The systematic corruption of medical knowledge, ranging from clinical
trials and new diagnostic categories through practice guidelines to
physician prescribing practices, is highlighted in a special fall issue
of the Journal of Law, Medicine & Ethics (JLME, 41:3).
Okay, this was published last fall so you may call me a little slow. But the content, as much as I read (because there was so much more), clearly shows the issues. I recommend you start here and then read as much as you can (stomach).
I read that, I downloaded some articles and read them. I did not read them all. But I got the gist of it.
The systemic corruption, there term not mine, that leads to all sorts of on going problems and unethical practices. Look at this one sentence:
"....how pharmaceutical marketing also distorts medical practice, and how
drug firms are even funding social network websites for doctors in order
to quietly track their opinions on issues that affect their bottom
lines."
And you thought NSA was bad about spying on US citizens.
This next bit was taken from one of the articles by Dr. Marc Rodwin:
We will see that the pharmaceutical industry’s own purposes are often undermined. In addition, pharmaceutical industry funding of election campaigns and lobbying skews the legislative process that sets pharmaceutical policy. Moreover, certain practices have corrupted medical research, the production of medical knowledge, the practice of medicine, drug safety, and the Food and Drug Administration’s oversight of pharmaceutical marketing.
Pharmaceutical firms have found ways to influence — and often corrupt — medical research and publications, and key firms and organizations that affect physicians’ clinical choices. These include: professional medical associations, continuing medical education programs, online professional networking groups, hospital administrators, insurers, organizations that create practice guidelines and diagnostic treatment categories, and patient advocacy organizations. These institutions in turn influence physicians in general and particularly influential physicians known as key opinion leaders.
So you wonder about the over priced medications that are promised to be miracles and then are pulled from the market because of previously unknown side effects. Perhaps the causes might lie in the truths uncovered here.
Friday, January 31, 2014
Thursday, January 30, 2014
Doctor's Orders
Do you heed your doctor's orders? (Do you floss more because your dentist asks?) Two-thirds of Americans do not take their prescriptions medications as prescribed. That would mean that most of us are screw ups.
Yes there can be the issue of cost of the medications but aside from that it is sheer laziness or ignorance. I'm not sure why.
The problem with not taking your medications as requested can result in life risking events - uncontrolled asthma or heart condition can result in an expensive Emergency Room visit or hospital stay. Even if its covered by insurance that adds costs to the medical system. And its 125,000 extra deaths each year.
I do my best to take my medications as requested by doctors. They make it damn complicated.
This is what I do:
Take this one daily, except Monday's when you should take 1/2 a pill.
Take these two pills weekly, 12 hours after your methotrexate injection.
Take this pill in the morning at least an hour after you take you first pill.
Take an extra pain pill at bedtime or at least 3 hours after taking evening pills.
And if I take all my evening pills at the same time I get a stomach ache so I need to split them up and take my vitamins later.
Every week there tends to be a little pile of vitamins that I missed at one time or another.... So I'm not perfect either.
Yes there can be the issue of cost of the medications but aside from that it is sheer laziness or ignorance. I'm not sure why.
The problem with not taking your medications as requested can result in life risking events - uncontrolled asthma or heart condition can result in an expensive Emergency Room visit or hospital stay. Even if its covered by insurance that adds costs to the medical system. And its 125,000 extra deaths each year.
I do my best to take my medications as requested by doctors. They make it damn complicated.
This is what I do:
Take this one daily, except Monday's when you should take 1/2 a pill.
Take these two pills weekly, 12 hours after your methotrexate injection.
Take this pill in the morning at least an hour after you take you first pill.
Take an extra pain pill at bedtime or at least 3 hours after taking evening pills.
And if I take all my evening pills at the same time I get a stomach ache so I need to split them up and take my vitamins later.
Every week there tends to be a little pile of vitamins that I missed at one time or another.... So I'm not perfect either.
Wednesday, January 29, 2014
Amanda - you left a legacy
I learned about Amanda yesterday. She was Canadian. She was a goth. She has a brother named James. She hadn't talked to her mother for five years. I know a few little scraps about her because she tweeted her life @TrappedAtMyDesk.
Yesterday morning I read this article on The Meta Picture: http://themetapicture.com/the-final-messages-of-a-dying-girl/
Then I went to Twitter and looked up @TrappedAtMyDesk and read her tweets. All 169 of them. Go do that.
Then this morning I went back and found this video on Twitter.
It is one of the most powerful videos I have ever watched.
Finally I found this blog post by the creator of the video on the life we leave behind.
One of her last tweets was:
Don't spend time being angry at people. Forgive them. Life is entirely too short.
She left a legacy.
For the naysayers who said people with cancer shouldn't use social media? You are stupid and narow minded. Look what you could have learned.
Yesterday morning I read this article on The Meta Picture: http://themetapicture.com/the-final-messages-of-a-dying-girl/
Then I went to Twitter and looked up @TrappedAtMyDesk and read her tweets. All 169 of them. Go do that.
Then this morning I went back and found this video on Twitter.
It is one of the most powerful videos I have ever watched.
Finally I found this blog post by the creator of the video on the life we leave behind.
One of her last tweets was:
Don't spend time being angry at people. Forgive them. Life is entirely too short.
She left a legacy.
For the naysayers who said people with cancer shouldn't use social media? You are stupid and narow minded. Look what you could have learned.
Tuesday, January 28, 2014
Dear Medical Researchers
Dear Medical Researchers:
This is what I want from you, besides a cure for cancer.
Thank you.
A patient.
This is what I want from you, besides a cure for cancer.
- A medication with these side effects: weight loss, the ability to get 8 hours of consecutive sleep, and anti-depressant.
- A cure for the common cold. This should be easy after a cure for cancer.
- Medical tests that do not come with a 'pinch', a burning sensation, or being stuck with needles or any other 'ouchie'.
- A dictionary that instantly translates 'doctor-speak', either the mumbo jumbo of big words or the vagueness of a non-answer, into normal human English.
- Thrift - I want inexpensive treatments that will not line the pockets of pharmaceutical companies or others so that the term 'medical bankruptcy' will become obsolete.
Thank you.
A patient.
Monday, January 27, 2014
It was a huge mistake
I have no idea what took over my brain/body yesterday. Before 10am had done the following:
- Reorganized the linen closet - removed everything, refolded it and put it back in an organized fashion.
- Cleaned and refilled spice bottles
- Reorganized the pantry and got rid of some really expired food.
Then I went down to the kitchen and made some cookies. While they were cooking, I cleaned up my mess and then put some spices back and realized the jars were sticky and needed refilling....
And I went to put ingredients back in the pantry and.... well you get it by now.
My husband needed a new pair of shoes. I suggested DSW and looked online to make sure they had the right shoes for him. He said I didn't need to go with him - I said 'Seriously? You thought I would pass up an opportunity to go shoe shopping?' He got what he wanted and I got a nice pair of Merrell sandals for next summer from the clearance rack.
Later in the day I paid the price with a sore back from standing and doing too many things. Crap. I took a tramadol and hung out on the couch for a few hours.
Sunday, January 26, 2014
They want all the ribbons too!
Or another appalling example of Komen's good' will. I am not into Komen bashing as a rule but sometimes they just set themselves up for it.
This time in Okeechobee County, Florida, there is a woman coping with breast cancer. The local Komen affiliate in Florida does not provide financial support to women in Okeechobee county. They recognize there are underserved areas and that they can't help everyone. I can understand this. They are part of a safety net and just can't get to every woman. This isn't my problem.
Here's the problem. While she was in surgery, her husband doodled up a little ribbon logo for her.
Now they are getting a nasty letter from Komen saying it infringes on their pink running ribbon. Seriously? Don't rub salt into the wound here.
Komen is becoming lawsuit happy. You can't have anything 'for the cure' because they 'own' the damn phrase. Now they want all the ribbons? What a bunch of idiots!
This time in Okeechobee County, Florida, there is a woman coping with breast cancer. The local Komen affiliate in Florida does not provide financial support to women in Okeechobee county. They recognize there are underserved areas and that they can't help everyone. I can understand this. They are part of a safety net and just can't get to every woman. This isn't my problem.
Here's the problem. While she was in surgery, her husband doodled up a little ribbon logo for her.
Now they are getting a nasty letter from Komen saying it infringes on their pink running ribbon. Seriously? Don't rub salt into the wound here.
Komen is becoming lawsuit happy. You can't have anything 'for the cure' because they 'own' the damn phrase. Now they want all the ribbons? What a bunch of idiots!
Saturday, January 25, 2014
How long - what every cancer patient wants to know
At every cancer diagnosis, one of the first thing every patient wants to know is "How long do I have?". (If you didn't wonder, there is something seriously wrong with you in my opinion.)
And they never really tell you. You go look up the statistics and find out the five year survival rates - which are always based on what was standard of treatment then and not now. You can over think all the averages to figure out your own expiration date. You ask your doctor questions - I once asked my oncologist what my odds were (after a lot of deep thought and gut wrenching decision making) and got some nice vagueness that didn't mean squat.
Doctors seemed to be trained not to give you a solid answer. Someone posted a link to this article by a self described 36 year old non-smoking neurosurgeon who was recently given a nasty cancer diagnosis. I read it and a lot more makes sense.
The patient/doctor clarifies about what the doctors are trained to say:
"My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
And they never really tell you. You go look up the statistics and find out the five year survival rates - which are always based on what was standard of treatment then and not now. You can over think all the averages to figure out your own expiration date. You ask your doctor questions - I once asked my oncologist what my odds were (after a lot of deep thought and gut wrenching decision making) and got some nice vagueness that didn't mean squat.
Doctors seemed to be trained not to give you a solid answer. Someone posted a link to this article by a self described 36 year old non-smoking neurosurgeon who was recently given a nasty cancer diagnosis. I read it and a lot more makes sense.
The patient/doctor clarifies about what the doctors are trained to say:
"My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
I
learned a few basic rules. Be honest about the prognosis but always
leave some room for hope. Be vague but accurate: “days to a few weeks,”
“weeks to a few months,” “months to a few years,” “a few years to a
decade or more.” We never cite detailed statistics, and usually advise
against Googling survival numbers, assuming the average patient doesn’t
possess a nuanced understanding of statistics."
"In brain-cancer research, for example, while the numbers for average
survival time haven’t changed much, there’s an increasingly long tail on
the curve, indicating a few patients are living for years. The problem
is that you can’t tell an individual patient where she is on the curve.
It’s impossible, irresponsible even, to be more precise than you can be
accurate."
It is true that we can't expect a doctor to pinpoint our expiration and then we cannot expect them to give an answer with any sort of specificity. But we still ask. Because we still want to know how long.
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