I was brought up to be very considers about other people's views and openness. At a party you never discuss religion or politics and you always take the hostess a gift. unusually I am going to type a post that is more controversial than I would normally. What has prompted this is my pet hate assumption. Worse still assumption that points the finger of blame to people who actually are trying to help. How can I be so certain that my viewpoint is correct it is because it is not based on assumption it is based on experience over seven years. I think that means I have a valid point. Some of you may already know that I have been a Parkinson's disease ambassador and I spent many years working on the inside track i.e. within the pharmaceutical world. During this time I spoke to and engaged with over 12,000 employees managers CEOs and owners. My remit was very clear to provide insight intelligence and representation for patients. I was not a marketing pawn and I operated at the highest level. What I know is this :
1. Pharmaceuticals invest heavily in research and development to progress options and solutions for us patience
2. They do not withhold information. However they are tightly controlled and restricted by external bodies.
3. Their wish is only to operate in a culture of transparency
4. They are trying to shake off the reputation and misinformation that so many have about their industry. But they are unable to advertise unable to have marketing campaigns and unable to promote themselves in many ways.
So before you point the finger and accuse please make sure that you know for yourself exactly what you are talking about.
I have met dozens no hundreds of dedicated passionate intelligent fearless people desperate so desperate to find solutions for us in the best way they know how. I won't have their commitments hard work and effort's trashed through ignorance.
You may think that I have been dancing with the devil but better the devil you know.
I agree with you but like every other industry/profession. There are the greedy opportunist out there that feed the discontented. But the majority of those devoted to discover a cure are worthy of our respect and work hard for their rewards.
I am guessing that you do not live in the US. I am quite sure that most scientists and researchers are as you describe them. However the pharmaceutical companies in the US make huge profits. It is not the scientists who take home these huge profits, but the billionaires who own and run the pharmaceutical companies. Perhaps they do not advertise where you live, but here we are inundated with commercials for drugs. I sincerely hope this country will follow you r example.
Cbauer is correct. It is an obscene and shameful situation here in the states. Pharm. corporations spend millions on TV & print ads urging patients to "talk to your doctor" to use this or that new drug ("patient driven prescribing") - and then the drugs cost SO much for SO long - with insurance companies also playing in the game. Our system is embarrassing for a wealthy & supposedly "civilized" country.
The U.S. is indeed a different ballgame, and after reading Colleen's endorsement of the English system I feel thoroughly embarrassed about our own. I must agree with Colleen though that whatever the country, it's important not to lump researchers in with investors. In the U.S., the quarterly return dictates way too much in medicine, and medical researchers and practitioners despair as strongly as the patients. p.s. Move over, folks -- I'm moving to the U.K. Midsomer, to be specific!
From another USA citizen, I have seen the drug companies take an existing reasonably priced drug, repackaged into a fancy injectible system that comes complete wit a nurse case manager. 3 month supply was $13,000 dollars. Lucky I had insurance but the insurance company changed the approval system for the drug after my case.
It is not 'ignorance' to keep in mind the fact that the Pharmaceutical industry is just that - an industry. As such, it is not 'ignorance' to keep in mind that their primary objective is not one of benevolence, but of profit to themselves and their shareholders. Similarly, it is not 'ignorance' to keep in mind that developing a 'drug' that must be taken throughout the life of the patient - preferably one obtainable only from them for whatever lofty price the market will bear (rather than an outright cure) - is in line with their primary objectives, their holy grail.
For this reason, late-breaking alternative therapies (alternative to pharmaceutical analogs) should always remain on the radar of those with an aversion to 'ignorance'.
Wrong, your point was clear and I caught it. Beginning your 'point' by detailing an upbringing that included consideration of others and their views, you conclude (based on 7 years of experience?!?) that the pharmaceutical industry is comprised entirely of "people who work so hard on our behalf", "hundreds of dedicated passionate intelligent fearless people desperate so desperate to find solutions for us", people who "deserve more respect".
By referring to it as "ignorance", you seek to dissuade the more skeptical views that those with a different base of experience may hold (despite a similar amount of exposure to what you choose to view as pharma's selfless 'benevolence'). You declare you "won't have their commitments hard work and effort's trashed through ignorance" (despite being brought up to be considerate of the views of others?).
The only point I missed was that which I subsequently included in my reply - the critical dose of reality missing in your post.
For pity's sakes, Meta, she described an entirely different system than the one we are familiar with in the U.S.! This is a very smart lady and knows firsthand the feelings and attitudes of people with whom she has worked. And BTW, if something is important enough to say, usually it is possible to say it with sensitivity.
I have logged back in to reply to you. What exactly did you hope to achieve with my character bashing? Your ill mannered and uncalled for dissection of my post. You are ignorance personified. This site and its contributors welcomes views and opinions, they can be polar opposite but done respectfully and sensitively. That is something I try to uphold. I won't share the same page as you. I have left in utter disgust.
Despite the implication that those holding or voicing a more skeptical view of the pharmaceutical industry than your own did so out of "ignorance", my first reply was simply to fill in a few of the critical pieces missing from your promo on their behalf.
My second reply was simply to correct your erroneous claim that I had missed your point. Quoting you (the "dissection"?) was to further illustrate the 'point' you thought I'd missed.
It’s truly touching to find someone who believes selfless benevolence to be the driving force behind the pharmaceutical industry… especially if it’s a sincere belief. On the other hand, however, it is also frightening (if sincere) to encounter one so dangerously naive.
The simple fact of the matter is, we will NEVER see an actual cure arise from the 'benevolence' of all those "people who work so hard on our behalf" - it’s not in their corporate DNA. The absolute best you can hope for from all that ‘benevolence' is that, as they make their billions from our daily/hourly doses of their latest miracle drug, we may find some momentary relief from a couple of our symptoms. Our greatest hope continues to lie in alternative therapies (like regenerative medicine and stem cell technologies).
Now, try to remember what you were taught as a child and stop referring to those with different, more measured views as ignorant.
You continue your personal attack, and your view point is filled with uneccessary digs and sarcasm. I won't be intimated or bullied by you. I have my beliefs you have yours. Full stop. Your opinion of me is irrelevant or should be. I have reported your behaviour as I wholeheartedly believe it goes against the spirit of the site. You can think what you like of that. I am deeply saddened by your attitude, after all we face the same struggles.
"The simple fact of the matter is, we will NEVER see an actual cure arise from the 'benevolence' of all those "people who work so hard on our behalf" - it’s not in their corporate DNA. The absolute best you can hope for from all that ‘benevolence' is that, as they make their billions from our daily/hourly doses of their latest miracle drug, we may find some momentary relief from a couple of our symptoms. Our greatest hope continues to lie in alternative therapies (like regenerative medicine and stem cell technologies). "
This is the most dangerously naive unsupported statement i have ever heard.
When did god (if you believe in god as for me i don't) grant you the ability to see the future.
You are making statements worst than John Pepper and i think i could not have insulted you more than that.
This is my personal view and is based on my experience. You have yours and I respect that. Feeling the need to insult me is not nice. Why can't people simply say, I don't agree, I think you are wrong or my experience is different?
'abby1933', when you show me a single 'cure' ever produced and delivered by the pharmaceutical industry, I'll show you a platoon of flying pigs. They don't exist to put themselves out of business (and, not to worry, the critique of a dolt serves as a compliment to those of sounder mind).
MC sometimes your posts feel harsh. But they are not necessarily inaccurate or untrue. I believe you have a lot to offer the community. This is a public community--when anyone posts here they are open to any all replies -- JP's included. In this manner of exposure --caveat emptor.
vidently American Medicine doesn’t cure anything except … tuberculosis, pneumonia, bacterial meningitis, gonorrhea, any bacterial illness you care to name. American medicine routinely cures previously deadly conditions like appendicitis, ectopic pregnancies and obstetric hemorrhage. Better yet, it can completely prevent many viral and bacterial scourges through vaccination. It’s not a coincidence that American lifespan has increased from 48 years to 77.7 years in slightly more than a century. Much of what routinely killed Americans is now routinely cured.
In fact, cure is so routine that these illnesses rarely enter American consciousness. No one worries about dying from tertiary syphilis, diphtheria or rheumatic heart disease. Those diseases are routinely prevented or cured in their early stages.
And “disease management” is hardly a deficiency, either. Some diseases cannot yet be cured. Until the day that a cure is discovered, we manage those diseases. Juvenile (type I) diabetes was uniformly fatal until the discovery of insulin. Insulin doesn’t cure diabetics; it merely allows them to live an addition 50 years or more. Instead of dying in childhood, type I diabetics routinely live to have and enjoy grandchildren.
I have a type of leukemia that until recently presented a death sentence within 18 months on average.
Dr. Marc Druker, one of the impassioned researchers and practitioners Colleen referred to, created a "miracle drug" that has enabled those of us with chronic myeloid leukemia to live normal (and long) lives. He goes above and beyond to get this drug to people who need it and to treat them.
WHAT?!? Murmers from the great beyond? Didn't you say you were leaving? (surely you guys wouldn't be convening your little pity parties simply to elicit a bit of sympathy from admiring fans... would you?)
Try to distinguish the work of independent labs/research from that of Big Pharma (the industry).
Metacognito, you have descended into the gutter world of the troll. Colline is a lovely lady who has done a lot of wonderful things for the UK parkinsons community. Your guttural insults are simply not acceptable... Especially seeing as you choose to hide your identity with your username.
You may be living your life being angry at your situation, you medical proffesinals, indeed the pharma companies, but directing your bile at another user is unwarranted.... Anyone who chooses to troll has already lost the argument, and indeed the respect of fellow subscribers... Me included!!!
You will note I choose to register my displeasure without gutter language or bullying, some say the only way to deal with a bully is to hit them back.
But....
Instead I offer my sympathies to you, your life must be very unhappy if you choose to take it out on a stranger online..
I'm not going to ask for the moderators to exclude you, as already you have yourself thrown away any respect anyone else holds for you... Remember the troll is always unhappy alone in their cave....
Seems to me that the situation is serious, I have been diagnosed for 12 years, best thing that happened to me was my doc whispered to me "exercise is medicine", apparently did not want ti be overheard? Was over fifty years ago, that Ldopa was recognized. Good intention of the establishment is worthless!. Nothing since. Patients are out raiding research funds for what? Clear for what not.
While back someone posted TEDx Glasglow Talk on Intentional Medicine.. It spoke to me. I transcribed it. below is a large excerpt of the talk separated into small paragraphs. I found it sobering, in that it clearly indicated that besides the medical. research world. we patients needed to "look into the mirror" at how we are contributing to our health.
I feel that each speaks to Patients as well as to the medical establishment? Consider what speaks to you personally? Meet you at the end......
Most of us don’t notice our bodies until something goes wrong. And then we give that problem our full attention. We worry about it which just compounds the stress response.
And then we go to the Doctor to have the problem fixed. What if there is a better way to go deal with things? Doctors cannot fix people unless they want to get better. And it is not so much that they heal people anyway, it is more that they facilitate our body’s own ability to repair and recover.
As a society, we have been conditioned to hand over our control when we are sick.
Our modern view of medicine is not so modern. It dates back to the 17th Century when Rene DeCarte was dissecting things to figure out how they worked. He saw the body as a Machine
And we are still very much `working under the frame work of Mechanistic Medicine. Where Reduction is brilliant. You know it has helped us understand things like molecular biology and biochemistry.
It has been so effective that the general view in Western Medicine now, is that mechanistic medicine is the only kind that really works. It does work, there is no question about that. But it is not the whole story.
You cannot dismantle a computer, and study the wires and expect to understand Computer Programing. You cannot dissect a neuron and expect to understand what it’s thinking. Einstein said you cannot solve a problem with the same thinking you used to create it. We can understand sickness now, but if we want to engender health, we need to focus on health. We need to look at outliers, who are the outside on the bell curve. Those people who survive, recover and thrive against the odds. And ask what are they doing?
Research is now showing us that thoughts influence physiology. This is so obvious that we have overlooked it. Think of a sad memory and your body produces tears. Think of some one your in love with and your heart rate goes up. And think of the placebo effect. If were working from a mechanistic stand point giving someone a placebo should not affect them, but it does.
Taking a placebo alters brain activity that we can see on functional MRI Scanning. Our brains actually produce the neuropeptides that mimic the drugs we think we are actually taking. So what we think we are taking matters. This is also true for active drugs. For instance, a study by one of the world’s leading placebo researchers showed that Diazipond did not reduce anxiety for post operative patients unless they were told that they were taking it. Expectation is key
.
These people are coming from a place of utter disempowerment, yet are finding in themselves to stay focused on their intention. As Kathy said ‘You have to want to live and engage with life.”
Symptoms are a signal from ourselves that something needs to change. Thoughts are our way of talking to our cells, and they are listening. Recent scientific research has shown that neuroplasticity is a fact. Epigenetic research shows that emotion, how we feel, alters gene expression, protein production and cell function.
Well, what about giving false hope?
It is not about making guarantees, it is about identify possibilities.
We will not be asking about abandoning conventional medicine, but enabling it.
If full recovery from Locked in Syndrome and End Stage Cancer were not possible, it would never happen, but it does. So it is.. Isn’t our job as Doctors to inspire patients to better health? And what if guarded expectations of recovery are actually setting limits on Patients?
Our observations are telling us focus, belief and expectation are entangled in Health Rather then (as Doctors) dismissing them we should be curious. Just as physicts had to concede that classical physics does not cut it any more as a method to study quantum effects. We need to rethink the medical paradigms working with Health.
We have to rethink something. As Doctors we can empower people to develop more control over their well being by attending to their thinking abs feeling. DeCarte himself said, “I think therefor I am”. We are not Machines, We are Mind-Body Beings, with more influence over outcomes that we have let ourselves believe”!
I (BillDavid) find these last paragraphs most profound. There are others such as Dr Ted Kaptchuk at Harvard, whose group has also shown such phenomena such as belief and expectation have agency in health outcomes. Indeed, we are not Machines. Let’s explore Parkinson’s “Quantum like” effects…….focus, belief and expectation
As Libby asks, “WHY NOT NOW”
Comment
When I look in a mirror, I don't see a machine. leads to a harder thought, given that I have influence over my outcomes, how in the past have I spent this opportunity? Will my spending pattern be different tomorrow? Are my spending habits limiting my healing. Paradigm will have to change, for any research benefit. Probably won't.
Looking again in the mirror, still don't see a machine. Time to get my Mind and Body to have a conversation. You too?
BillD......you have my total agreement. True the human body is not a machine, but it is a miraculous functioning organism, with the ability to heal itself when cut, or a bone broken, reproduce (if you are a woman), but, sadly, eventually wears out, and replacement parts for a failing organ are not always an option.
The concept that the mind has an effect on the ability of the body to function better has been documented many times. If the medical and pharmaceutical would embrace that the patient need listen to his own body, and heed it's message, and then SHARE THAT IDEA WITH THE PATIENT, we would all be better off.
Just as you got the secret shared, "exercise is medicine", that other secret "Rx dosage could be based on need, not schedule" is important too. But in order to have sufficient Rx at your disposal at all times, an MD must determine a drug, it's dosage, and interval to have the "magic pill" available.
Obscene that in certain countries greed is the driving factor in the pharmaceutical industry and packaging and expensive advertising run the cost up to the patient.
Would that this were a perfect world, but alas......PD trudges on and on and even stop gaps like DBS for a symptom are not ideal for all.
Loved your thought "meet you at the end" the most.
There seem to be quite a few here endorsing the "English" system which I definitely support but I want to add that it is far more widespread than Great Britain. It is also the system or a variant of it used in , Australasia Canada Scandanavia and many other European countries. In the USA it is often called socialised medicine, not a term we ever use.
The competition model in the US deliveries quite a different service from the social welfare model. Both have strengths and weaknesses ( but I'm grateful to have free hospital care and affordable subsidised primary care ).
The type of health delivery system certainly shapes our thinking,. I find that post responses often reflect these different approaches.
Life Extension Foundation (LEF.org) has two books well worth reading: Pharmocracy on high price of drugs in the US and FDA: Failure,Deception and Abuse. LEF is reliable in their reporting.
the situation is more complicated than 'greedy' industries. Remember that industries which are on public exchanges have to raise money to start up and grow and for that they sell stock, which in turn is expected to yield a return to the investor. the pharmaceutical industry is a business, not a charity. the investors, having lent their money, are entitled to make money on their investment. If you want charity, then you should start up a charitable pharma company and see how that works.
separate research from pharmceutical production? who do you think will fund the research if not pharmas? certainly not the government which can't do anything particularly well due to incredible, risk averse bureaucracy, much of which is awash in corruption.
all that said, until recently anyone who could afford it would always come to the US as the cutting edge for treatment. we had the greatest medical knowledge in the world. now, the whole system is changing and we are being rationed like the UK and other socialist countries. we have a doctor shortage and a brain shortage. everything is connected to what medicare will pay for and if it doesn't pay, it doesn't exist in the minds of many in health care. that curtails possibilities research dramatically.
just so you know, we pay out of pocket for rytary and a number of other brands as 1) there is no generic for rytary and 2) our doc prefers brands to generics....they are NOT identical. rytary costs a bundle. our oop drug cost for my husband last year was over $3500! that is for drugs alone, not for any alternative treatments we may have used, none of which are covered by insurance.
First a vote of thanks to CHH for bringing this debate to the forum.
Although each of us has a unique perception of the world around us based upon our individual experiences (at every level from feeling a pin prick to hearing a pin drop etc) the way in which we process these experiences can lead to widely varying interpretations of the same input. George Bernard Shaw succinctly summed this up:
“The single biggest problem in communication is the illusion that it has taken place.”
Whenever I have witnessed verbal spats on this & other forums it has struck me that somewhere this is happening: these are people who are deeply committed to their beliefs & have a genuine desire to share for the benefit of others. It is a testament to the strength of their commitment that feelings run so high. Perhaps this leads to the impression that their value systems, the way they lead their lives, are being attacked on a personal level. Unfortunately once this point has been reached recovery becomes potentially long-term.
As I write this I find myself looking at a post I had written to support a fellow member but which never got posted because he poured vitriol over a previous post which, as he had taken some time to respond, I thought he had taken in good part.
My views on wasting time & energy on conspiracy theories are well documented in the site archives.
I am more an "up & at ‘em” personality: if entering a clinical trial is a way of benefitting myself & other PwPs then go for it.
However Donzim highlights some pertinent issues:
who do you think will fund the research if not pharmas? certainly not the government which can't do anything particularly well due to incredible, risk averse bureaucracy,
In my one international trial, involving 5 European countries at a cost of millions of pounds, I found this to be the case. For the altruists amongst you though don’t expect any better organisation or treatment than from a pharma funded trial:I speak from experience.
That said, I notice several comments on payment/ costs of treatment. Although it seems to be ‘free’ here in UK those of contribute to the system (i.e. work in paid employment)
pay very handsomely for our care & for that of others who haven’t contributed. The difference is the way in which the payments are made: because it is taken from our income prior to our ever having it in our hands we don’t miss it. That doesn’t mean it hasn’t been paid.
What you say about contributing to the system we have in the UK is very true - although I wouldn't describe it as 'socialist' as one contributer has. I've been paying in as a higher rate tax payer for over thirty years, and happy to be one. I always knew I'd get my money back in the end!
I would appreciate if we could raise the level of civility here. Please don't refer to another's ignorance. I you might disagree with them that does not establish their ignorance, I dies however establish your lack of compassion and and manners. If you can't remain civil then please learn to be circumspect in what you say here. This is a support Forum for people that are struggling with one of the ugliest diseases that afflicts us (next to rudeness among fellow travelers). Don't we suffer enough without adding insult to injury?
I don't believe that there is a conspiracy to slow the development of disease modifying therapies for Parkinson's. I do, however, believe that the hidden hand of the environment created by the medical/pharmaceutical/regulatory complex does not produce an optimal outcome for PwP.
Pharmaceutical companies are in business to make money. That, in itself, is not wrong. It does, however, guide the direction of research and development towards therapies that have less risk and can make a profit: this is at the expense of more speculative disease modifying approaches. It guides research away from non-patentable treatments. It steers the discovery of new therapies towards drug based treatments at the expense of, for instance, gadgets to reduce the impact of the disease.
It is a natural inclination of doctors to want to control therapeutic interventions. This requires patients to pay, in one way of another, for costly, but short and infrequent consultation. Contrast this with the small amounts of money that are spent on producing tools and educating PwP to take control of their own illness.
It is natural for regulatory bodies to focus on drug safety. But taking this in excess makes it very difficult and time consuming to trial a new drug. There is an opportunity cost for every good drug that is delayed in testing, with whole generations of PwP not receiving its benefits.
Taking these points together, gives us a costly, slow moving and, judging by a lack of progress in the last fifty years, ineffective environment in which to develop new therapies to combat Parkinson's.
I agree. But as much as I think that a free market is good, I also think that it is immoral to profit from the misery of others. A profession is one thing, but the pharma industry in this country is a disgrace. What happened to the idea of non-profit medicine? Couldn't we do the research with private philanthropic and government grants? Same goes for the health insurance industry - why is it referred to as an industry instead of a service sector?
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Experiences with bHaptics TactGloves for Tass vCR stimulation paradigm?
I got my wake-up call last night. I fell out of bed 🙁
PD, ill health retirement and consultants input.
Do you dare to listen to the answer?
Getting Back To The Gut Of The Matter And Some Real Hope!
