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by doitLP·7y ago·view on hn ↗
I used to work for an open medical information company that published publically available conflict of interest data and informed consent information on a range of medicines and procedures.

I was constantly astounded by the open corruption in the Pharma industry and complete lack of informed consent as to risk of side effects, how studies data was presented or skewed when being used, who was paying for studies (almost always the company making the product), how much advertising was being done at the med school level and by the economics of a drug with serious side effects (it’s almost always profitable to sell the drug anyway. The class action payments usually don’t even come close to the profits generated).

Most of the data in this article about the Sacklers and Oxy has been known and available for 10+ years. I remember working on a piece about the skewed addiction numbers. It was literally being marketed as “non-addictive”. Obviously a lot of good people work in Pharma and there are lifesaving medicines, yes. But the profits to be made are so vast and the companies so beholden to shareholders that we should ALWAYS demand full informed consent from our doctors on ALL medical interventions.

Example: commercials for Lipitor claim a 1/3rd reduction in the risk of heart attack by taking the drug. Your doctor prescribes it because it’s the _standard of care_ for your profile. Chances are high he hasn’t read any studies recently. What you both don’t know is that 1/3rd stat comes from a company-funded study in which 100 high-risk patients taking Lipitor who had already had a heart attack were compared to 100 high-risk patients who had not had a heart attack and who were not taking the drug. Over the course of the study (years I think) 2 people in the first group had a heart attack, and 3 of the non-drug group had a heart attack. Ok sure it’s 1/3rd but it’s actually only a 1% decrease in YOUR risk. Set that against all the side effects of taking the drug for years including the mental side effects now taking the spotlight. And those in the study were _high risk patients_ who already had a heart attack. And they were men only. At the time of the commercials there was no study on its effects on women. Yet 45% of the entire US adult population as of 2009 was on a cholesterol lowering medication. 45%! There so much info like this, on bypass surgery, stents, quitting smoking drugs...the list goes on.

The company I worked for had some smart, dedicated people but they couldn’t figure out a way to properly monetize it and the company shuttered after a few years. I think there’s definitely room for some disruption there still and I hope someone can figure it out. I for one would pay handsomely for a data-driven service that gives me all the info on offered drugs so I can make true informed consent. I’m guessing doctors would like it too since none of them have time to actually read studies and pick them apart.

The point: take whatever medication or do any surgery you need but BE AS INFORMED AS POSSIBLE before you do. We are often scared of our doctors’ authoritarian pronouncements that are all too often are based on unsound evidence, even if it is the “standard of care”. Find a doctor you can work WITH to get the best care for you. If you can’t do that become your own advocate aknd read as much of the literature is possible. You can’t afford not to.

4 comments
Really interesting comments, thanks for taking the time to share.

> become your own advocate

Really resonates with me. Almost every time I go home and hang out with my parents, they share a new horror story about some close call with their medical treatments. (They've both had--and beat--cancer.) Last trip they were telling me about one of the days my Dad was getting chemotherapy; they needed to get a blood draw before the chemo was administered, and the cancer doc had instructed _them_ to make sure the phlebotomist installed a catheter for the initial blood draw, because (if I understood correctly) the extra needle hole in the vein from the blood draw can cause the chemo meds to leak & stagnate near the hand (which risks _the hand_...) But the phlebotomist didn't ask/confirm/want to, apparently because of some damn billing difficulty since the labwork division was different than the oncology division.

My conclusion is that there's a huge opportunity for more patient advocacy to really improve people's lives. Your "data for informed consent" angle sounds like a way more scalable path toward something like that!

Doctors are just technicians these days. Asking about medical studies with most doctors is like asking your cable T.V installer about the implementation details of digital compression algorithms.
I've heard this about statins in general, but do you have some bookmarked citation for this? I would like to have it available if the doctor ever tries to get me onto this stuff.
I will look. But in the meantime, this is by one of the doctors I worked with at the company. I know it has that study in the references: https://www.amazon.com/No-Nonsense-Guide-Cholesterol-Medicat...
What is your view on vaccines, and the debate surrounding them?