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Biased pharma info “costing hundreds of thousands of lives”

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
from the Independent:
Pharmaceutical companies cause doctors to receive biased information about drugs ‘costing hundreds of thousands of lives’
The number of elderly patients being admitted to hospital due to adverse drug reactions is ‘one in three’

Loulla-Mae Eleftheriou-Smith

Wednesday 24 February 2016

Pharmaceutical companies are causing biased information to be given to doctors about the efficacy of drugs, causing an epidemic of misinformed practitioners that is “costing hundreds of thousands of lives” across the world, it has been claimed.

Speaking to The Independent, Dr Aseem Malhotra, an NHS cardiologist and a trustee of the King’s Fund health think tank, claims there is “a systemic lack of transparency in the information being given to doctors to prescribe medication, in terms of the benefits of drugs being grossly exaggerated and their side effects under reported in studies”.
 

Mary

Moderator Resource
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17,335
Location
Southern California
@MeSci - this is no surprise. My mother who had mild dementia was given an anti-psychotic medication (why!?!) (Seroquel) which has a black box warning about the dangers of giving it to elderly patients and was in the hospital the next day and eventually died I believe from the Seroquel.

The doctors are so ignorant - I don't know if they know how ignorant they are. It has to be willful ignorance. Yes, the drug companies are putting out skewed information but doctors should be aware of this. I've had to take 3 antibiotics over the last couple of years (I avoid them if at all possible), anyways, each time the first drug the doctor was going to prescribe was a medicine with a black box warning. Twice I knew this and refused the drug and got a safer alternative. The third time I didn't check, and had a bad reaction. The doctors ignore the black box warnings which are designed to keep us safe. There's no excuse.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci - this is no surprise. My mother who had mild dementia was given an anti-psychotic medication (why!?!) (Seroquel) which has a black box warning about the dangers of giving it to elderly patients and was in the hospital the next day and eventually died I believe from the Seroquel.

The doctors are so ignorant - I don't know if they know how ignorant they are. It has to be willful ignorance. Yes, the drug companies are putting out skewed information but doctors should be aware of this. I've had to take 3 antibiotics over the last couple of years (I avoid them if at all possible), anyways, each time the first drug the doctor was going to prescribe was a medicine with a black box warning. Twice I knew this and refused the drug and got a safer alternative. The third time I didn't check, and had a bad reaction. The doctors ignore the black box warnings which are designed to keep us safe. There's no excuse.
I can't 'like' that, @Mary, because of what happened to your mother - that is so shocking, and I am so sorry.

My doctors rarely seem to read much info about drugs before prescribing them. I make sure I do, but I used to assume that they did all the appropriate checks...
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Thanks @MeSci - my mother had had several mini-strokes prior to the Seroquel. The mini-strokes are what caused her dementia, so I think the Seroquel was just the last straw. She might have been okay if she wasn't so fragile. but in any event, I am so sick of doctors prescribing dangerous medicines without telling their patients anything about them - we really are on our own!
 

GhostGum

Senior Member
Messages
316
Location
Vic, AU
Still amazes me to no end that we exist within a system where profits come before all else, no care for advancing science or using it to empower and enhance the health of humanity. Big pharma has so much to answer for but everyone just deludes themselves falling on the concept that the system is accountable and the best we have.

It is a bit of a generalisation, no doubt there is much great science and discoveries, but at the same time the corruption, greed and unaccountability is bewildering. It can all also become quite a narrow and fragmented view of health and treatment when different areas and approaches need more integration; but this actually does appear to be happening on some level, but you probably need to have deep pockets to access it and the right doctors.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thanks @MeSci - my mother had had several mini-strokes prior to the Seroquel. The mini-strokes are what caused her dementia, so I think the Seroquel was just the last straw. She might have been okay if she wasn't so fragile. but in any event, I am so sick of doctors prescribing dangerous medicines without telling their patients anything about them - we really are on our own!
It must be partly the pharma companies' fault, as, for example, ACE inhibitors work by causing people to excrete extra fluid and sodium, yet there is no warning, in the info I have seen, about the risk of dehydration or low blood sodium (hyponatraemia). I developed severe hyponatraemia soon after going onto the top dose of an ACE inhibitor, but when I phoned the doctor, barely able to speak, he decided I was having a panic attack, which he also told the ambulance crew when I phoned 999 (UK version of 911) so I was left alone in an extremely ill state. I felt that I might die. Some people in that situation probably do. Awful way to die.

No one had warned me about the risk of this, and I suffered further adverse effects for 7 years, until I realised what was probably causing them, thanks to a radio programme and a message here. I asked to come off it then.
 

Invisible Woman

Senior Member
Messages
1,267
When you report an adverse reaction to a drug it should be recorded and depending on the severity a "yellow" card is raised. I think this is a system where feedback is sent back to the pharma.co.

On many drugs I am absolutely fine but there are some which will cause some quite severe reactions. Were yellow cards filled in when I raised this? Nope. Are these reactions recorded in my notes? Nope. Even when I have described the reactions I have had some idiot go " are you sure you wouldn't try it again?"

:bang-head::bang-head::bang-head::bang-head::bang-head:

ETA : Basically - you have to be your own Dr or pharmacist to protect yourself from these idiots professionals.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
When you report an adverse reaction to a drug it should be recorded and depending on the severity a "yellow" card is raised. I think this is a system where feedback is sent back to the pharma.co.

On many drugs I am absolutely fine but there are some which will cause some quite severe reactions. Were yellow cards filled in when I raised this? Nope. Are these reactions recorded in my notes? Nope. Even when I have described the reactions I have had some idiot go " are you sure you wouldn't try it again?"

:bang-head::bang-head::bang-head::bang-head::bang-head:

ETA : Basically - you have to be your own Dr or pharmacist to protect yourself from these idiots professionals.
Indeed. I reported an adverse effect to another drug before the ACE inhibitor fiasco - to the same doctor. He simply looked at the list of known adverse effects, told me it wasn't on the list, and left it at that!

Pharmacists can be as bad. My local pharmacy likes to call me in every so often for a prescriptions review, which is inconvenient as I am wanting to finish my shopping before my bladder fills up! But I have no confidence in these reviews since a pharmacist asked me if I was taking desmopressin for my muscles. o_O

A pharmacy assistant has (more than once, I think) warned me about taking an OTC med with high blood pressure. Actually the required precaution relates to low blood pressure...
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
It must be partly the pharma companies' fault, as, for example, ACE inhibitors work by causing people to excrete extra fluid and sodium, yet there is no warning, in the info I have seen, about the risk of dehydration or low blood sodium (hyponatraemia). I developed severe hyponatraemia soon after going onto the top dose of an ACE inhibitor, but when I phoned the doctor, barely able to speak, he decided I was having a panic attack, which he also told the ambulance crew when I phoned 999 (UK version of 911) so I was left alone in an extremely ill state. I felt that I might die. Some people in that situation probably do. Awful way to die.

No one had warned me about the risk of this, and I suffered further adverse effects for 7 years, until I realised what was probably causing them, thanks to a radio programme and a message here. I asked to come off it then.

Wow - that's rough - seven years! Though your doctor sounds like way too many doctors, ascribing severe physical symptoms to mental problems - sound familiar? :confused: Without doing any lab work. That must have been very scary and its unconscionable that you had problems for 7 years with that drug.

You're right, it's partly the pharma companies fault, and partly the doctors. Studies have shown that doctors discount patients complaints of "side" (actual) effects of drugs. One doctor who wanted to give me a fluoroquinolone scoffed - literally - when I refused because of potential tendon damage. Even though the damn drug has a black box warning about it - he argued with me, thought I was being ridiculous. arggghh!

One more story re my mom - a doctor gave her Aricept (which is for Alzheimer's, not stroke-related dementia). Anyways, shortly after starting it, her energy went downhill, and then she started to complain she had trouble peeing. Yeah, so they send her to a urologist who says, oh, that's her dementia. There's no problem, although, at the same time, the idiot inserts a catheter for her to wear all the time! You can imagine how well that went - trips to the ER for my elderly parents, my mom didn't know what that thing was, pulled it out, got infections, it was a mess. So then I read the fine print on the package insert for Aricept and buried in there was one line about causing this urinary problem. I immediately called the doctor who stopped the Aricept and her symptoms went away.

I agree, pharma companies do not do a good job of publicizing adverse effects, and doctors remain woefully and often willfully ignorant of them, and ignore patient complaints. I think the real problem lies in so many drugs out there now. Our bodies are not meant to take all these drugs, but that's the way of modern medicine.
 

Invisible Woman

Senior Member
Messages
1,267
pharma companies do not do a good job of publicizing adverse effects, and doctors remain woefully and often willfully ignorant of them, and ignore patient complaints.

I think the problem these days is they practice what I like to call medicine by numbers (remember those painting sets?). If you have multiple/more complex conditions or are not Joe Average it doesn't work. Otherwise I guess it saves money 'cause it's just a tick box exercise with little or no thought required. Also the UK goverment's oversimplistic target driven culture doesn't help.

Frightening really.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Wow - that's rough - seven years! Though your doctor sounds like way too many doctors, ascribing severe physical symptoms to mental problems - sound familiar? :confused: Without doing any lab work. That must have been very scary and its unconscionable that you had problems for 7 years with that drug.
The connection only became apparent when I typed up my 'official' medical records alongside my own records, replacing incorrect diagnoses with my own observations. Then it was very obvious. I now have the long-term effects from a wrist fracture (low blood sodium increases the risk of fracture) and I suspect that my extensive dental damage is also related to the prolonged/repeated low sodium.
Our bodies are not meant to take all these drugs, but that's the way of modern medicine.
There is even a word for multiple drug prescription - polypharmacy. No one can know what combinations of ten or twenty different artificial substances will have on a body.
 

me/cfs 27931

Guest
Messages
1,294
Patient to doctor: In the prescribed dosage, can't sleep and suddenly suicidal. Please reduce dosage.

Doctor to patient: Next 10 minutes chastising patient for not always taking medication in higher prescribed dosage.

Patient leaves doctor office in tears, wondering what he did wrong.

Personal anecdote. I have others.

When a patient reacts badly to a medication, why do some doctors disbelieve or go to patient-blame by default? Something is seriously wrong with medicine today. This deadly "if the pharmaceutical results in a bad reaction, it must be the patient's fault" game didn't happen when I was a child.
 
Messages
724
Location
Yorkshire, England
It sounds like people here have had bad experiences with drug reactions.

Has anyone heard of http://rxisk.org/ ?

It's a good place for info on possible drug effects. The reporting system is down at the moment, but is hoped to be back soon.

Here's the blurb from the 'mission' part of the site;

"Mission
Prescription drug side effects are now your most likely source of death, disability, or injury.

Experts estimate that only 1–10% of serious adverse events (those causing hospitalization, disability, or death) are ever reported. Not to mention the millions of medically mild adverse drug events that occur each year — ones that compromise your concentration, functioning, judgment, and ability to care.

Making medicines safer for all of us
RxISK is a free, independent website where you can research prescription drugs and report a drug side effect — identifying problems and possible solutions when it might still be possible to intervene and find a solution.

Free resources
RxISK offers tools and access to data on prescription drugs and drug side effects you can’t get anywhere else — including a searchable database of almost 6 million reports filed with the FDA, Health Canada, and RxISK.

Free RxISK report
Our secure reporting process allows you to identify which drugs you are taking and comment on their effects on your health and life. The resulting RxISK Report provides you with your RxISK Score indicating how likely it is that you are experiencing a drug side effect.

This structured tool can help you articulate what is happening to you and determine whether your doctor is listening.

If something is going wrong with your treatment, bringing a RxISK Report to your doctor as early as possible may be the difference between successful treatment and long-term disability or death.

No one knows a drug’s side effects like the person taking it
You and your doctor may have been told there is no evidence linking the treatment you are on to the problems you are experiencing. This is because most data on prescription drugs is owned by the multinational pharmaceutical companies who run almost all clinical drug trials (60% of which are never reported).They simply are not sharing data that may affect their bottom line.

If you think there is a problem, you are probably right… — Dr. David Healy

Report to your country’s drug regulator
We also provide an option where you can create a pre-filled form (with the data you have already reported on RxISK) that you can easily send to your country’s regulator to alert them to the problem. At this time, we have the capability to report to:

  • FDA in the United States
  • Health Canada in Canada
  • Yellow Card in the United Kingdom
Transparency
Transparency is very important to us.

  • We will not make available or sell to anyone your personal data.
  • We will not sell or make available user lists.
  • We will not enter into contracts or arrangements that could compromise the independence of the data we collect.
  • We believe that making this information available and visible will improve drug safety and help lower healthcare costs."
The team behind the initiative; http://rxisk.org/about/team/