How did we get to the point where healthcare itself is sick – where we have as Annemarie Mol brings out become consumers of healthcare products rather than people whom doctors and nurses care for when we are at our most vulnerable?
The breach of trust in modern healthcare comes close to a mother poisoning her babies in their infancy.
From luxury to basic
Back in the 1950s or 1960s depending on where you lived many of our parents thought about buying a car. It was a time when people didn’t need cars. They could get to work easily by bus, train or bike. The local shops were close so you could walk to get all the bits and pieces you needed or send a child who would usually run.
A car was a luxury.
But when enough people bought them, cars began to become a necessity. Cars made it possible to live further out of town and living further out you needed a car. Work was now too far away for a bus. The local shops weren’t local in the way they had been before. You shopped at weekends for the week in supermarkets and to get there you needed a car. And pretty soon the range of things in local shops began to seem limited.
As the number of cars grew, cities changed and the city itself became a vehicle to sell cars. This is what marketing departments dream of – where everything conspires to sell the product. Once our way of living meant we needed cars, companies could market types of cars without having to persuade you that you needed a car.
Cars can be a great thing. If we get taken seriously ill having an ambulance to get us to hospital quickly may be life-saving. But cars are also inextricably linked to a climate change, a permanent change in the world in which we live, a change of the kind that most of us as individuals find hard to see how we could influence.
Most of us find it equally hard to see how we can resist the climate change taking place in healthcare – fabulously illustrated this week with all the hype surrounding Solanezumab, which seems all about bolstering the share price of Eli Lilly and creating an industry that will persuade people over the age of 50 to start taking it and similar drugs, and pays little heed to the agitation and despair that may be occasioned in many, and the almost Witch in Macbeth like “Keep the word of promise to our ears while breaking it to our Hope”.
In much the same way as they did with cars, many of our parents in the 1960s wondered if we needed a TV. You didn’t need to have a TV back then but it just looked like a good idea. A little luxury.
But soon afterwards, when Kennedy was shot, and the news ever more often began to break on TV, life without a TV became inconceivable to many.
It was the same with computers. Lots of us got told by real computer geeks in the 1980s, we didn’t need computers – for what we did all we needed were electronic typewriters. But as TVs hooked up with computers to create the informational super highway we have entered a world now where you absolutely have to be hooked up or you’re not alive. There isn’t an option. Everything conspires to sell the product.
The informational super highway looked close to adverse effect free until Edward Snowden revealed there could be risks to all this that we weren’t aware of. And of course if you are not hooked up you might get a bunch of US SEALs breaking down your door one day and killing you because, well if you aren’t hooked up to the superhighway, you must be up to something bad. (Monty Python’s Spanish Inquisition in modern form).
There seems to be no way back. Nothing the individual can do.
Slow medicine
Except as mentioned in Crusoe Report – 1, we have found ways to resist the Fast Foods from Supermarkets that also began to come on stream in the 1960s. They were once a luxury but now are seen as second rate.
In just the same way as for food, cars and televisions, back in the 1960s drugs were not the only answer to health care problems. They were a necessity in some cases like an ambulance is a necessity but in many other cases an option or even a luxury.
Doctors were people you expected would know you and your family and community and would know when to tell a teenager that being lovesick was not an illness or parents that adolescence was not pre-psychosis, or pregnant women that having an occasional glass of wine was probably a lot safer than having most drugs during pregnancy. They were people who had the common sense to rarely have you on several different drugs at the same time.
When effective drugs came on stream for the first time, many of these doctors realized that they were dealing with poisons because they saw side effects they had never seen before – the deafness that came from streptomycin, the limbless babies following thalidomide. These new tools needed to be treated with respect. This was not a world in which statistical benefits on concocted indicators would have appeared on the front page of newspapers.
We have been swept into a world where as opposed to being regarded as poisons that could be tremendously useful if used wisely, drugs are seen as fertilizers – to be sprinkled as widely as possible and begun as early in life as possible – solanezumab from birth?
Why not? If at a time of growing evidence that antidepressants cause profound problems for the children born of women taking them in pregnancy, there can be serious proposals to stamp these drugs with the image of a pregnant woman to overcome the scruples women might have about taking antidepressants during pregnancy, some academic out there can be relied upon to propose solanezumab from birth and newspapers to frontpage it and governments to support it rather than take action against the corporations producing the heavy metals that are likely causing the problem to begin with.
Just as cars and climate change are inextricably linked to oil, Fast Medicine and the changing climate in healthcare are inextricably linked to the controlled trial. Why engage with the changing the world when statistical surgery and data suction can give you figures to die for?
To be continued…
Yes, yes yes…………… oh just the title, hits the nail right on the head……………… Yes yes, let the peasants eat gmos, let the peasants get vaccinated, let the peasants go nuts on happy pills………………….. thankyou your title is great, now I will read, and I bet the text is just as great as the title! x
The whole world is getting intoxicated-poisoned, and nobody seems to care.
Is there anything,invention.method,available to Detoxify The World? This is an emergency!
Chagai Dubrawsky M.D.
“”Doctors were people you expected would know you and your family and community and would know when to tell a teenager that being lovesick was not an illness or parents that adolescence was not pre-psychosis, or pregnant women that having an occasional glass of wine was probably a lot safer than having most drugs during pregnancy. They were people who had the common sense to rarely have you on several different drugs at the same time.”””””””” so so true……….. Yes, your title and your text are both brilliant! Well done…….. wish I could have written this, but I aint well enough, so glad you wrote it!”
My son has had his life and his health destroyed by the health care given to him to try and improve his condition. I can honestly say that 16 months after his diagnosis of a rare neurological condition he has ended up worse off than if he had never been diagnosed.
It’s a fine line because obviously if you are suffering and living with a condition that severely affects your life then you want to take all the help you can get but at what price ?
My son was put on SSRI’S because the action they have on the brain helped stop him from collapsing due to his condition. The price he paid for this was too high. He had to stop the medication because of the severe side effects. So now not only is he collapsing multiple times a day, he also has to live with the damage these drugs did to him physically and mentally.
The thing is that until things started going badly wrong we had no clue that the SSRIs he was taking were capable of doing this sort of damage.
I look back now and think that the biggest mistake he made was putting himself at the mercy of “help”.
Hi Amy – I am sorry to hear your story.
My son also had his life ruined by SSRIs.
Aged 16 [1995] he was diagnosed as having clinical depression and prescribed seroxat. He took this unmonitored for 5 years. It made him manic and then he developed an ‘atypical psychosis’. We were living in Spain by this time and he was hospitalised there. The consultant told me he was ‘delirious’ and stopped seroxat overnight. Delirium [drug toxicity] can cause permanent brain damage or even death. We were also told there were signs of autism. In hospital he was given antipsychotics which [we now know] induced Tourettism.
We came home to Scotland ad he went straight to a local psychiatric unit, where they did not take on board the delirium or autism symptoms. Over the years he has been given 13 different antipsychotics and labelled as having treatment-resistant schizophrenia.
When he was 26 we had him privately assessed and he was diagnosed with Asperger syndrome. Some clinicians then queried the schizophrenia label, but with a constant stream of locums, no one took action.
Our son was also diagnosed as having bipolar, schizo-affective disorder and schizophreniform. Take your pick!
Misdiagnosis in adults with Asperger syndrome is now well documented. My son is one of thousands trapped in the system, with antipsychotic-induced symptoms which doctors want to treat with even more drugs.
He is now on two antipsychotics and has been on diazepam for 2 and 1/2 years.
But at least he is still alive for the moment – unlike others on the autism spectrum who have lost their lives because psychiatrists don’t have the required knowledge and understanding of metabolism problems existing in those with autism spectrum disorders.
Before being prescribed seroxat, his school head told us he was ‘university material’. He is now 36 years old and lives in an independent flat adjoining a care home. He is incapable of reading a newspaper, far less go to university.
As someone who lives without a car, without television and avoids all fast foods I know that change can be achieved but have no hope that it will be. (No, I don’t wear homespun clothes and rubber tyre shoes but would if so inclined, they’re just so unchic).
Currently, and I hope soon to be able to leave, I live near an area that is so polluted the details, such as have been published by an unwilling government, defy belief.
National limits Toxin Local limits
12 arsenic 813
646 chromium 18,750
63 copper 20,625
140 lead 1,473
10 molybdenum 2,063
1 Thallium 29
200 zinc 123,750
There are no safe limits for arsenic, common in coal mining areas. As you can imagine, life expectancy is lower than average and rates of cancer, colon diseases and cardiopulmonary disorders are off the charts. We haven’t even touched on the mutagens present. All can be traced back to the described perceived need for machinery that needs power, fast foods (believe it or not), and “labour saving” devices. The Luddites lost the first time around and nothing has or will, I fear, change.
….judgement…
Today at 5:54 PM
Dear AllTrials friend
The judgement in the judicial review brought by Richmond Pharmacology against the HRA has been published. The judge has found that the HRA has a clear legal right to monitor researchers’ compliance with legal and ethical obligations to register clinical trials. The Judge said that the HRA has a remit to impose sanctions on researchers who breach those obligations. But he also found that the HRA’s website is currently too ambiguous and confusing about what those obligations are to be able to lawfully do this. The Judge asked the HRA “as a responsible public body to cast a self-critical eye over the whole of its website material in this domain.”
The Judge also said he is grateful to us for our clear and strong submission. We are very pleased that we intervened. Our submission and the HRA’s evidence helped narrow the case down from Richmond’s initial broad arguments to a discussion on the day of the hearing about the meaning of some words on a page on the HRA’s website. It has taken 5 months of legal argument and cost hundreds of thousands of pounds to get to today’s judgment but this is not the end of the matter. Next, both sides will tell the Judge what relief they are seeking (ie what they want him to declare or to rule), the Judge will review their arguments and will issue an order, probably very soon. As soon as we hear it we’ll let you know.
The HRA now has a clear mandate to continue its work promoting trial registration and reporting. The judgment is a very clear and comprehensive setting out of the issues and of the legal and ethical obligations on researchers, it’s a good read, find it and key points from it here.
Thank you again for your support during this.
Best wishes
Síle
Goodness – reading The Crusoe Reports have transported me back to a hugely different era – my childhood in a small Scottish village.
I was born in the front room with a local midwife in attendance. Food was bought daily from local shops [no working mothers] who sold locally sourced items. Vegetables were seasonal. Local farmers didn’t go past turnip, carrot, onion, cabbage and potatoes. I was 19 before I saw or heard of sweetcorn. Very different today when I overheard in the supermarket,
“Aw Jessie! They’ve nae pawpaws!”
Fresh milk was delivered daily, poured into metal cans left out at night. And there was always an inch of cream at the top. I didn’t much like it though, when it was still warm from the cows’ udders.
Butchers bought their meat at the local cattle market, and huge carcasses hung in the front shop attracting bluebottles. Rabbit and chicken were delicacies saved for birthdays and Christmas. Freezers hadn’t been invented – nor had fridges come to think of it. Fresh food was kept in the larder, which was supposed to be the coldest room in the house, but since there was no central heating either, other rooms were equally cold.
And doctors? I can’t remember ever going to a surgery. [My first visit was when I was in my twenties, and I wanted the ”The Pill”, but that’s another story.] Warm whisky and honey did for colds, cold whisky soaked in cotton wool for toothache, hot bread poultices for boils, bowls of steaming water and Vick, for chesty ailments. Even measles and mumps were dealt with by mothers exchanging advice ‘doon the street’. The biggest medical crisis to hit us was when my brother got scarlet fever and had to be hospitalised in isolation for six weeks.
Funny how scarlet fever has all but disappeared without help from a vaccine?
They keep telling me that people are living longer, but the generation who brought me up, lived well into their late eighties or nineties. [No Alzheimers] I wonder if I will make it to that age?
Seems to me, life was simpler and healthier, before we went global.
Thank you David for prompting a nostalgic journey down memory lane!
Looking forward to the next installment.
I’d been trying to think of what kept bothering me about this piece, which in general is SO right on the money! Medicine as a commodity totally shaped by the market? Yep. A market dominated by corporations so powerful that, far from giving the people what they want, like the “free market” does in storybooks, they reshape us to want what they give us. A commodified food supply that’s a weird caricature of the commodified health system and makes us even sicker. And a social structure that locks most of us in so tight that we can’t live any other way. That all makes total sense.
The part that bothers me — the part that doesn’t make sense — is the romantic view of the past, when we were healthy and happy and naturally wise. I started scribbling down the diseases Janette mentioned. Where did they come from, and where did they go? Scarlet fever, it turned out, comes from the same bacterium as strep throat. So does rheumatic fever.
My grandmother knew what it was like to treat all three by “sweating ’em out” with whiskey, flannel blankets and prayer. You lost a lot of kids that way, and she never forgot being in the first generation of moms to give her kid penicillin in the late thirties. There were still some adults when I was small with “bad hearts” and fragile health from having rheumatic fever as young’uns. Me? I wouldn’t know rheumatic fever if I fell over it. Thank god.
While penicillin was a big part of driving those bacteria off the scene, decent housing with adequate ventilation and large sturdy children who’d had plenty to eat did a lot more to stop the untrammeled epidemics. As for yellow fever, which devastated parts of the South right into the thirties, getting rid of the mosquitoes that carried the virus was the best weapon. Add clean running water, getting the lice out of our hair and the rats out of our walls, and we were well on our way to getting rid of typhus and typhoid fever too — although antibiotics and vaccines helped finish ’em off. And the first big downsizing of the great insane asylums came after the war with the end of problems like “pellagra” that were diseases of malnutrition, pure and simple. I’m sure if they’d persisted we’d have treated them with Thorazine, but it wouldn’t have done much good.
Well hell, it’s hardly an original observation, is it? A lot of our actual grandmothers and great-grandmothers lived short unhealthy lives. Some of their misery was brought by Nature and cured by Science, but a lot more of it was socially constructed, a function of who was in power. Just like the mess we’re in today. And it was “cured” by the social upheavals that brought us living wages, social security, free public schools and the wild anarchist concept of the eight-hour day. All things slipping from our grasp today that we’ll need a few more upheavals to win back.
The “slow food” movement has some great and absolutely necessary ideas vital for our survival. That’s why it’s so sad, to me, to see it so easily commodified as a lifestyle each of us can “choose” — if we’ve got enough money, flexible hours and live in the right neighborhood where fresh produce is easy to get. I hate to see Simple, Locally Grown Food morph into just one more weird new badge of class privilege — like Walkable Neighborhoods, Small Schools and Mindfulness (ouch, sorry). But that’s all we’ll get, if we just try to secede, one by one, from this cussed modern life and return to a past that was never really there. My actual grandmother taught me a lot about healthy eating that my doctor can’t. But she also told me about eating lard biscuits smeared with lard sometimes, just to keep going, and feeling lucky to make it to sixth grade. Gotta remember both.
Another excellent post.
Personally, I am appalled at what passes for modern ‘health care’. In my experience of GP’s today, they can’t seem to get you out of the surgery fast enough. Patients are treated like a production line. There is no continuity of care, there is no ‘care’ full stop. It’s become an industry. It’s worse in psychiatry, mental illness patients are treated like fodder and road kill, because there’s always going to be another generation in distress from the human condition, another demographic of sensitive souls to use will promptly come along straight after their done drugging this one to death…
Thanks for speaking out Dr Crusoe whoever you are.. we need more like you.
…..p.s…….
Today at 5:42 AM
Dear AllTrials friend
We’re excited to announce that 50 patient groups, consumer organisations and medical societies have come together to launch AllTrials USA today! These groups have said:
“We are calling on everyone in our sector to join us in supporting the AllTrials campaign. Hundreds of thousands of patients have taken part in clinical trials which have never reported results. For every day that passes, more information is at risk of being lost forever. We have to make every clinical trial count. Join us today.”
Patient activist AnnaMarie Ciccarella said: “We provided our bodies, our tissue samples, our data. I’ve heard the same sentiment expressed many times from patients in clinical trials, ‘This may not help me, but it may help another person.’ It’s time to honor that sentiment.”
Read more inspiring words from the patients, researchers and groups launching the US campaign today at AllTrials.net.
We got an incredible response when we asked if any of you were able to volunteer some time in July to help with this, thank you! Because so many of you hit the phones and reached out to hundreds of organisations across the US, the campaign is able to hit the ground running. Look out for media coverage and editorials today and throughout this week, announcements of new organisations adding their support and calls for action in the US at #AllTrials on Twitter and Facebook.
Meet the team behind AllTrials USA here, get in touch and add your support!
Best wishes
James
P.S. If you haven’t already, do read this week’s Economist for great coverage of the campaign ahead of the US launch, and check out the Financial Times and The Wall Street Journal for coverage of our announcement last week that investors worth over €3.5 trillion in assets are supporting AllTrials, or read more about it on our site.
I am, to my astonishment, enjoying a lovely tour of recapturing the simple, basic healthy lifestyle–; the reality check that has followed my early, forced retirement from psychiatric nursing (special focus on children, adolescents and young adults)– Necessity is the mother of re-invention, too?
I have been designated a full-time live in Nanny and homemaker for my grandkids– chiefly. My 40 year nursing career was tossed in the hopper when I became a *blood traitor* to Harvard’s Dark Lords of child psychiatry–. Blacklisted, defamed and shunned in Boston– Nearly a year in this new role, and I find myself celebrating the spoils of being an outspoken critic of psychotropic drugging and psychiatric abuse of *youth*. Forced to scale down, hunker down and actually work my own garden, return to essential oils for health and beauty,– time aplenty tp develop my artistic nature– I am reaping rewards rather than lamenting the loss of financial benefits and career status. Even my mood has become cheerful– at baseline. Fully engaged with my grand son and grand daughter : making *potions* from our herb garden, harvesting fresh vegetables, walking and biking; designing robes and wands for our school of wizardry and witchcraft-(I have read all seven books in the Harry Potter series–; have seen all 8 films– AND can cast spells, charms and enchantments with the best of ’em)
There is a thrilling adventure awaiting those who whistle blow loud enough or completely ruffle the feathers of their mental health professional colleagues–. At the very least, I am steadily increasing my bone density precisely when I would be high risk for osteoporosis.
Crusoe, rescued and rejuvenated 🙂
A Canadian interpretation of journals, alltrials, infamous Study 329, books and medical gadflies….
http://www.madinamerica.com/2015/07/should-physicians-read-journals-given-current-standards-maybe-not/
http://www.psychologysalon.com/2015/01/science-in-court-study-329-paxil-and.html
including “the worm of shame”…
….roundup….
Today at 4:55 PM
Dear AllTrials friend
Such a lot has happened in the last few weeks in the campaign we have had trouble keeping you all up to date with everything. So here’s a quick round up before the weekend.
Last Wednesday we announced that investment firms with a combined €3.8 trillion of assets support the AllTrials campaign and will be writing to pharmaceutical companies to tell them so. As Helena Vines Fiestas from BNP Paribas Investment Partners, who has been working alongside AllTrials on this, said, it’s not only patients and doctors who are misled when trial results are kept hidden, pharma company investors are too. Read the Economist leader article (£) for more on this.
This week, 50 patient groups, medical societies, and consumer groups came together to launch AllTrials in the US. Read inspiring words from these groups on why they joined and are calling on others to do the same, and see the Financial Times (£) editorial marking the launch.
Thank you to those of you who are already spreading the word about the US campaign! Here are just a few of the fantastic blogs we’ve seen, from the American Academy of Family Physicians, the National Physicians Alliance, PLOS, and GSK.
And yesterday in the judicial review Richmond Pharmacology brought against the HRA, the Judge published his order. He declared that some material on the HRA’s website is “ambiguous and potentially misleading” and therefore the HRA has acted unlawfully. He recommended the HRA reviews its website. We are glad that we intervened on behalf of AllTrials as it helped narrow the case from the initial very broad arguments Richmond made. So after 5 months of intense legal argument, in a process costing hundreds of thousands of pounds, and after putting clinical trial transparency in peril, Richmond has ended up with an order which says that the HRA’s website is unclear. Ben Goldacre wrote an excellent column in today’s Times newspaper on the judicial review, “Britain will be the loser if we dumb down clinical trials”
Here is some more great content which we would love you to read and share too:
• The story of AllTrials (a short history of the campaign by Trevor Butterworth, Sense About Science USA, using words from Síle Lane and Ben Goldacre)
• This clinical trials simulator from the data team at the Economist (run trials, hide results and see what that does to a drug’s effectiveness!)
Best wishes
James
One of the just a few responses, as highlighted…
http://gskmorethanmedicine.com/blog/2015/7/29/not-some-trials-alltrials
http://www.alltrials.net/news/the-story-of-the-campaign-thats-changing-the-world/
Ben, Sile, Ben, Sile, Ben, Sile, GSK, Ben, Sile…………….
My Trial Buddy @MyTrialBuddy
..in a single second your whole life could change”
Gillian Nelis ✔ @gnelis
Great piece about #AllTrials by @susmitchellSBP in today’s @sundaybusiness, featuring Sile Lane from @senseaboutsci pic.twitter.com/36Iulgx9aP
Twitter
1. 6m
Sense About Science @senseaboutsci
Irish friends, there’s a big piece on #AllTrials & investor support in Sunday Business Post today @sundaybusiness pic.twitter.com/bBydjxVKgv
Caption:
Ben Goldacre: the most famous doctor in Britain…
Follow that twitter……………
I’ve never consumed an SSRI but I was prescribed ‘prothiaden’ (tricyclic). I suffered more from melancholy, and what cured this (- permanently, so far) was Buddhist Meditation.
I would recommend this meditation to anyone – it’s very cheap, it’s without health defects, and you don’t have to convert to do it.
At the time, It seemed to me that if the RCTs were properly conducted, properly analyzed, and properly reported that everything would be fine. On the one hand, what is the alternative to evidence-based medicine?