Why so many Americans believe in health care conspiracy theories

There is a JAMA article out that is very telling: Medical Conspiracy Theories and Health Behaviors in the United States. It is a must-read article for anyone who wonders why the public does not seem to advocate for themselves when it comes to their medical care in the US.

The first theory studied in the article states that the FDA is purposely preventing the public from getting natural cures for cancer and other diseases because of pressures from drug companies. 37 percent of those surveyed were believers in this theory.

Even for pessimists like me this was a hard pill to swallow. But that old phrase, “Just because you’re paranoid does not mean that you’re crazy,” came to mind. I don’t think any amount of medical education would convince these people otherwise. Simply because the fundamental flaw in their thinking is based on trust not on logic. And it does not take a genius to realize that there are all kinds of reasons not to trust medical care these days.

Drug companies may be hardest hit for public mistrust. After all, we do ask patients to put the pills in their mouth and swallow. Since most patients aren’t medically trained, they have to be able to trust that what they are swallowing is actually doing more good than harm. One can look only as far as a pharmaceutical commercial to see a litany of risks that terrify most consumers. Most people are not educated enough to understand but clearly people are perceptive enough to realize that these drugs are being marketed to them and big profits are to be made.

Obamacare has not helped with trust either. Even just incompetency in web design have been enough to deter people from signing up. The lack of people signing up likely has to do with trust — or lack of it — in addition to the heroic efforts having to wade through the bureaucratic difficulties. Opponents of the ACA spend inordinate amounts on fear-based commercials to dissuade anyone in the public who may be on the fence about getting Obamacare and trusting the government. The average American has no concept of the inner workings of the business of health care and how manipulated they have been. They just know that they can’t afford it, many lack any decent sort of access to it, and it is just not to be trusted. After all, they know this much: Corporations with fat Wall Street stocks and greedy CEO’s are involved. Note to self: It is hard to effectively fight or lobby for one’s health care when you are paranoid of the system itself.

Let’s talk oncology since that is the first medical conspiracy theory that resonates with the most believers. People can see the medical system dysfunction and corporate greed which fuels their mistrust. Many may not know that hospitals charge facility fees, but in the major 5 star cancer medical centers, they can see the impressive hotel-like structures that are called hospitals where Steinway player pianos in the entrance may greet them. True, many people in more rural or poorer areas of the country may be spared this visual feast, but they are aware of huge profits in the medical industry that they believe can exploit them. Haven’t gotten to the topic of oncology yet? Neither have they.

The theory that the FDA is “suppressing” natural treatments available for cancer certainly is frustrating for any oncologist. Cancer treatment is certainly extraordinarily complicated with all kinds of risks, and it is hard for the average person to conceptualize. But intuitively I think their distorted logic makes a bit of sense. If you really can’t trust medical care because intuitively (whether you can verbalize it or not) you feel they do not have your interest at heart, then the only course of treatment is to figure it out yourself. Many people have the erroneous idea that “natural” means it is completely “safe.” Your mother might even have given it to you at one point.

Access is key. Perceived “natural” cures may be available for use, compared to the major cancer centers many of whom are unavailable through the narrow networks via Obamacare. Even if you have access to the cancer center, the severe generic drug shortages of cheap effective cancer drugs just might not be available for you anyway. Many state of the art cancer centers complain about the shortages.

And if you watch enough lawyer commercials you would definitely not want to see a doctor. Faulty hip implants, vaginal mesh lawsuits and of course drug scares fill the airwaves. And has anyone forgotten the fungal filled steroid spinal injections that killed and seriously debilitated back pain patients? The FDA looks ineffective to the public they are supposedly protecting.

Perhaps it is not surprising that there is a lack of trust in the FDA. The first conspiracy theory tells us so. The FDA is incompetent to protect: I doubt the public and this particular group in general has completely forgotten the FDA’s role in a simple steroid injection fiasco. If they can’t protect your “back” from steroids then how will they ever do with cancer?

Their thinking that the FDA is hiding natural cancer treatments likely indicates their belief that the FDA is not protecting them from drug companies’ “harmful” and “unnatural” cancer treatments. Perhaps there is something out there that is “natural” and is not harmful (according to this group). It certainly is a wish by the public not to be harmed by their medical care. Imagine that.

The question I have is what kind of cancer are they referring to? Adenocarcinoma, Hodgkin’s lymphoma or the cancer that is killing the US health care system? Although it may be difficult to make any sweeping generalizations from this small study, I think that it certainly raises the question of whether the American public is struggling with trust of its own health care system.

“Deceased, MD” is a physician.

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  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    Great post Dr. D! You should note that, according to Gallup, 46% of Americans believe in creationism, and 25% think the sun circles the earth. When this is the mindset, it becomes very difficult to have a scientific conversation regarding medicine, or anything else. At one time people just trusted their doctors to make decisions for them, but this is now actively discouraged by the authorities.
    So we want people who think humans appeared on this planet from thin air a few thousand years ago, and agree with the Roman Inquisition views on astronomy, to make medical decisions on their own….. This is the true conspiracy here, I believe…..

    • Deceased MD

      Thank you Margalit. You are spot on. After reading the JAMA letter, I realized that it is not so easy to educate some types of people. I ran into a college educated woman that bought a full breed dog because according to her, mixed breeds have a higher incidence of cancer and other maladies. When I asked her why, she said all the chromosomes got mixed up in those breeds which can create cancer. When I tried to explain otherwise, she still held her own beliefs as fact. Now how could one reason with her about healthcare?

    • ninguem

      Coming soon.

      What American healthcare can learn from La Cosa Nostra

      • Deceased MD

        I thought they were the same organization.

      • Patient Kit

        Well, there IS that lucrative knee breaking/knee fixing partnership between organized crime and orthopedic surgeons. Just saying. ;-)

        • Deceased MD

          LOL. But seriously Kit ,although this may seem absurd, i think that what is behind the fears of these people that have paranoid fears about medicine, is lack of trust in the system. What do you think? I saw you mention that on the other blog about vaccines.
          I think there is a disconnect, because the people on this blog tend to be bright and more scientific in their thinking. Sometimes we wonder-or at least I have wondered why the public is not fighting for better medical care ot outraged like many on here at the corruption played out in Corp Med. But when they are mistrustful/paranoid of the system, they really can’t advocate for themselves effectively. But what do you think?

          • Patient Kit

            As I said in my lengthy reply in the most recent vaccine thread, I think a profound loss of trust is one of the defining characteristics of the times we live in — in healthcare and elsewhere. But I’ll stick to healthcare here.

            If 50% of Americans really do believe at least one medical conspiracy theory and a significant part of the population believes that the powers that be are willfully withholding cures for cancer and letting people suffer unnecessarily because they stand to profit from doing so, that signifies a HUGE problem in the US healthcare system. HUGE. And it needs to be addressed if we are a humane culture.

            To me, the fact that some of the conspiracy theories are kind of crazy, is not the main issue. They are just the symptoms of the underlying disease of mistrust. The conspiracy theories are just the way some people are expressing their extreme sense of mistrust in our healthcare system. The real problem is how untrustworthy our system has, in fact, become. It doesn’t matter if that mistrust is expressed as emotional conspiracy theory or intellectual “rational” theory. The problem is the system — not the peeps who don’t trust it.

            As with all trust issues, it’s always hard to regain trust once we’ve lost it. Think of any of how hard it is when trust is lost in any personal relationship. It’s not always impossible to regain trust but it very very hard and takes work, time and genuine caring.

            I think the only way to begin to reverse the eroding trust in our healthcare system is to fix the system. Throwing our hands up in frustration about the crazy conspiracy theories is really just deflecting the blame for the mistrust off of the untrustworthy.

            I don’t see how we even begin to hope to rebuild the trust until we (1) start to value building relationships again, which takes time and effort; and (2) reform our system so that the profit motive isn’t the main thing that drives our healthcare system. It’s our system that is crazy, not the conspiracy theorists. They’re just trying to express the extreme mistrust and pain they feel.

          • Deceased MD

            “It’s our system that is crazy, not the conspiracy theorists. They’re just trying to express the extreme mistrust and pain they feel.”

            Brilliant Kit. That is exactly what I was saying but you said it even better. Unfortunately, I think on the other vaccine blog, the doc dismissed the paranoia as absurd when he asked about why parents are afraid to give their kids vaccines. Unfortunately many people get put off by it as crazy rather than realizing it is a sad manifestation of our broken HC system. I wish you could work under the surgeon general’s office! (Sorry just received your other post was delayed in getting to me.)

          • Patient Kit

            Heh. Well, I am a job hunting cancer patient (shhhh! on my dx), but I couldn’t handle living and working in Washington. I think DC could kill me. ;-)

          • Deceased MD

            LOL. Despite your illness you are a bright woman with a strong wit about you. Yes i think Washington has a way of killing off people. As Truman said,“If you want a friend in Washington, get a dog.”

          • Patient Kit

            Thank you. It’s good to know that I can still come across as sane and coherent. I don’t know how anybody gets through life without a sense of humor. I’m lucky that I laugh a lot.

  • Deceased MD

    After reading the JAMA article last month, I was distracted by a patient who was moving to Los Angeles that I referred for ongoing care at one of the specialty clinics at a well known hospital. The hospital web page clearly states the contact info but the patient reported that the hospital staff answering the phones had never heard of the clinic. Then she finally got a phone number that sent her to an unrelated private practice clinic about 45 minutes away from the hospital. For amusement, I mentioned it to their hospital administration medical staff office who were well aware of the error that they were inadvertently sending their patients to some unknown far away clinic. They mentioned the problem had been going on since December and I guess the phone number had just not yet been fixed. Hmmm….

    So should my patient trust this referral? Should I? Is medical care to be trusted? And is this a reliable study anyway? Would love to hear your views.

    Deceased MD

    • ninguem

      I wouldn’t trust you.

      I heard you did Jimmy Hoffa.

      • Deceased MD

        LOL. Was that before or after I became Deceased?

        • ninguem

          maybe you ARE Jimmy Hoffa.

          • Deceased MD

            Zing! LOL. Can’t argue with that.

            But seriously Dr. Ninguem, don’t you ever run across pt’s with this, especially in a rural practice area?

          • ninguem

            Bad phone numbers. reminds me of Chicago Sun-Times columnist Mike Royko.

            In the 1980′s, Illinois Bell advertised heavily, their customer service line, an 800 number. It turned out, the same telephone number, only area code 312, rang directly to Mike Royko’s desk at the Chicago Sun-Times.

            Royko asked the phone company for help, they didn’t care that Royko’s desk phone was ringing off the hook with people concerned over their phone bills.

            So……fine, the phone company won’t help.
            He wrote a column. One lady called, about her bill.

            “Well, Mrs. Kozlowski, the phone company has learned you Polacks are too dumb to handle money, so we just keep it for you.”

            “Mr. O’Reilly, we hold the money before you go and spend it all on whiskey.”

            I have no idea if he really did it. He just wrote that he did, in his weekly column.

            The phone company changed their number fast, and put up a billboard, “please don’t bother Mike Royko anymore”.

          • Deceased MD

            That’s funny! I can see the phone company had no interest in dealing with problems that did not generate income for them. but what puzzled me with my phone problem was that a whole dept in a major academic center could not receive phone calls which in part are referrals and income generated for them. I guess they don’t need/want the business?

  • Deceased MD

    Exactly. And I think it really shows up in many people as a conspiracy theory. And in a way, the lack of transparency IS a conspiracy!

  • Deceased MD

    Good point Arby with the connections you make.. Very sad but true that people are drawn to entertainment or sports and ignore the ways that they are being taken advantage of.

    And I was floored that almost 50 percent of Americans believe in at least one of these theories. Where does one even start to educate? Especially to those that already are mistrustful of the system.

    • RenegadeRN

      It doesn’t help that even healthcare professionals have become mistrustful of the overall behemoth that is healthcare in the US.

      Suspicion and self protection modes kick in and everyone is suspect. I worry that the article in JAMA will only serve to further alienate providers from patients who voice concerns about treatments and drugs… They will become “one of those” patients.

      • Deceased MD

        very perceptive of you! I have the same concern even with reaction to this blog.

        With medicine becoming a big business and marketing a strong motivator rather than science, it is hard for both pts and doctors alike to know the truth. Sometimes as a clinician, it is hard to trust the system itself and sort out motivations from say pharmaceutical companies-as only one of many examples.

        I think this kind of paranoia does make clinicians dismiss the pt. That is in fact why I wrote this, although i think many turn away at hearing about a conspiracy theory as ridiculous rather than understanding it at a deper level as it sounds like you get it!

        • RenegadeRN

          Thank you!
          I feel like I have been on both sides of this issue at times, so it is of interest to me.

          • Deceased MD

            I am so glad you take an interest. It was in all the newspapers about a month ago and i also was open eyed and interested enough to write about it. Thanks for your most thoughtful reply.

  • Luis Collar, M.D.

    Great piece, DMD… The public’s trust in our healthcare system is indeed deteriorating rapidly. And, as you correctly point out, the countless competing interests involved in what was once a primarily physician-driven process are a big part of the problem. When they see their physicians, I think many patients don’t even really know if the advice they’re getting is truly objective / unbiased anymore (e.g. is it based on the best science or merely the result of corporate / payor policies, government mandates, etc.)

    Some great insights here…great job!

    • Deceased MD

      Thanks Dr. Collar. Means a lot from you! It was eye opening that nearly 50 percent of Americans believed in a medical conspiracy theory according to the JAMA letter.

      It is interesting you mention that many pts don’t even really know if the advice their getting is truly objective. With medicine becoming a big business and marketing a strong motivator rather than science, it is hard for both pts and doctors alike to know. Sometimes as a physician, it is hard to trust the system itself and sort out motivations from say pharmaceutical companies-as only one of many examples.

      I was reading in the NY Times about a hip replacement from J and J that was kept on the market even after it was known to be faulty. Medtronics had INFUSE bone grafting that was causing pts harm and the principal investigator was dishonest in his study. The orthopedics journal dedicated an entire journal on the INFUSE. Below is an excerpt.

      “The risk of complications associated with a bone growth factor commonly used in spinal fusion surgeries is estimated to be at least 10 to 50 times greater than previously reported in industry-sponsored studies, according to a comprehensive review published in The Spine Journal.

      The review by journal editor Eugene Carragee, MD, professor of orthopedic surgery at Stanford, and colleagues documents a wide range of potentially harmful side effects associated with the product, including male sterility, urinary problems, infection, bone and nerve injury and a possible increased cancer risk. [The journal has issued a news release summarizing the findings.]”

      I am so thankful not to be an orthopedic surgeon. If you can’t trust the studies, where does one begin?

      I can imagine pts themselves must be doubtful after reading. The more I think about this, it is clear that the fundamental flaw in all of this is medicine turning into an industry. As a result pts are going to have doubts at best and at worst conspiracy theories.

      We were chatting last month about your blog on the need to educate the public. I fully agreed with you. But after reading about the conspiracy theories we are up against a lot more than I first realized. How would one even go about educating when nearly half have these distorted ideas about medicine? Really what this JAMA letter pointed out to me is how industry has to a large part been to destructive to medicine. On this blog, we are aware of how it affect MD’s but I was not aware of how the mistrust was distorting people’s thinking.

      • Dr. Cap

        This certainly illustrates the dark side of the medical/surgical device industry, and profit as a motivator should NEVER compromise patient safety (didn’t mother tell us never to lie?), however the flip side of medicine as business is innovation motivated by profit. I see this as a good thing. Who’s going to put their energy, cash, sweat and tears into R&D if there’s no pot of gold at the end of that rainbow? Lets face it, magnanimity goes only so far. Thoughts?

        • Deceased MD

          Thanks for your response. Interesting. Of course everyone needs to make a profit. I think the problem here is things have gotten out of hand. The issue here is the cost of marketing far outweighs the cost of R and D. For the new Hep B pill for example, my memory is the pill costs $1000 but the cost of the pill with R ad D was $250. A question is how much does a company need to profit in order to get the pot of gold for their work, vs helping pts with Hep B?

          But at least I give them great credit for what sounds like a break through. In general, there are plenty of other ways to make a huge profit. Take the generics for asthma that were incredibly cheap and affordable a few year back. Now the cost has gone up something like 500 percent. Why? It has been repatented and is now a brand again.

  • Deceased MD

    Got quite a chuckle out of that Joe.

    ” The person they voted turned out to be against their own interest” Now this is such a perceptive observation. Why they can’t see that and leave is so sad but happens all the time. And the corruption continues.

    i think when under stress, certain types of people come up with conspiracy theories like you said. But I so agree often there is a grain of truth in them. That old phrase, “just because you’re paranoid does not mean you’re crazy”.

  • Deceased MD

    That is a lovely story. I can relate to what you are saying. It does feel like that kind of research which many of us use to take pride in is quite diminished. To take the time to teach critical thinking such as with hype requires more resources than the rest of us have. The lobbyists are the only ones that have that kind of time and they are certainly working towards the hype end of things as we well know. On the receiving end, well it feels like there is much less to receive! And it has been engineered that way for a long time by Corp Med. I also long for the era when I trained where one had time to take pride in one’s work. look at EHR’s right now. There is nothing of substance on them! It seems there is less and less to trust even for those of us who are non conspiracists.

  • http://www.floridaorganicfarming.com/ Joe Amaral

    I think the better way to look at it is, is the fear an anxiety warranted? I believe the answer is undoubtedly yes. The National Cancer Institute has received 30 billion in the last 6 years alone and best thing for cancer is Chemotherapy which was found by accident 80 years ago. Prescription drugs kill more people each year than die on the roads each year. I could fill pages with more real statistical data to show skepticism is highly warranted. There is almost as much “best guess” and “better solution” games as actual concrete science going on in medicine.

    • Deceased MD

      You have a point. It is hard to completely generalize with cancer. Sometimes chemo is useless and I suppose you could just say it is a poison. (risk is much greater and no benefit). but there are definitely things that do work for example specific kinds of lymphoma the survival rate has jumped to something like over 90 percent in 5 years vs previously quite dismal. But i think you’re point is there is a lack of standardization in this field more than other fields of medicine and of course it makes sense that fear is warranted. thanks for your comments.