Sense about Science: Follow the Patient

David Healy, MD
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Editorial Note:  This is the fourth of four posts on David Healy’s website about the links between Sense about Science and AllTrials.  The first was Follow the Rhetoric.  The Second was First Admit no Harm. The third was Follow the Lawsuit.

The simple act of defining doctors or patients concerned about adverse events as “critics” is a rhetorical stroke that marginalizes concerns – makes you a one-percenter rather than one of the ninety-nine percent.

The Ninety-Nine Percent

In addition to labeling “critics” as anti-vaccinationists or Andrew Wakefield clones, another criticism aired recently is that “critics” are anti-capitalism.  In a recent Send in the Clowns Act, typical of the genre, Dave Nutt, Guy Goodwin and Dinesh Bhugra attempting to rally psychiatrists behind the pharmaceutical industry flung this jibe at Peter Gotzsche who has done more for real data access than anyone else linked to AllTrials.

The irony is the pharmaceutical market is far from the free market as envisaged by Adam Smith or the Chicago School.  This is the least free market on earth.  Pharma’s control of information is even greater than was the control of information in totalitarian states like Stalin’s Russia.  Corporations have traditionally seen the market as something to control rather than abide by. Pharma is Living Marxism’s dream – complete control.  (Determining paternity can be difficult but Living Marxism appears to be one of the progenitors of Sense about Science),

Second, like Athenian or early American democracy, this “democracy” has apparent citizen voters and non-voting slaves. In this “democracy”, doctors are the citizens (for now) and patients, usually called consumers although more accurately seen as helots, are the slaves with no say in their own condition and only able to access the goods through their owner (doctor).

Was the Soviet Union a Good Thing?

Bad Pharma was last year’s London Review of Books‘ academic book sensation.  This year it’s Thomas Piketty’s Capital in the Twenty-First Century – a major treatise on the difficulties linked to growing inequality.

Welcomed by many, including the Governor of the Bank of England, Piketty has drawn fire from David Graeber, one of the leading lights behind the Occupy Movement, because he [Piketty]

“denounces the lazy rhetoric of anti-capitalism.  He has nothing against capitalism.  He doesn’t seem to understand that it doesn’t matter how many books he sells or summits he holds with world leaders,… [or how many pharma companies sign on to AllTrials] if he only wants to save the capitalist system from itself this is the reason such reforms will never happen.  The 1% are not about to expropriate themselves.  ..  If we want an alternative to stagnation, impoverishment and ecological devastation, we’re just going to have to figure out a way to unplug the machine and start again.”

Graeber’s argument is that capitalism is savage and we only had a relatively benign social democratic interlude between 1945 and 1989 because the Soviet Union forced capitalism to make some effort to compete for the hearts and minds of normal people.  Now that this counterweight is gone we see capitalism in its true colors and it’s difficult to see what can get us back to the Halcion days of 1968.

The New Berlin Wall

The reason to mention Graeber or Piketty is not to endorse either view but to put the Access to Clinical Trial Data issue up there as a Building of the Berlin Wall moment of epochal importance.

Even though American healthcare is being brought to its knees by the forces involved, waiting for an American President to give a speech outside the gates of GSK or Pfizer and say “I am a Patient” is about as likely to be rewarded as would waiting for Krushchev to make a speech near the Brandenburg Gate saying “Ich bin ein Berliner” have been.
When or what might lead to the Fall of this new Corporate Totalitarianism?

Far from suggesting that everyone should read Piketty and Graeber to find out what we need to do next, a better bet would be to get Piketty and Graeber to visit a doctor’s office.  They could learn a lot about what might be needed to put the financial system and the environment right from witnessing the experience of the average doctor or average patient.

When a patient comes to a doctor, Piketty and Graeber will see the almost extinct embers of market forces being snuffed out by the counter-vailing forces of corporate control.  They will see both doctor and patient become viscerally aware of this when treatment hits a bump in the road.

Medical Democracy?

For a century beforehand, doctors had stood in implacable opposition to the rapacious and dangerous exploitation of patient by the patent pharmaceuticals industry.  All of a sudden, ushered in by medical research and the second world war, the decades of the 1940s and 1950s threw up a cornucopia of new drugs from which industry could profit without having to be quite as egregious in its marketing as before.  These drugs marketed themselves.

This period through to the late 1960s offered a medical equivalent of the social democracy, semi-admired at least by both Piketty and Graeber. The relationship between doctors and patients then briefly combined an older medical professionalism with a cornucopia of new drugs and the surgical and other treatments that these drugs made possible.  This was just before Ivan Illich fell asleep and had a nightmare he named Medical Nemesis. As Freud might have told him, the figures in our dreams are often stand-ins for other more threatening ones – in this case Evidence Based Medical Nemesis.

While prescription only arrangements worked well initially, making the miracles of 1950s pharmacological breakthroughs available through a system like prescription only medicine meant that the system carried within itself the seeds of decadence.  No provision was made to maintain medical wisdom and professionalism in the face of a marketing that would be targeted on doctors – central to which was the notion that what we claim our RCTs have shown should trump the evidence of a doctor’s or patient’s own eyes.

Bow to the Bureaucrat

When it comes to an adverse event now, in scenes worthy of Kundera or Solzhenitsyn the system now requires doctors and patients (even Nobel Prize-winning Patients) to defer to a bureaucrat who sits in EMA or FDA who, if they come from a medical background, is there because they don’t like meeting patients, has probably never used the drug being reported on and was not trained in the first instance in the area of medicine at issue.

If doctors pay heed to the bureaucrat, there is no possibility of feedback from the marketplace.  If they don’t pay heed to the bureaucrat, the system will squash them.  Meanwhile even the perception of possible risks is being ironed away by groups with names like Sense about Science who manage Risk but who do not have the lived experience of grappling with a treatment related hazard in their own lives or the lives or their children or partners or parents.

This divorce sets up conditions of extreme alienation.  It is profoundly disempowering. Despite doctors being trained to be ever more civil, patients who have a Drug Traffic Accident become nearly invisible to their doctors.  They are just healthcare kill.

The Doctor who Came in from the Cold

It’s difficult to convey to those who have not been affected what is involved.  To mark the death of Gerry Conlon this weekend, let’s try it like this.

In the mid-1980s, four innocent Irish people were jailed following a pub bombing in Guildford England.  Convinced there had been a miscarriage of justice, a lot English people worked hard to overturn the sentence.  Giving a view on the growing evidence that the four were innocent, Lord Denning, the Master of the Rolls, said

“If their story is right, it is such an appalling vista it cannot be. Wrongfully convicted prisoners should stay in jail rather than be freed and risk a loss of public confidence in the law”.

Exactly the same thing happens patients suffering an adverse event.  Confidence in a brand – a branded drug is not the same thing as a medicine – requires the patient’s experience to be invalidated.

As part of ensuring that it will be invalidated, extraordinary pressure is brought to bear on doctors.  Few of them are consciously aware of the pressure – that their consultation room is really a Checkpoint Charlie.

(I gave a talk at the recent How The Light Gets In Festival in Hay on Wye – The Persecution of Heretics – that attempts to make explicit the usually implicit pressure.  The talk was recorded and is supposed to be available to view in a few weeks time).

In essence, doctors have a choice.  They are either the steamroller that rolls over their patient or the steamroller rolls over them.

The moment needs its John Le Carre to write “The Doctor who came in from the Cold.”  Just as I write this, news is coming in that some senior doctors have had the temerity to go public with claims – that despite Ben Goldacre’s paper on statins – these drugs cause significant problems.  Will they be shot as they attempt to get over the Wall?

Healthcare Kill

Everything is aimed at stopping a doctor and patient working freely together.  This is the moment that should create value for the economy, for science, for the doctor and for the patient. It is increasingly the moment when value is destroyed, and lives are impoverished as a consequence.

Key to what has happened is the climate changing effects of a fetish for RCTs and the operations of groups like Sense about Science. In the 1960s, drugs were poisons and the doctor and patient fully expected things to go wrong.  The magic lay in bringing something good out of the use of a poison.  Now that poisons have been put through the clinical trials blender and become fertilizers, no-one expects anything to go wrong.  When something does go wrong, the patient becomes a loser and is ostracised.  The herd moves on leaving the wounded animal to the hyenas.

The Iron Curtain

Graeber outlines eloquently how being middle class in America in the 1960s had nothing to do with income but was better described as having a sense that the system worked for you – that a bailiff was not going to turn up outside your door and repossess you or that a health event would not bankrupt you.  They didn’t have a middle class behind the Iron Curtain.  But now an increasing number of people in the West have lost this sense of security – they are in an increasingly squeezed middle.

It’s exactly the same for many doctors.  A middle class doctor was one who could see the benefits and hazards of treatments.  Now it is no longer possible for a doctor to see that treatments have hazards – how else can we explain doctors putting patients on 10 or more poisons at the same time.

A curtain was drawn through the middle of most doctors consulting room somewhere around 1989, and we now interview patients through this.  Its a curtain of  Guidelines. Guidelines for treating Hypertension, Diabetes, or Depression.  On my side of the curtain, just as in the movie The Lives of Others, there are an increasing number of people scrutinizing whether I adhere to the latest guideline or not.

I want to be able to Occupy My Office again.  To be able to drag the curtain back so the patient and I can see each other.  To be able to tell the watchers, that “In here we operate according to Guidelines for Treating People, and the first commandment is ignore all Guidelines for Diseases” (See The Macbeth Test).

At the end of every year doctors have to fill an end of year Continuing Professional Development prospectus outlining what we will do next year to keep abreast of the things we need to keep abreast of. For several years now I have put as one of my objectives – to avoid being sacked for offering Good Medical Care (GMC). The problem is I don’t know how to avoid this.

Ghost Bodies

There used to be a communication between my consulting room and the chambers of Professional bodies for Physicians, Psychiatrists, Paediatricians, Geriatricians and Surgeons.  But now the Presidents of these bodies swan around the world chairing meetings that would not exist but for Pharma largesse, and writing editorials denouncing doctors who might put their patients interests before those of pharmaceutical companies. These bodies and their Presidents now subvert rather than protect the exercise of medical judgement.

The alienation goes right to the top.  In the 1960s the bosses of pharmaceutical companies would have been thrilled to have a meeting with the Presidents of major professional bodies.  Now junior functionnaries in Pharma treat our representatives with visible contempt.

As doctors began to fail in their role as advocates for their patients, patients increasingly formed self-defense groups to look after their own interests.  But this model was infiltrated by Pharma on a here today but gone tomorrow basis depending on the patent life of the latest blockbuster drug.

Now we face a situation where treatment induced death has become one of the commonest causes of death – perhaps even the leading cause. Now more than ever we need groups like Public Citizen.  We need a medical equivalent of the Sierra Club or a group that in UK might be called The Royal Society for the Protection of Patients (& Doctors) – RSPPD.

How would Piketty and Graeber view AllTrials?

RxISK: We are the Ninety-Nine PerCent

RxISK’s motto could easily be “We are the Ninety-Nine Percent.”  It’s for people who want their engagement with their doctor to count for more than his engagement with companies and their “Evidence.”  It’s for doctors who want to occupy their own offices again.

Its for doctors and patients who believe that the information that is extracted from us in the course of clinical trials should not be kept secret from us.  That if we create the value, we should at the very least not be damaged by what we have helped create.

It goes beyond providing information in the way Public Citizen does. It aims to get patients and doctors engaged – to each other.  Good marriages are held by most to be the foundation of social order.  We have a Dream.

Over 18 months ago, RxISK attempted to open up a debate on the ambiguities and conflicts at its heart.  Doing what it does, could it operate as a business in the marketplace or should it be a Foundation or an “Occupy your Doctor’s Office” movement?

It seems clear that pharmaceutical companies are legally obliged to access any adverse event data they are aware of.  But even though they know we are collecting this information, they have not approached us.  Companies seem unlikely to endorse RxISK in the way they have endorsed AllTrials.

They seem to be pushing us toward finding something more co-operative – perhaps something that is not out there yet – perhaps something that David Graeber or Thomas Piketty might have views on. Perhaps something you have views on.

19 COMMENTS

  1. This article covers a lot of ground. I appreciate the spirit behind it, but there are a couple of points regarding Marxism with which I must disagree:

    I feel it is inaccurate to say that “the dream of Marxism” is “complete control,” unless what is meant by that is “complete control over work by the people doing the work.”

    Though the USSR used Marxist rhetoric, it’s economic system, at least in the industrial sector, was state capitalism, because the state, rather than the workers, controlled the means of production. Marx, in contrast, believed that the workplace should be democratic.

    • Yeah, that’s what I was going to say. The one party, command society, and totalitarian government was Lenin and Stalin’s doing. Marx wanted workers to own the means of production and some vague sketch of an idea.

      What’s happening with BigPharma is everything Marx warned us about. He got capitalism’s number right away. Former Soviets now say that everything they were told about communism was a lie, and everything they were told about capitalism was the true.

    • Good point. Btw, USSR and other countries in the block did not really considering themselves “communist” but rather countries in a transition period which was supposed to lead to communism. That stemmed from the idea expressed by Marx that the capitalist system is inevitably heading for destruction from within and “it has to get worse before it gets better” getting kind of twisted along the way. In a communist system the workers are supposed to control the means of production, not the state.

  2. I think Adam Smith said (something like) that: when a group of people with common interests get together they instinctively conspire to defraud the Public. ‘Mental illness’ as a brain disorder, and tranquillisers as treatment is a good example of this.
    ‘Deadly Medicine and Organized Crime’ sounds way over the top – but its completely true. Its even become part of the culture – we now accept being killed by medicine.

  3. Heres how to deal with it. Basically stay away from medical doctors period that means the AMA the APA the ADA (dentists). Of all that they have to offer the average person , only 35% of it at the most has any value to the human being. Their foundational theory is Hors_shi_.( Read Robert Youngs book “Sick and Tired”.)They are able to deal with physical trauma like a broken bone but that is only from the experience of numerous wars and wanting to return the wounded to the battlefield for the benefit of the elite robber barron families. After your bone is set get out of their hands as soon as possible.Use natural healing methods as recommended by Traditional Naturopathy ( 2 names of this type of natural doctor practicing today that have web sites and available much explanation are Richard Schultz ND (www.herbdoc.com) and (Linda Page ND her book “Healthy Healing”) also you can’t go wrong with the Max Gerson Clinic in Tjuana Mexico run by his daughter Charlotte Gerson.
    Don’t let your kids get vaccinated. Use a Homeopathic doctor and their remedies instead if necessary.Have all metals removed from your mouth . All root canals removed. Be checked for cavitations. Use Hal Huggins trained dentists. For info see what they do at the Paracelsus Klinic in Switzerland (Dr. Rau) There they treat the wealthy.But you can still learn.
    I don’t have to tell you about psychiatry their is plenty of info here at MIA. All I can say is if they capture you get out of there hands as soon as possible.
    Eat organic food , mostly If not all vegetarian. DISTILL YOUR DRINKING WATER, Buy food at organic farmer’s markets.
    Learn an energy healing system like YuenMethod.com or some other authentic system.
    I know many will not believe me nevertheless it is the truth regardless of what your formal education taught you.
    Toward a path out of the quagmire. And of course there is more to learn.

  4. Thank you, Dr. Healy, for your honest assessment of some of the problems within the mainstream medical community, and all you are doing to try to improve the medical system.

    I’m so glad that even some doctors are beginning to share my “odd delusions” that defaming and poisoning patients with egregious coerced and forced drug cocktails, so that the doctors may cover up easily recognized iatrogenesis, ADRs, and medical evidence of the sexual abuse of a child, is not “appropriate medical care.”

    But please pardon my disgust at the many slave “owner[s] (doctor[s])” who have delusions of grandeur murdering their patients (“slaves”) is “appropriate medical care,” after having taken the Hippocratic Oath.

    • Someone Else – I follow you up to and through here for this thread, to the best of my ability to recount and apply the facts of your personal case history to what you mean to convey with critical explanations of your thoughts here. Much of that has come through piecemeal, although you probably couldn’t believe the extent of the outrage and the degree to which the offending parties are kept legally insulated, and this leaves you frustrated no matter how determined you are to rid yourself of negative affects on your family and yourself. Take it easy if you can, and let me see how I understand you below….

  5. Fred – I am glad to see that you don’t care if I believe you, but I do believe that you believe you and that you’re allowed– And I might be convinced of some of these edicts power and worth, as far as my experience informs me.

    So, in line with the total ideas offered up, what about some nuance on the doctors reasons for acting to benefit robber barons? I see that possibly, but not exclusively. Frequently it has to be the case that they mean to sustain the military, deliberately saddling the men (and women these days) with their confrontation with Destiny. (In fact, when you keep women in every equation regarding power and freedom you get the clearer picture of history and race, correct? And in this country race has the political dimension of its significance functionally and rhetorically sustained, whether coming or going. What about folks on the short side of their Native American heritage? How would that do for polite and comfortable Anglo and, most def., Catholic ladies and fellas?)

    I don’t want to distract you about this, but as far as the matters of authority governing doctors’s intentions, it has never not been their focus to subserve the status quo and solidify their professional dominion in service of themselves. David Healy is remindingthem gently but firmly that they aren’t doing this right.

  6. Travailler-vous,

    “As far as the matters of authority governing doctors’ intentions, it has never been their focus to subserve the status quo and solidify their professional dominion in service of themselves.” I’m not certain this is actually true in regards to the APA, which I presume is what you mean when speaking of the “authority governing doctors,” of which you speak? However, I also don’t think the word “subserve” necessarily meshes with what I personally have seen change in my life, from a societal control aspect. But my perspective is a unique one, and that of one person.

    When I was a child, the medical community seemingly had much less control and power. The spiritual leaders seemed to have much more influence. And as a bank president’s daughter, I know the ethical bankers garnered much more respect than the doctors, as well. In recent years, the religious leaders seemed to have lost respectability, albeit for good reason – one example, corporate cover ups of pedophilia. And the banking industry mortgage debacles have resulted in the banking industry becoming a sick joke, resulting in financial harm to millions of middle class Americans, and all in the world trusting in honest, viable, and responsible bank lending practices – although this is largely the fault of the Republican and Democrat politicians, and their policies.

    Now, did the APA subvert these other societal leaders to gain their sole role as the only “respectable” profession left? I doubt it, although they do give a lot of money to the government. But are doctors currently abusing their power? The US is not supposed to have a caste system, which is how the medical industry is set up. Instead all people are supposedly “created equal with certain inalienable rights.”

    Yet, as Dr. Healy has pointed out in his article, the medical community has used it’s relatively newly obtained now unchecked power, to work to transform our entire society into one in which the doctors are the “slave owners” and all others are the “slaves.” This is unethical abuse of their power. And putting doctors at the top of the societal structure has historically been proven to be unwise, because even the nation of India, which has a long standing caste system, knows it is unwise for the doctors to be at the top of the caste system.

    I do agree, “David Healy is reminding the [medical community] gently but firmly that they aren’t doing this right.”

    • Okay, Someone Else, I think you subjected yourself to a misreading of my comment. But you turned it into the opportunity you were looking for, there at the end– or close enough for government work.

      I suggested that medical doctors since they could, not excepting the APA who profiteer most inhumanely at present, have tried to get control of who can and would obtain their services, who they would answer to and how to influence and overwhelm and occupy those overseers of their industry, and will add here that they hate and gripe and fib every time studies show the value of cutting back on their aggressive programs for preventing the worst of problems. This, again, has never not ended up only creating better conditions for medical riffraff to get off scot-free, to overcharge, to discriminate at whim, and to offer degraded services and poorer and poorer information by routine, attention-getting, time-demanding methods of talking you out of your own better judgment.

  7. I know that is B & W in the cursory analysis, but not knowing medical history better, I see it serves the right purpose to say that the malfeasance inherent in prestigious caregiving and specialization of training leads here as progressively as we can very well see it to become undernoticed and ever-present simultaneously, worse than ever before.

  8. On the movement being “anti-capitalism”. Well, I can’t speak for the movement as it is but I see that many people here do link the current economic system (whether you name if capitalism or corporatism) to the roots of the problem.
    In a system where corporations have more right than people, where corporate secrecy trumps public interest, where drug advertising is legal and legal bribery is rampant, where clinical trials are sponsored and/or made by pharma, and so on and so forth – there’s little place for improvement.

    • I speak for myself only. The movement is, with varying degrees, anti psychiatry even if some do not like the word, including ironically Thomas Szasz. That’s where the agreement ends.

      I am pro capitalism, pro free markets and anti government (or pro small government if you will).

      And please spare me from a big pharma this, big pharma that. Big pharma is the prime example of crony capitalism/corporate welfare in which big government and big pharma collude to limit people’s individual freedom and market freedom. The largest, by far, customers of big pharma are, including in the US, government programs, agencies and hospitals. Do you think that psychiatry would have the power it does without its government sanctioned prerogative to impose itself onto innocent people? Give me a break!

      • Well, people seem to have different views on what should be done about the problem but I think we can though all agree – we are all against fascism:
        “Fascism should more appropriately be called Corporatism because it is a merger of state and corporate power”
        ― Benito Mussolini
        Whatever one thinks the appropriate role of the state should be it certainly should not be to serve the private corporations over ordinary citizens.
        For US citizens – check out this initiative to get corporate money out of elections:
        http://www.wolf-pac.com/