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Crozet Annals of Medicine: The Trouble with Disease Mongering

By Dr. Robert C. Reiser

It is good to be back from vacation, back to the world of diseases. Medicine moves fast and you can’t be away for too long without missing something.

I was gone for nearly a month and I have already missed several new diseases and developments.

Apparently Ebola is not only ravaging West Africa but may now be massing at our southern border, at least according to Congressman Phil Gingery, MD. Dr. Gingery, a Republican from Georgia, sent a letter to the CDC demanding action to prevent the wave of unaccompanied immigrant children crossing the U.S. border from transmitting diseases such as swine flu, dengue, ebola, TB and even Smallpox to U.S. citizens. Wow. Then he held a press conference to announce his alarm.

I am not sure which is weakest, Dr. Gingrey’s grasp of geography (we don’t share a border with Africa, the only place where Ebola exists), history (smallpox has been eradicated from the world since 1977) or medicine (dengue is not transmitted person to person). I guess what is weakest is the good doctor’s social conscience, demonizing immigrant children as vectors of contagion.

Rep. Gingrey is engaging in a type of fear mongering called disease mongering and there is a lot of it going around.

Disease mongering consists of convincing a group of people that a new danger to their health has been discovered. It is usually done by drug companies to sell new pharmaceuticals.

As my career has unfolded, I have watched in wonderment as diseases I had never encountered in standard medical texts have risen to afflict the population. One of the first patients I saw upon my return from vacation was a nervous lady looking for a refill for her Restless Leg Syndrome (RLS) prescription medicine. The diagnosis of restless legs syndrome requires the presence of the following four criteria:

  • An urge to move the legs due to an unpleasant feeling in the legs.
  • Onset or worsening of symptoms when at rest or not moving around frequently.
  • Partial or complete relief by movement for as long as the movement continues.
  • Symptoms that occur primarily at night and that can interfere with sleep or rest.

My patient had none of these; she had insomnia and anxiety.

While RLS had been described in sporadic medical reports for hundreds of years, it was only when GlaxoSmithKline began marketing a drug for it in 2003 that the shockingly high prevalence of the disease (10 percent of adults) was posited. Apparently almost 40 million Americans have this disease. That is a lot of prescriptions. I am not sure how we ignored this extraordinarily common disease for so long. Even today in my practice I only encounter a tiny percentage of patients reporting it, complaining about it or on medication for it. So where did that 40 million number come from? If you guessed a single-question survey study funded by GlaxoSmithKline you would be correct. Hrumph, madam! Perhaps I am not back in the world of diseases at all.

While I essentially never see any patients on medicine for RLS, I am amazed at how many of my male patients are on Viagra for an only recently discovered epidemic of erectile dysfunction. Once again what I was taught in medical school is in conflict with a drug company’s promotional materials.  According to drug manufacturer Pfizer’s web site, over 50 percent of men over the age of 40 have difficulty getting or maintaining an erection. This unreferenced statement is patently untrue according to every study done on the topic. Nevertheless, Pfizer has managed to convince patients and their doctors that erectile dysfunction (ED) is a serious source of psychological stress and a disease state when, again, the studies do not support that conclusion at all. This disease mongering is worth $2 billion a year for Pfizer and another $2 billion a year for Lilly, the makers of Cialis, another ED drug.

I will never forget one of the first patients I saw on Viagra. He was brought in by ambulance after fainting during intimate relations. He had taken both Viagra and then nitroglycerin when he developed chest pain. Remember what the ad says, check with your doctor to make sure you are healthy enough for sex! He was not.

Viagra and nitroglycerin should never be mixed; the combination can lead to dangerously low blood pressure and subsequent fainting as had happened to my patient. What happened next was worse though. The medics informed us that his wife was on her way directly behind them. When she arrived five minutes later she was understandably agitated and demanded to know what had happened. As I explained some of the physiology behind her husband fainting during his exertions she seemed at first confused and then furious. It seems her husband was not with her when he had his unfortunate swoon. She had been called by the medics to come to the hospital when they had arrived on the scene.

Sometimes the cure is worse than the disease.

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8 Comments

  1. Hi Reiser

    The reason that these conditions have sky-rocketed in numbers is not due to some conspiracy by the drug companies to convince people that they need help. The reason is because the prevalence of chronic inflammation in our society is sky-rocketing.

    As a former RLS sufferer, I can assure you that it was real. In fact, I didn’t even know that my wonky legs had a name until my wife pointed it out. I had been suffering for about 10 years at that point.

    I don’t agree with the drugs that are given out for RLS. They don’t address the cause, but the condition is real.

    David

  2. As someone who’s a third generation WED/RLS sufferer, I can assure you we existed long before the drug companies marketed drugs for it. It sounds to me as if the author is stating that very few of existed before and that the only reason so many people now say they have it is that they have been brainwashed to think they do.

    I won’t argue that some people may think they have it and they do not. I also won’t argue the some people have it mildly and do not need medication. I would argue that those who have it moderately to severely are the majority of those seeking medication from it.

    So, where were all those people before? Suffering silently. Being turned away by our doctors. Being told we were crazy. Being afraid to bring it up because it sounds crazy. Trying to describe something that isn’t describable, so that no one understands you, unless they have it, too. Thinking that while it’s annoying, there are real diseases such as cancer so I should be quiet and not say anything. All of that, and more.

    My grandmother was institutionalized in the 60′s because she said she had these terrible feelings in her legs and they wouldn’t stop. I guarantee you she didn’t bring it up again for many, many years. I grew up watching her pace back and forth, much of the night, getting up after just 2-3 hours sleep each morning to cook breakfast as a good wife should, and being ignored by the medical community.

    Most doctors never heard of this disease. If a person showed up with symptoms, the doctor couldn’t have diagnosed it – he or she didn’t know it existed! The first time it happened to me with medical staff, I was getting my wisdom teeth removed to get braces. With the Benadryl they gave me along with the drug to put me under, I was out, but my legs were jerking. The doctor thought I had epilepsy. He woke me to ask me if I was OK and if I had epilepsy. No, I told him, that was just my jumpy legs. I couldn’t name it – it didn’t have a name as far as I knew. The next time was when I had an emergency appendectomy. When the opioids were removed (which had kept the symptoms at bay), I spent each night in the hospital wandering around, unable to sleep. No medical staff had ever heard of RLS, but some said they’d seen other people with my symptoms.

    The vast majority of people with WED/RLS have it mildly. My husband, my sister-in-law, my sister, and my mother all have it. But it rarely bothers them to keep them awake. My brother and my uncle, however, are sleepless quite often. I have it all night and part of the day, rarely free from symptoms. And my brother and I both have it in our arms, something you might think isn’t possible. But it is, as many specialists in the field will tell you. Yes, 10 percent have it, but it’s up to the doctors to read the research and know that only 1-2% (and that is per vaild and reliable research, i.e. the REST study) need medication. Does Glaxo wish all 10% of them were medicated? I imagine they do. They are the ones that marketed it as if everyone needed it. The patients are not the ones at fault here. The drug companies and their advertising started it and then doctors who don’t know what they are doing perpetuated it.

    What medication for RLS/WED did was to allow all of us who have it moderately to severely to finally name our tormentor. it allowed us to legitimatize our symptoms and finally seek treatment. It allowed us to sleep for the first time in years. It also allowed people who have other issues to think maybe this was their solution. It isn’t, but that doesn’t minimize that they, too, are aching for a medical professional to take them seriously and help them solve their problem, something that all too often doesn’t happen.

    Given that recent studies have shown that people with WED/RLS are more likely to have heart disease, depression, high blood pressure, and other “important” issues, maybe doctors who’ve thought we’re disease mongering will finally listen to us and pay attention. I’m glad my doctor does.

    • Well put.
      I was not perfectly clear that patients aren’t the ones disease mongering. Disease mongering is mostly the purview of the medical-industrial complex, to mangle a phrase from Eisenhower.
      I had hoped by publishing the diagnostic criteria for RLS that the reality of the existance of the disease was validated. It is the prevalance of RLS requiring treatment that is inflated, just as you state in your reply.
      It sounds like you have a good doctor.

  3. I have been a sufferer of WED/RLS for over 30 years. My symptoms were 24/7 and in both my legs and arms before I ever even heard of a medication for this condition.
    Agonies were suffered as I sat at my desk trying to work, trying to get sleep at night to be able to go to work the following day. Looking after a baby at the same time.
    Trust me, noone needed to ‘create’ a disease.
    I knew what I had, even my GP knew what I had – but GP didn’t know how to treat it.
    My home life, my work life, my social life were all in tatters, no going to a movie, no sitting in church. Going out for dinner meant getting a table next to a wall so that I could stand up when necessary.

    Medication has helped, it is not perfect, but my life without it is beyond description.

    To be considered a manufactured disease ?? I reckon someone doesn’t know what they are talking about.

    Betty

  4. Sorry if I wasn’t clear. The disease is real. It is the inflated prevalance of the disease that is manufactured, exactly coincident with the release of requip.

  5. As a person with WED/RLS, I just wanted to say that while I understand what you were trying to say, you did not say it well and the article therefore ends up reenforcing the negative stereotypes associated with WED/RLS. There are a lot of other examples of disease mongering that you could have used. Sleeping disorders as a whole struggle to receive wide-spread recognition as the debilitating disorders/diseases that they are. It seems people at least understand sleep apnea because it can be directly deadly. WED/RLS can ruin your life, and even when under control, means making a lot of lifestyle sacrifices to keep it under control, but those silly commercials now mean the average person thinks we’re a bunch of hypochondriacs and that they can relate because they sometimes have a rough time falling asleep.

    I also come from at least three generations of people with WED/RLS, who suffered from depression and other medical conditions due to chronic lack of sleep. They DID seek help for WED/RLS, they just didn’t have a name for it. There was nothing available, no treatment to give them. So they were sent home with anti-depressants which made the problem worse. After awhile, they stopped going to the doctor and accepted that, in that day, medicine had nothing to offer them. Finally, WED/RLS “became” a disease, and the internet helped them find a doctor who knew what it was and could treat them.

    Sleeping disorders, I think, are trivialized in part because the concept of having trouble sleeping, doing what everyone loves to do, seems funny. It’s like saying you have a disease that makes it hard to eat candy and cake, except worse because at least with those digestive disorders the evidence is physically present. This isn’t true for sleeping disorders. Who ISN’T tired all the time? The problem is you can’t physically show a person the difference between normal sleep-deprived tired and untreated-sleeping-disorder sleep-deprived tired. You can’t take a picture of it. You can’t make a pretty infographic about it. So, when I say “I can’t work the closing shift and the opening shift, I need to get more sleep than that,” people think I’m just a bit lazy, or selfish, or weird, when in reality, I’m sick, and now I end up being forced to work those shifts or lose my job, and guess what, I worked those shifts, fell asleep on the job, and ended up having to quit before I was fired. Not the end of my world, I needed to leave that job anyway, but just a glimpse at what we deal with.

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