Dance With Python: Healthcare In Peril
This is the last in what was once the BarMittzva Romba series aimed at Bar(ack) & Mitt. These have now been renamed as a series of Dances – Dancing as fast as we can, Dance to the Music of Time, Dancing In The Dark, Dance of the Sugar Plum Fairies, & Shadow Dance. Between them they reprise the plot of Pharmageddon.
In Malaysia, Dancing with Pythons is an art form. Women dance to music with a large python draped over and around them. Just like walking on burning coals, it can be done if you know what you’re doing. In this case the art lies in ensuring you do not let the python’s tail attach itself to anything. If the tail can grip something, the python will squeeze the woman to death.
Close to 20% of US GDP now goes on healthcare, up from estimates of between 1-4% in the 1950s. In the 1960s, the consumption of healthcare in the US, which was the highest in the world, made the country the healthiest and wealthiest on earth. Now US life expectancy has fallen below that of Cuba. Has the pharmaceutical python gripped on to something and is it squeezing the life out of us – literally?
Money spent that makes a population more economically productive by getting people off sick leave and back to work is an investment. Money spent that gives people illnesses they were not complaining off, puts them on treatments that make them less economically competent, treatments that cause more death and disability than they alleviate, comes close to being a tax on us and our jobs but paid to corporations rather than government.
With many treatments, we are doing the equivalent of ensuring as many people take prescription alcohol as possible, and take it indefinitely, and we are reaping the economic consequences that would likely ensue from such a course of action (Shadow Dance).
Alienation
If the economics don’t force a rethink, there is a cost in alienation besides the economic cost that may. The marketing of drugs is changing the fabric of what it means to be human. There are endless egregious examples, such as the rediagnosis of the “terrible twos” as bipolar disorder.
But a key area, because it shows that it is possible to fight back, has been the struggles over female sexual dysfunction. Where once women fell in love, scientists now try to tease apart the components of female desire so that it can be turned into a commodity. Viagra it appears has the same effects on women as men, but the women are not as motivated by these effects as men. The answer apparently is to coat Viagra with testosterone to mimic estrous when females are more likely to respond to the effects of Viagra. If marketed, any benefits that may accrue to some women are unlikely to outweigh the alienation inflicted on all by a marketing that will reduce love to physiology pure and simple. The movie Orgasm Inc shows how women have been successfully fighting back against this.
Doctors are also alienated. Where medicine was once a vocation, for a growing number it has become an industrialized enterprise that makes them increasingly likely to be sacked if they try to practice good medical care. But it is difficult to envisage doctors rising up to put things right for this reason. They are more likely to act if they realize that they are being replaced by cheaper prescribers – provided they realize in time.
But unlike climate change or mass starvation in Africa, where the complexity of the problems induce paralysis in most of us, these problems are ones that we can solve. There are several key changes any of which would radically transform the picture.
Access to the data
The leading problem is that the market is not free. Unless the data on treatments can be accessed and are as comprehensive as possible, no other part of the market can be free. Given that science by definition is based on accessible data, a great deal of what passes for evidence based medicine at present as promoted by pharmaceutical companies can perhaps be described as fraudulent. However it is described, it is costing us money in return for which we are getting on balance more disability and premature death than benefit.
Our current failure to ensure access to the data puts current Western science on a par with the science of the Lysenko era in the Soviet Union where ideology dictated what the science said. Our healthcare has become as totalitarian as the Soviet state once was and as vacuous as the patent medicine era of the nineteenth century once was (Dance to the Music of Time).
Patents not fit for purpose
The problems that stem from data sequestration are aggravated by product patents. Companies would be well rewarded by product patents even were the patent office stringent in their determinations of utility and originality. Having a lax patent system combined with lack of access to the data is the worst of all systems. It is a system that could not be better designed for the purpose of transforming pharmaceutical companies into the equivalent of tobacco companies (Dancing in the Dark).
Why have things worked out this way?
It is possible that as a matter of strategic national interest the USA decided to try to attract the pharmaceutical industry to its shores, by relaxing the application of patent requirements so that companies could print money in return for drugs that were no more useful than bottled water. Whether by deliberate strategy or not, this is what has happened. The price Americans are paying is very high. Everyone else is at growing risk.
Randomized controlled fetishes
Any of the sticking plasters we apply to attempt to stop what is now a hemorrhage of money only aggravate the problem. The latest wheeze is comparative effectiveness research. This rests on misguided notions of what randomized controlled trials can do and fails to understand healthcare. It assumes that people have a greater desire to get from Washington to Seattle 15 minutes faster than to get there alive. Applied to an airline it is easy to see that being a slightly quicker but less safe airline is not a formula that will work. But somehow getting to the healthcare equivalent of Seattle a few minutes earlier is supposed to solve all our problems.
Effectiveness was originally a component of safety. One of the key conceptual problems at the heart of our current difficulties is the failure to realize that the market will work if it is a comparative safety rather than a comparative effectiveness market. This is not a precautionary principle argument. It encourages innovation and will reward it out of the wealth created by making people healthier – we will be wealthier if we are healthier.
But it does require a shift in perspective. We will need for example to think about guidelines for people rather than guidelines for diseases. Doctors are increasingly killing people very effectively by faultlessly following an ever increasing number of disease guidelines, the results of which are to exponentially multiply possible interactions between treatments and to set up a series of prescribing cascades. Extirpating diseases is not the goal; keeping people safe is.
Keeping doctors safe
Congress likely thought it was creating a comparative safety market when it made new medicines available on prescription only in 1962. It did create one – for doctors. They have had a guaranteed income as a result. It is more difficult than ever to take malpractice actions against doctors even as evidence accumulates that people are likely to be injured unnecessarily for a decade or more by new treatment induced problems owing to the inability of doctors to pick up these problems. We need to find a way to re-educate doctors, or reward them for keeping people safe, or else we need to consider abolishing prescription-only status for many medicines.
The market Congress envisaged in 1962 is at odds with the realities of health today. Congress viewed citizens as dupes, in need of protection. The advent of the internet has meant that many quite average citizens know more about their treatments than their doctors do.
RxISK.org
We need new collaborative models of care that recognize this and harness the drive and energy of patients to making medicines safer. It is this “Yes we can” idea that has driven the development of RxISK.org.
I first heard about Dancing with Pythons from David Weatherall, then the Professor of Medicine in Oxford. He had been struck by it. But mistakes can happen and he later learnt that the woman he had seen dancing made one in a subsequent performance and died.
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I have been researching all these pharmaceutical companies where my daughter has been put on their drugs by the psychiatrists and where the drugs have made her worse, not better.
In the case of tobacco/alcohol manufacturers they are made to pay by taxes – what of these companies. They all like to portray themselves as caring and are keen to show what they do to support community projects. As a mother I intend to approach each and every one of them to ask for their donation as not one appears to be helping any of the “victims of the pharmaceutical industry” like my daughter. I believe that if someone suffers so much and is classed as “treatment resistant” then they should be helped to come off the drugs especially when there is doubt about that person’s diagnosis which is something I will also be challenging in court very soon. It would be nothing for them to donate something to provide the facilities needed for someone to go into to safely come off the drugs very slowly and gradually. There are many professionals willing to speak out now about the dangers of these drugs but what can be done to stop the suffering of so many people like my daughter before it is too late. In some cases it would appear the drugs are not working at all or benefitting the patient and there is absolutely nothing over here to help that person. I believe the pharmaceutical companies should all contribute a bit towards helping people like my daughter when their drugs simply do not help and when someone complains of terrible side effects or there is any doubt about their diagnosis.
I doubt any of them will contribute a penny but I am definitely going to write to them all to see their response seeing as they like to portray themselves as being so very caring.
‘The advent of the internet has meant that many average citizens know more about their treatments than their doctors do.’
That is because we know what these drug are doing/have done, to us and so, even as, average citizens, we make sure we do our research and find out why we feel like we do and then, naturally, we are pretty horrified that it is not just us, but thousands upon thousands who are feeling the same??
I actually did not realise that this psychiatrist sitting in my sitting room, deciding whether to give me Seroxat or not, did not want to know about my successes. The tick box he was filling in, like an application form for a job, did not list my successes during the previous fifty years. It centred on the negatives in my life at that particular time, in that particular sitting room.
My intelligence quota, which I might add, was far greater than his, although, I did not appreciate that at the time, and his negative list of negatives did nothing to purport a successful international career, a loving mother and partner, a mental strength which was dented by a situational crisis, which, naturally resolved itself.
He could not see beyond his pill to solve a crisis; my airline pilot boyfriend was in the newspapers. This is life, this is a problem, this is a crisis, pills do not make this go away.
So, for two years I lose my empathy, I lose my emotions, I lose myself and then to top it all, to coin a phrase, I nearly end up a statistic because He really did not give a damn whether I lived or died. I cared less, when on Seroxat, and he couldn’t care less.
In the current edition of the Journal of Medical Ethics, there is a fascinating article related to the need for prescriptions for many drugs.
Three arguments against prescription requirements
Jessica Flanigan
Downloaded from jme.bmj.com on September 25, 2012
The author states: “This discussion raises the following puzzle. If patients are entitled to make refusal decisions without coercive or deceptive interference, then why are they not similarly entitled to make treatment decisions more generally, including the decision to use prescription drugs?”
The discussion itself is very interesting but even more so are the comments on it and the attitudes they represent.
Thanks for a tremendous exposure of Healthcare, Inc.! I just wanted to add a few comments on the sagging American life expectancy.
It’s kind of a two-headed problem: health-care famine at the bottom, health-care overdose in the middle and at the top. The famine is not only among the 50 million uninsured, but another 50 million with Medicaid coverage – the public plan for the destitute and disabled – whom many physicians especially specialists flat-out refuse to serve. Dr. David Ansell, author of a very good book about Cook County Hospital, lays it out very well here:
http://www.countythebook.com/blog
So while people with private insurance are practically mugged in the street by physicians and dragged in for a screening colonoscopy as soon as they turn fifty, down at Cook County Hospital there are four thousand people on the waiting list for diagnostic colonoscopies. That is, people who have real symptoms which may be colon cancer. Overtreatment down at Rush Medical Center … undertreatment at CCH, which operates in a different world just three blocks away.
One thing about Medicaid, however: it’s truly lousy coverage for physician visits, but pretty darn good for pharmaceuticals. So while for black women with breast cancer in Chicago the odds of dying of their disease are double that of whites, they are probably not far behind in prescriptions for Nexium or Lipitor. Or Risperdal … which stimulates prolactin, and so might actually play a role in breast cancer. So I guess we’re back to square one: Healthcare, Inc.
Not a million miles from what is being said……..when I, as a patient, send in my Formal Complaint to both surgery and hospital, because of the nature of my ‘problem’ with their appalling diagnosis, both gp and psychiatrist are hot on the telephone to:
1. National Health Highland for advice and reassurance, he did no wrong
2. Dental and Medical Union of Scotland for advice and reassurance, she did no wrong
At this point, with two letters telling me what they did, I feel severely attacked, more so, than when I had been attacked with verbal assault, during the horrific weeks off Seroxat leading to………
So, these two ‘individuals’, lean on these ‘outfits’ who, without hesitation, give all belief to them. Did these two Unions and Authorities bother to ask me, who the complaint was about, about this situation?
They did not. They accepted the ‘little squeals that a patient had dared question their diagnosis and authority’ and gave all belief to both doctors, and, not the patient, instantly, and without any thought, whatsoever, to the dilemma the patient was in.
The whole patients’ complaint procedure is rotten to the core, as they hide behind their unions, and the patient, belittled and battling now, not only faces the ‘blank and expressionless’ faces, of these ‘drug specialists’, but is left out of the equation, of what the complaint was about.
Layer upon layer of denial.
Where is my Union, my Public Health authority? Where do I go, in this convoluted, mess of a system, that leaves me, bereft, wading through the UK National Health Service to find anybody who is interested.
Well, basically, they aren’t, are they??
Just when you thought it was safe to go back in the water……
Ten of the world’s largest drug companies have said they will join forces to kick start research into developing new drugs.
The firms have set up a non-profit organisation called TransCelerate Biopharma Inc, which they say will focus on the quality of clinical studies and bring new medicines through more quickly. Abbott Laboratories Inc, AstraZeneca Plc, Boehringer Ingelheim, Bristol-Myers Squibb Co, Eli Lilly and Co, GlaxoSmithKline Plc, Johnson & Johnson, Pfizer Inc, Roche Holding AG’s Genentech and Sanofi SA have launched TransCelerate BioPharma Inc, headquartered in Philadelphia, the companies said on Wednesday.
Each company will contribute financial and other resources to meet specific objectives and established guidelines for sharing information and expertise.TransCelerate Chief Executive Dr Garry Neil :
“There are a number of problems we want to solve. Some are related to cost, but we’re just as concerned about other factors — the quality and the time it takes to enroll patients and complete clinical studies. As an industry, we’re not able to address the unmet needs as fast as stakeholders want and patients want,” he said. “The questions we’re asking are more and more complicated. We’re going into more difficult diseases — Alzheimer’s, congestive heart failure, advanced cancer, diabetes, obesity — and as we try to study these diseases, we need a more robust infrastructure.”
The questions they see to be asking are whether they can come up with new diseases needing new drugs.
The ‘unmet needs’, he says. We did not have any ‘needs’ that are unmet, or, we thought we didn’t until ‘happy pills’ came along. Given a few hours with a competent counsellor, we would all have been better off.
All we want to do is to persuade them not to develop more drugs, with more side effects, with shorter and shorter clinical trials, the results of which, are not shared with us.
I was a guinea pig, with a drug, which failed spectacularly.
We are going into ‘difficult diseases’ is commendable, but it is not commendable enough when the last few years produced drugs which made people into murderers and suiciders.
We ‘need a more robust infrastructure’; we sure do, we need a safety net, which has not been provided, and the sooner, these academically-minded chief executives get their head around that, the better.