for all drug testing to be done by independent scientists, rather than by the companies that manufacture the drugs. Another is to disallow payments from drug companies to physicians, researchers, medical journals, and regulators. Gøtzsche draws an analogy: what would people think if judges received payments from prosecutors or defendants? It would be seen as corrupt, of course. Company payments to physicians, journals and regulators should be seen as corrupt too.

doctorPayment176

Gøtzsche’s recommendations are sensible and, if implemented, would transform the way drugs are used in society. If this happened, company profits would plummet, which means that companies will do everything possible to maintain the current system. As well as saying what should be done, there is a need for a strategy for bringing about change, and the strategy has to involve citizen campaigners as well as concerned researchers and physicians. Just as the movement against smoking has involved a wide range of campaigners and methods of action, so too must a movement against corruption in healthcare. Deadly Medicines and Organised Crime is not a practical manual for such a movement, but it is essential reading for movement activists, especially so they will know what they are up against.

For readers thinking about their own health, and the health of their friends and family members, Gøtzsche provides important messages. He suggests not taking any drug unless it is absolutely necessary, because benefits are minimal and there are always potential harms. In this category would be included antidepressants and drugs to lower cholesterol and high blood pressure, for example. If you’re going to take a drug, then it’s usually better to take an old one, because newer ones are probably no better, cost vastly more, and are less well tested for harms.

olderisbetter

If you want to know more about the drugs you take, seek independent advice. That’s not easy, because so many researchers, medical journals, physicians and regulators are in the pay of the industry. Reviews by members of the Cochrane Collaboration are a good place to start. So is Deadly Medicines and Organised Crime. Gøtzsche provides enough references for even the most assiduous reader.

Brian Martin
bmartin@uow.edu.au

 

I thank Melissa Raven for useful comments on a draft of this comment.