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Talking Science With Patient Advocates

Laurie Edwards has a rare chronic disease called primary ciliary dyskinesia. Her symptoms are quite similar to those associated with cystic fibrosis, and her young life has been punctuated by numerous hospitalizations, physical limitations and the occasional near-death experience. She is a remarkably upbeat woman, and attributes her self confidence and optimistic outlook to her loving friends and family.

Laurie is part of the patient blogging community online. She reads physician blogs with interest, and wants to protect others like her from snake oil and misinformation. She recently interviewed me about my pro-science views for a new book that she’s writing. People like Laurie play a critical role in accurate health communication, and I welcome the chance to discuss science-based medicine with them. Here are some excerpts from our chat:

Laurie: There is a schism between ardent supporters of evidence-based medicine and patients who feel strongly about the value of CAM. Why do you think it is so appealing to patients with chronic illness, despite the lack of research to support it?

Dr. Val: It’s really hard to accept the limits of modern medicine. We can’t cure every disease, we can’t effectively treat every symptom, and we can’t prevent death indefinitely. It’s human nature to want to control our destinies, to reject the cards we’ve been dealt. In that sense I have the utmost sympathy for people who choose to turn over every treatment stone in the face of a daunting diagnosis, or when they are suffering from disease.

However, we have to recognize how vulnerable we are to snake oil when we are sick. There are entire industries that prey on the ill, offering patients false hope in return for pricey products and procedures. They know that we’ll do anything when we’re suffering, including buying in to a carefully constructed fantasy (often couched in “medical-sounding” jargon). Peddling fake medicine to sick people is morally unjustifiable.

In the past 10+ years of rigorously testing Complementary and Alternative Medicine, the NIH has found no single remedy that has proven effective. However, very few media outlets have had the courage to question the medical value of these therapies (notable exceptions include Wired MagazineNewsweek and the Associated Press). As a physician this disappoints me greatly, because my patients are more likely to get their news from TV than from me. And in an era where Jenny McCarthy is accepted as a medical spokesperson (she encourages moms not to vaccinate their kids), it’s very difficult to empower people with accurate health information.

So the bottom line is this: wanting to fight against disease is a good thing. But the most important battles are won with science. Compassion and kindness are part of good medical care – and CAM is usually no more than an expensive distraction from real cures or acceptance of our physical situations.

Laurie: On a somewhat related note, what are your thoughts on evidence-based medicine, patient advocacy groups, and the controversy/politics around diagnoses like fibromyalgia and chronic Lyme disease?

Dr. Val: I think that patient advocacy groups exist because our healthcare system is broken. There are many tragic stories of patients harmed by misdiagnosis, neglect, or layers of bureaucracy – and it’s wonderful that they and their loved ones are fighting so that others don’t share a similar fate.

However, occasionally advocacy groups engage in misplaced passion. They mean to protect and empower others with their actions, but when they rely on false hypotheses to promote their agendas, they can do more harm than good. Take the autism community for example. Of course parents are eager to discover the cause of autism so that it can be treated – but unfortunately, some have simply decided to attribute the cause to something random and unrelated. Vaccines are not the cause of autism – and some advocacy groups have squandered their energy on promoting a theory that is not based on evidence. Imagine how much more useful it would have been to direct that fervor to finding the real cause? Instead, some advocacy groups have whipped everyone into a state of paranoia over a preventive procedure (vaccination) that is one of the greatest triumphs of modern medicine. In a parallel universe, scientists have discovered genes associated with autism and we are now beginning to unravel the genetics of the disease. This subject is important to me because I have many relatives with autism.

As far as the fibromyalgia/chronic Lyme controversy is concerned, I think it only highlights how far we are from removing stigma from mental health issues. There is no concrete evidence for a physical cause of fibromyalgia (and many cases of antibody negative Chronic Lyme), and the patients I’ve treated have done well with increased physical activity, anti-depressants, and improved sleep. Why is it important for people with chronic sleep deprivation (with body aches and irritability) to be given the label of “fibromyalgia?” Is it for ease of coding and billing? For destigmatizing a mental health issue? Or for synthesizing symptoms into a syndrome with a name? It’s not important for people to fight about the etiology of the disease – it’s important for people to get the help and support they need to feel better and be more functional.

Laurie: Some think the direct-to-consumer advertising and the influence of Big Pharma and “me too” drugs have created a population of patients who are healthier than past generations but don’t feel it—they focus on complaints others might have just ignored. Do you agree with this?

Dr. Val: There’s no doubt that advances in medicine have extended and improved our lives. However, we are not seeing the full effect of pharmaceutical benefits since as many as 50% of prescriptions go unfilled or aren’t used correctly.

On the flip side, for-profit companies that need to please shareholders will behave in predictable ways. That doesn’t bother me so much when widgets are being sold, but when peoples’ lives are in the balance, it’s important to get people the right care, not necessarily the most profitable one. In my opinion, direct-to-consumer marketing has dealt a serious blow to Big Pharma’s credibility. Their true success lies in making good drugs that help people – not in creating false demand for medications that provide only marginal benefits.

But the untold story is that it’s become so incredibly expensive to discover, research, test, and get FDA approval for game-changing drugs, that Big Pharma’s fall back has become the “me-too” industry. This is resulting in scientific stagnation – and we’re all suffering for it.

Laurie: Health care reform is a huge topic right now, and there is much emphasis on prevention and wellness when it comes to diseases like type 2 diabetes, heart disease, etc, where lifestyle changes can make a big difference. Where does this push for prevention leave patients whose outcomes may not necessarily be as impacted by behavioral/lifestyle changes? I’m thinking here of genetic disorders and diseases where disease progression is an issue, but the more common concept of prevention doesn’t apply in the same way. What can we hope for/expect for these patients in terms of health reform?

Dr. Val: We have to recognize that 75% of our healthcare dollars are spent on the treatment and management of chronic disease, and that those diseases are 80% preventable with diet and lifestyle interventions. Of course, the other 20% are NOT preventable. There will always be people who are injured at random – perhaps by gene mutations (such as cancer), genetic diseases (like Cystic Fibrosis), or even car accidents (spinal cord injuries). It’s important for everyone to recognize that personal choices are not the basis for all disease. Just as we can’t choose our parents, we can’t choose our genes.

It’s very common for cancer patients to wonder if they did something to bring on their cancer. They become anxious and struggle with guilt. I think that’s really unfortunate because in many cases it’s simply a matter of random chance, mixed with some (potentially unknown) genetic factors. When you think of how many trillions of cells we have in our bodies, and that they’re constantly turning over or making copies of themselves – it’s incredible that there aren’t more errors made in the copying process. Cancer is just a messed up copier situation out of control.

It’s my hope that the government continues to fund research for “orphan” (rare) diseases, and supports insurance coverage for all Americans, especially for those 20% who struggle with chronic disease through no fault of their own.

It’s my hope that the government continues to fund research for “orphan” (rare) diseases, and supports insurance coverage for all Americans, especially for those 20% who struggle with chronic disease through no fault of their own.There is a schism between ardent supporters of evidence-based medicine and patients who feel strongly about the value of CAM. Why do you think it is so appealing to patients with chronic illness, despite the lack of research to support it?
It’s really hard to accept the limits of modern medicine. We can’t cure every disease, we can’t effectively treat every symptom, and we can’t prevent death indefinitely. It’s human nature to want to control our destinies, to reject the cards we’ve been dealt. In that sense I have the utmost sympathy for people who choose to turn over every treatment stone in the face of a daunting diagnosis, or when they are suffering from disease.
However, we have to recognize how vulnerable we are to snake oil when we are sick. There are entire industries that prey on the ill, offering patients false hope in return for pricey products and procedures. They know that we’ll do anything when we’re suffering, including buying in to a carefully constructed fantasy (often couched in “medical-sounding” jargon). Peddling fake medicine to sick people is morally unjustifiable.
In the past 10+ years of rigorously testing Complementary and Alternative Medicine, the NIH has found no single remedy that has proven effective. However, very few media outlets have had the courage to question the medical value of these therapies (only Newsweek and the Associated Press). As a physician this disappoints me greatly, because my patients are more likely to get their news from TV than from me. And in an era where Jenny McCarthy is accepted as a medical spokesperson (she encourages moms not to vaccinate their kids), it’s very difficult to empower people with accurate health information.
So the bottom line is this: wanting to fight against disease is a good thing. But the most important battles are won with science. Compassion and kindness are part of good medical care – and CAM is usually no more than an expensive distraction from real cures or acceptance of our physical situations.
On a somewhat related note, what are your thoughts on evidence-based medicine, patient advocacy groups, and the controversy/politics around diagnoses like fibromyalgia and chronic Lyme disease?
I think that patient advocacy groups exist because our healthcare system is broken. There are many tragic stories of patients harmed by misdiagnosis, neglect, or layers of bureaucracy – and it’s wonderful that they and their loved ones are fighting so that others don’t share a similar fate.
However, occasionally advocacy groups engage in misplaced passion. They mean to protect and empower others with their actions, but when they rely on false hypotheses to promote their agendas, they can do more harm than good. Take the autism community for example. Of course parents are eager to discover the cause of autism so that it can be treated – but unfortunately, some have simply decided to attribute the cause to something random and unrelated. Vaccines are not the cause of autism – and some advocacy groups have squandered their energy on promoting a theory that is not based on evidence. Imagine how much more useful it would have been to direct that fervor to finding the real cause? Instead, some advocacy groups have whipped everyone into a state of paranoia over a preventive procedure (vaccination) that is one of the greatest triumphs of modern medicine. In a parallel universe, scientists have discovered genes associated with autism and we are now beginning to unravel the genetics of the disease. This subject is important to me because I have many relatives with autism.
As far as the fibromyalgia/chronic Lyme controversy is concerned, I think it only highlights how far we are from removing stigma from mental health issues. There is no concrete evidence for a physical cause of fibromyalgia (and many cases of antibody negative Chronic Lyme), and the patients I’ve treated have done well with increased physical activity, anti-depressants, and improved sleep. Why is it important for people with chronic sleep deprivation (with body aches and irritability) to be given the label of “fibromyalgia?” Is it for ease of coding and billing? For destigmatizing a mental health issue? Or for synthesizing symptoms into a syndrome with a name? It’s not important for people to fight about the etiology of the di

Posted in: General, Science and the Media

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29 thoughts on “Talking Science With Patient Advocates

  1. kirkmc says:

    Wow, that’s a really unfortunate conclusion. One might assume that you’re suggesting that the other 80% suffer from illness due to some fault of their own… OH, sorry, you did say that; the other 80% are preventable.

    Sorry, that sounds very bad, as though you’re blaming the 80% for the problems they have…

  2. @kirkmc

    Well, we all need to get past finger pointing, blame, and guilt, and recognize that most individuals have significant ability to improve their health outcomes through lifestyle changes. Let’s not dwell too much on who is to blame for how we got here, let’s figure out how to get to where we want to be going forward.

    Exercise regularly, eat less (mostly plants), don’t smoke, and don’t drink or drink in moderation. Simple to say, harder to follow, but there it is: a recipe for a healthier life. It’s not a guarantee of good health, but it’s the best bet there is.

    On a slightly more accusatory tone, individuals need to learn to take responsibility for the aspects of their health that they can at least influence, if not control.

    I know someone who is overweight to the point of being very obese. He has a good number of health problems (sleep apnea, knee problems, etc), and he regularly complains that his doctor isn’t interested in addressing his various problems and the doctor blames everything on my friend’s weight. His doctor used to be my doctor, and I can believe that the doc is delivering the message in a less than constructive or productive way (I changed doctors for a reason), but my friend doesn’t want to hear that his weight is likely either the cause of or major contributor to most of his health issues. He won’t accept that the most effective way of alleviating many of his issues would be to get his weight down to a healthier level because loosing weight is very hard, which I acknowledge it is for most people.

    Lifestyle changes are simple, but not necessarily easy. It’s a lot easier to demand silver bullets like fad diets and magic weight loss pills and herbal or homeopathic remedies, and when scientific medicine doesn’t deliver those silver bullets, many turn to CAM which is all too ready to promise results and cures.

    It reminds me a little of the Jerry Seinfeld bit about motorcycle helmets. Instead of eliminating our head cracking activities, we found something that would allow us to continue our head cracking activities with less risk of cracking our heads. We seem to be spending a lot of money on the medical equivalent of motorcycle helmets in this country. Maybe we would need fewer helmets if we could reduce our head cracking activities just a little.

  3. EricG says:

    kircmc

    80% are preventable…yes, that was said. you, however, inserted “blame” which is much different.

    type II diabetes, hypertension, lung cancer and many other lifestyle/obesity related diseases are very preventable. most of the time it is merely access to information and not correctly understanding the complex medical literature and how to apply that to one’s personal situation.

    as such, increased education, communication of science to the masses and so on can help to resolve these problems. Not to mention preventative care, “workplace wellness” type programs, health and nutrition in school and other proactive interventions.

    amidst rising health care costs and an obesity epidemic, I don’t think its terribly productive to get hung up on semantics. 80% are preventable = reality. the productive conversation is “how do we prevent them?”

  4. micheleinmichigan says:

    Well, maybe Kirkmc has some point about the 80% 20% ratio, since their’s not way around the fact that life has a 100% fatality rate. :)

    Since I read a report on a study about a mouse experiment that suggested that diabetes may possibly encourage overeating (in mice) I have always wondered about the situation of someone with diabetes and how much choice they actually have.

    Tangentially, I did hear a report on NPR the other day about how some health care companies are using “healthy lifestyle” incentives to basically jack-up everybody’s insurance rates.

    But, overall, I enjoyed this article. Since my son has a congenital disorders I have often wondered how the health care reform and some of the emphasis on prevention and using the most successful techniques to safe money will play out with a patient who needs very customized care, where some of the therapies can be basically guess work and trail and error. It’s good to see that considered. Wish I had a crystal ball.

    I think the part about some autism advocacy is well put.

    Great observation about the drug companies!

    I think that is quite an interesting and compelling point about fibromyalgia. As someone who had muscle cramps and pain with weird sleep patterns, I can testify that gentle exercise (and massage) is essential to control muscle spasm pain and everything is better with sleep. But after I was diagnosed hypothyroid (years of normal TSH tests) I found the synthroid pretty much did away with the muscle cramps. I wished I could have been diagnosed sooner, but I understand sometimes that’s it’s like shooting ducks with thyroid issues. But I understand this is not fibromyalgia.

    I think Laura questions are very well chosen. I will have to check out her blog.

  5. micheleinmichigan says:

    Laurie, not Laura. Sorry

  6. micheleinmichigan says:

    Well the weight issue and exercise issue is interesting to think about. I am all for education, weight loss and exercise support, therapy and the like.

    I am very concerned about some concepts of penalizing “poor health choices” because some overweight people are actually quite healthy and I know quite a some normal weight people who are very unhealthy, but would not get picked up by any “unhealthy lifestyle” penalty. I would hate to encourage some poor weight loss programs and yo yo dieting that are actually quite unhealthy.

    From personal experience, before thyroid condition was diagnosed, I was pretty overweight. Doctors mostly say that being hypothyroid doesn’t cause weight gain. All I can say is that when you have days, weeks of being intensely tired, when you have gotten into an exercise program and then get tendonitis or muscle cramps,etc and have to quit, when you have GI discomfort. It’s just really hard to exercise, loose weight and keep it off. And it’s not like Thyroid conditions are a rare.

    So, I think some of these conditions can become a downward spiral and I think penalizing the behavior aspect of the disease is simplistic and gives the insurance companies an opening to do something very similar to what they are doing now with pre-exisiting conditions. (Which hopefully will be banned with health care reform. yah!)

    I know Val was not advocating the penalty approach. I am just responding to some ideas I’ve heard in the news.

  7. kirkmc says:

    It is clear that many conditions depend almost entirely on lifestyle choices: smoking and over-eating, for example, are serious causes of certain illnesses. Buty saying that 80% of illness depends on lifestyle choices is not only unfeeling, but downright wrong. Suggesting that, aside from the (figure pulled from the air) 20% of genetic/congenital illnesses, it’s the patients’ fault is incorrect. One example: I have arthritis, in several joints (knees, back, neck). How is that my fault? It’s certainly not genetic (though there may be a genetic predisposition). Or take high blood pressure; it’s not a “lifestyle” condition in all cases, because many people have high blood pressure in spight of healthy eating and exercise. Oh, so that one fits in the “genetic” part…

    Sorry, tossing out such firm numbers, with no source (the link at the end of the article does not mention the 80% figure anywhere), then making it sound like 80% of people have medical problems because it’s their fault is callous, and simply wrong.

  8. @kirkmc

    Read closely, she didn’t say 80% of diseases were a result of lifestyle. She said “75% of our healthcare dollars are spent on the treatment and management of chronic disease, and that those diseases are 80% preventable with diet and lifestyle interventions”

    I read that to mean that the chronic diseases on which we spend 75% of our healthcare dollars on are 80% preventable with diet & lifestyle modifications, and not that 80% of all illnesses are preventable with diet & lifestyle changes. See the difference?

  9. micheleinmichigan says:

    Karl -”Read closely, she didn’t say 80% of diseases were a result of lifestyle. She said “75% of our healthcare dollars are spent on the treatment and management of chronic disease, and that those diseases are 80% preventable with diet and lifestyle interventions”

    Huh – thanks for pointing that out.

    I am horrible at statistics. So that would mean of the 80% is a median or average? (geesh, now I have to look up median and average). So of those patients with preventable, manageable diseases some patients are 20% preventable, manageable, some are 100% preventable, manageable?

    Or not patients, diseases? some diseases are 20% preventable, manageable, some are 100% preventable, manageable?

    I have heard these numbers before. Just as a curiosity I’d sure like to see how those numbers came about.

  10. kirkmc says:

    No, that sentence is still wrong. It says:

    “… the other 20% are NOT preventable. There will always be people who are injured at random – perhaps by gene mutations (such as cancer), genetic diseases (like Cystic Fibrosis), or even car accidents (spinal cord injuries). ”

    Then:

    “… those 20% who struggle with chronic disease through no fault of their own.”

    So, the 20% have chronic disease that is not their fault. So the 80% have disease that is their fault.

    In any case, where does that 80% number come from? Sounds like an out-of-the-hat number to me, and I thought this site tendede to want all such statistics to be backed up by citations.

  11. micheleinmichigan says:

    I still really like the interview, but I sort of suspect that that statistic could be one of those “damned lies and statistics”

    I am not blaming Val for that, especially since it is an interview (preview) not a paper or article. Like I said, I think I’ve heard it before.

  12. EricG says:

    I think there are some important points being missed here.

    Kirkmc – I figured it would come to this, questioning the percentage – valid point, however…I think it was to be a euphemism for X%. Therefore (unless accomp. by a % w/source) this is to read something like, “most of our health care dollars are spent on many conditions that are largely preventable.” Fair enough? I think that’s the message.

    It stands to reason that would have conflict with this because of your personal tie to the issue and statement. Rest assured, your condition sounds pretty typical of “bad luck” in that most of us will have something go amiss over time. The kicker is with obesity and smoking (among other afflications *highly implicated* by lifestyle decisions). There are DOZENS of conditions that are associated with obesity, many of which could be mitigated or completely resolved by achieving a healthy weight range (yes, micheleinmichigan, *weight* b/c some conditions like sleep apnea or bad knees can be directly – or at least primarily – attributed to excess body mass).

    Micheleinmichigan –

    “I am very concerned about some concepts of penalizing “poor health choices” because some overweight people are actually quite healthy and I know quite a some normal weight people who are very unhealthy, but would not get picked up by any “unhealthy lifestyle” penalty. I would hate to encourage some poor weight loss programs and yo yo dieting that are actually quite unhealthy.”

    Of course some skinny people could be less healthy than an obese person and vice versa. However, I would question exactly how many obese people you know who are free from any health afflictions, but I digress. The question I have for you is: what then, by your definition, makes someone “healthy” and “unhealthy.” Ok, measure that *along side* obesity (as one health measure) and make an assessment. The physical at the doc’s office doesn’t begin, end and focus on weight…they measure a load of stuff. That’s the goal for a wellness type program.

    As well, I hate to point out that using polar language like ‘yo-yo diet’ as something that a medical program might recommend or endorse is silly. No rational person would encourage that.

  13. Rob Hebert says:

    Here, I’ll do the math; percentages can get out of hand easily.

    75% of tax dollars [spent on health care] are spent on chronic disease.

    80% of the time, chronic diseases are preventable through lifestyle (diet, exercise, etc).

    20% of the time, chronic diseases are not preventable (trauma, accidents, genetic disorder, etc).

    The upshot of this is that 60% of our tax dollars [for health care] are spent on preventable chronic disease, and 15% are spent on non-preventable chronic diseases. The implication is that a good portion of that 60% could be saved if we had sensible programs in place to promote healthy lifestyles.

    Kirkmc said: “So, the 20% have chronic disease that is not their fault. So the 80% have disease that is their fault.” That’s not necessarily true, even if the 20% statistic is accurate. Dr. Val was talking about cause, not fault. Those are distinct concepts.

  14. micheleinmichigan says:

    EricG –

    Well I’m guessing you are a proponent of insurance penalties for people who are not preventing or managing their diseases. Or you are not seeing my concerns.

    So here are only a few of my questions or concerns with this approach.

    We have a vague definition of preventable disease 80%.
    You expect me to say penalizing non-healthy behavior is great without even seeing the diseases or the amount of prevention needed? You expect me to just trust the insurance companies to handle it all? That they are working in my ( or any patient’s) best interest?

    I am skeptical. I think that CEOs mostly believe that their ethical obligation is to their stockholders first and formost.

    We are actually talking about an insurance company policy not a doctor developed plan. And you may not have noticed but sometimes the insurance companies and the doctors don’t agree. So I’m not sure what “rational person” you are talking about making these recommendations.

    Currently I have at least $5200 worth of equipment and expenses that our doctors have recommended for our son. The insurance companies have been rejecting and analyzing this for almost a year. But they will pay much more for basically the same thing, only it’s a surgery (bolt into skull). This device/surgery has 50% effectiveness rate. Strangely, for a fraction of the price, we could test the equipment before doing surgery to implant a bolt into my sons skull. The insurance company says “no”. Cool, very rational.

    Besides this my insurance company is actually great. Better than most in the area. But I’m not big on trusting them with health decisions.

    You said obese. Will it be obese or overweight or underweight? By what scale? Straight BMI, taking age or body weight (pair shaped, apple shaped, etc)? What other health factors will be considered at the same time? Will someone get penalized when they gain weight after knee surgery? Who is going to prevent that? How about pregnancy weight gain? How much penalty are we talking here? Enough to actually drive someone out of an employee health plan?

    Does mental health and addiction come into play? Does that come under preventative conditions (liver and other issues) To adequately judge someone’s health, don’t you need to know that? Some of the “healthy weight people I was talking about have significant substance abuse problems. They in fact gain weight when they “get healthy” some gain weight to an unhealthy extent. (not obese, though). SSRIs, Lithium, other medications for mental illness, commonly cause weight gain. How do you account for that? How do privacy concerns come into that?

    Steroids for asthma.

    So your comment seems to say that some doctor is going to judge each patient in terms of their individual health and how they lose wieght/get healthy. What doctor? The insurance company’s? Is that a conflict of interest? The patient’s doctor? Is that forming a good relationship with the patient if you are making a judgment that will cost them $2000 dollars a year. Won’t there be lenient doctor shopping? Do we want that?

    My guess is that it would in fact be the insurance companys coming up with a somewhat simplistic scale of penalties. Many of the requirements patients could merely lie about. Sure I stopped smoking, I drink 5-7 glasses of wine a week. I don’t take street drugs. (oh drug testing for retail workers, neat.) Of course you can’t lie about your weight on a scale.

    Oh, and how much is the paperwork going to cost? Hospital and doctor’s offices already pay a great deal for staff, consultants, to file for payments with the myriad of insurance companies they deal with. (how much of that %80 – 20% is that?) Will this just be adding to that?

    I have all these questions and I’m sure you have answers. But since I doubt you are psychic. I don’t think you really know.

    And oh, yeah, like I said before, is it just a new way for the insurance companies to find another pre-existing conditions or hiking rates?

    There really are a variety of ways this could (will) play out. Here’s an article from the Washington Post that talks about a some of approaches being used right now. http://www.washingtonpost.com/wp-dyn/content/article/2009/10/15/AR2009101503036_3.html

    And does any of this mean that I will have to talk to the barely educated, barely coherent customer service rep at my insurance company more often? Please, lord no.

    My approach is always plan for the worse, hope for the best. So sometimes I express my concerns. It’s silly I know.

    (sorry, gentle readers, for the loads of sarcasm.)

  15. Mandos says:

    I would strongly question where it has been established that lifestyle interventions are effective for so many cases of chronic disease. What is the success rate of fat people becoming signficantly less fat? Through which intervention? Scolding?

  16. Mandos says:

    Worse still than what I said in my previous post, is the direction of causality between lifestyle and disease even particularly clear?

  17. micheleinmichigan says:

    EricG – “(yes, micheleinmichigan, *weight* b/c some conditions like sleep apnea or bad knees can be directly – or at least primarily – attributed to excess body mass).”

    I have heard about sleep apnea. I’m aware that being overweight can cause or exacerbate it. My son’s plastic surgeon also told me about that. One of the surgery’s he’ll probably need has a very high risk of causing sleep apnea. My son’s PS told me that sleep apnea can cause lose of concentration, health issues and weight gain. This is why we would like to avoid this surgery. Unfortunately, it may come down to choosing between my son having good sleep or intelligible speech (meaning speech that most people can understand).

    So if he ends up with sleep apnea and then he gains weight and the insurance company wants to penalize us/him (because his weight issue is separate from his congenital issue in their eyes). Will you be the first one helping us out? Will you be helping anybody out with misunderstandings?

    I’m sorry to use some emotion here. But this is actually an interview for Patient Advocates. So I feel it’s not inappropriate to advocate for patients here.

    As I stated before I’m completely in favor of support and education for disease management of all kinds. Which our insurance company does very little of. Why not start there and see what improvement we could make when we really try in that arena.

    And, I even said I was very concerned about penalty systems. I do not completely dismiss them within some extremely control system that isn’t centered around making more profit for insurance companies or shifting insurance costs away from genetically fortunate individuals.

  18. kirkmc says:

    Yes, I agree about the penalty systems. Among other problems I have is a congenital vascular malformation in my brain. Fortunately, I live in a country with a real (ie, single-payer) health-care system, so that’s not a problem. But in a country like the US, aside from the whole “pre-existing condition” thing it could be a cause for penalties, if such penalty systems existed.

    I do, however, thing there should be a reverse penalty for non-smokers.

  19. Rob Hebert:

    “80% of the time, chronic diseases are preventable through lifestyle (diet, exercise, etc).”

    Do you have any scientific evidence for that claim?

    Moreover, I’d like to know how diet, exercise, etc. can prevent chronic diseases like sickle cell anemia, rheumatoid arthritis, multiple sclerosis, juvenile diabetes, lupus, etc. etc. etc.

  20. I tried to find the primary source of the World Health Organization’s “80% of chronic diseases are preventable” claim. I couldn’t find it (didn’t try very hard, I’ll admit), but I did find some quotations:

    If the major risk factors for chronic disease were eliminated, at least 80% of heart disease, stroke and type 2 diabetes would be prevented; and 40% of cancer would be prevented.

    The major risk factors for chronic disease are an unhealthy diet, physical inactivity, and tobacco use.

    One billion adults are overweight – without action, this figure will surpass 1.5 billion by 2015.

    I don’t believe the first assertion. I suspect that its authors exaggerated the role of these “major risk factors,” to say the least.

    Regarding obesity, I agree with Mandos that although it may be preventable through a lifestyle intervention, this is easier said than done. There is a reason that such interventions have had such a poor showing: for the vast majority of people, limiting caloric intake is uncomfortable and distracting. It hasn’t worked at the population level, and it ain’t gonna work—any more than “abstinence” works as a contraceptive.

    For the obesity ‘epidemic’ we need, and we’ll eventually get, a real Silver Bullet: a safe pill that actually diminishes hunger, for example. We know that this will happen because hunger involves biochemical signals that are amenable to pharmacologic modulation. We’ve had glimpses of this already: the combined “Fen-Phen” pills of a few years ago actually worked, but were found to be too dangerous; the same appears to be true for anti-cannabinoid receptor drugs, as common experience might predict (chuckle). It’s only a matter of time.

  21. micheleinmichigan says:

    I went on a little hunt and couldn’t directly find the 80% chronic preventable/managable disease data. I am guessing that it refers to some data that seems thrown about on several state sites that says ’80% of health care costs are for chronic disease.’ This seems to be ALL chronic disease. Childhood asthma, type 1 and 2 diabetes, heart disease (any kind), MS, etc. But I could not find the source. It appears to be NHA or MEPS.

    I did find this study that attempts to find the cost of overweight and obesity in healthcare. It does talk about some NHA and MEPS figures as well. It says.

    “According to our NHA estimate of $78.5 billion ($92.6 billion in 2002 dollars), annual medical spending attributable to overweight and obesity (9.1 percent) now rivals that attributable to smoking, which ranges between 6.5 percent and 14.4 percent, depending on the source.”

    http://content.healthaffairs.org/cgi/content/full/hlthaff.w3.219v1/DC1

    I do not know how reliable this organization is, but they do lay out their approach. The World Health Organization also has lots of general statistics and has a page on chronic disease in the U.S.
    https://apps.who.int/infobase/report.aspx?rid=111&iso=USA
    somewhat focused on public health policy I think. Out of time to read it.

    enjoy

  22. DownWithWoo says:

    If we’re going to talk about healthcare costs & lifestyle choices….

    What about the person who plays football who is always getting injured? The runner with chronic plantar fasciitis? The skier who is now a quadriplegic?

    What about the cost of treating people who’ve been in car accidents? I live in a city with an excellent public transit system – for your average person there really is no need to drive. In most cases, driving is a “lifestle choice”.

    In terms of what should be covered by public healthcare, if we remove all accidents and illnesses connected with lifestyle choices, it doesn’t leave much.

  23. geo says:

    I wish Chronic Fatigue Syndrome had been grouped in with the Fibromyalgia and chronic Lyme disease question, especially given the recent article in Science on a possible link with XMRV.

    Actually, in regards to Chronic Lyme’s disease being a psychological problem, is that based on the assumption that those who’ve suffered from Lyme’s disease are no more likely to suffer from further health problems than the population at large?

    I don’t know much about it, but I thought it was generally accepted that Lyme’s disease patients are more likely to go on to suffer chronic health problems following infection (http://www.acpinternist.org/archives/2007/01/lyme.htm has both sides of the debate talking as if this is the case).

    Isn’t it a bit of a stretch to assume that when this infection is followed by chronic health problems they are psychologically based, just because we’re currently lacking evidence of a physical cause? Or am I just ignorant of the evidence that supports this claim?

  24. Rob Hebert says:

    Amy Tuteur, MD:
    I don’t know where Dr. Val got the 80% figure from. I was just quoting it from the above interview because the syntax was confusing some posters regarding what Dr. Val’s actual claim was. It looked like a few people were interpreting Dr. Val’s statements to mean that 80% of all disease was preventable, rather than 80% of chronic disease, that’s all. I’m not sure that those figures are accurate–which is why I said in my original comment “even if the 20% statistic is accurate.”

  25. EricG says:

    so much to respond to…I’ll try and keep it short (but will likely fail).

    Micheleinmichigan

    I agree with and understand the concern behind every single question you ask (and all of the questions asked by others). Finding answers and making it work is hard. I was exceptionally remiss if I conveyed any notion of this being an easy problem to address. The good news is that there are concerned citizens such as you and I (and everyone else on this forum) that choose to get informed and help influence good decision making.

    The numbers you provide on the “costs of obesity” are even larger than the numbers I would have relied on. Does this not demand attention? Please do not misinterpret that I think “people should manage or prevent all their diseases” as a blanket solution to every problem. There are 100′s of diseases that are not preventable, strike randomly, afflict very few or very many – my examples of obesity and smoking should rather read as specific cases of obesity and smoking.

    Obesity has grown just about every decade and continues to grow – it also has serious health consequences that are known, well studied and *highly* resolvable (as compared to MS, schizophrenia, Huntington’s, ALS, autism, type I diabetes, trisomy 23, dystonia…you get the idea). Smoking and its health outcomes, while down overall from years past, have some of the most compelling cause and effect evidence available in medical literature. Remember, this behavior essentially entails repeatedly lighting known carcinogens on fire and inhaling them directly into the lungs. These two things are of great concern to me and cost society a buttload of cash.

    I am sorry that your son is afflicted with a serious condition. Special cases require special exceptions. However, the distinction must be made between knee replacement surgery, your son’s condition, pregnancy (not sure how Title VII and the ADA apply…but penalizing pregnancy as a weight gaining condition might be illegal anyway)…and “hello I smoke and weigh 300 pounds, btw I also have hypertension, sleep apnea, bad knees and type II diabetes that I would like you to subsidize the care of such conditions through your paid and unutilized health insurance costs.” I actually never said penalty either…call it a support system…call it what you want. My points are directed at:

    1) There is a problem (healthcare costs = mind bogglingly high)
    2) This problem has (theoretically) a range of solutions (one of which is to incentivize and/or penalize health outcomes)
    3) Refine such a solution, implement, reap rewards (of course…easier said than done)

    If it involves penalties, I don’t care. If it involves “super supportive loving systems oriented towards organic human growth experiences,” I don’t care. The result I would like to see is healthier people. The route is semantics and eventually up to the rate payer if they would rather a) lose 100 pounds and quit smoking, b) get penalized or c) attend a healthy cooking seminar, smoking cessation clinic and weight management classes. I would hope that all options available would encourage (somehow) weight loss and smoking cessation. I know I am begging for burns by suggesting c), but substitute in whatever you feel to be *the most effective* thing you could POSSIBLY do to encourage weight loss and smoking cessation and that’s the point.

    Will a miracle pill surface? I absolutely freakin hope so! However, until it does…the costs grow.

    Here are counter points to your special case. My grandpa has some chronic pinched nerve thing in his back. The doctor told him some at home physical therapy (stretching, light exercise etc.) could resolve much of his pain. Instead he has bought all sorts of contraptions (neck hanging gadgets) and relies on industrial grade ibuprofen for his pain management rather than change his routine. This pain avoidance/management has led him down other paths because of his tender mobility that has now required other gadgets and doctors visits (support hose, cortisone shots etc.)…again, where some simple behavior change would have avoided cost and *mitigated his own pain*. He also has high sodium and cholesterol which is giving him regular palpitations/arrhythmia (forget exactly what it was). Guess who still powers through the cured ham?

    My uncle has been roughly 80 pounds overweight for…maybe 30 years. Instead of adjusting his diet and incorporating exercise he choose to get swept up in the woo of Nu Skin and their anti-oxidant pyramid scheme. He pumps his stomach full of worthless supplements, eats cheese burgers, creamed spinach, bloody red steaks, buttery mashed potatoes, drinks and so forth but flips his lid when a waiter pours ice in his water “because that is the worst thing you could do for your health…it just solidifies your food so you cannot digest properly” *barf*

    For the good ones…My dad has ocular melanoma that is in remission from radiation therapy. He “blames” it on himself (super rare cancer for those not in the know) and exercises and eats right to help “beat it” and also benefits from those weird side effects of “increased energy” and “youthful appearance,” but I digress. My mom got a bad report on cholesterol, was advised to cut the butter, did so, and also her score X points in the process thus avoiding eventual drug intervention, bypass surgery etc. I couldn’t be more proud of their reason and determination to live healthy lives and obviate the need for unnecessary medical intervention.

    Everyone has an “aunt sally” to void the evidence. I am talking about most people, most of the time. Your family should get a break, members of mine should get the stick.

  26. micheleinmichigan says:

    ” I actually never said penalty either…call it a support system…call it what you want. My points are directed at:”

    Well, I assumed since you criticized my comment about penalties that you were disagreeing with me. Have I at any point suggested that obesity and smoking are NOT a problem or should not be addressed? I was merely suggesting that a penalty systems seems to have numerous potential pitfalls. When constructing ANY system, one should balance pitfalls and benefits. I have seen no real arguments on the health benefits of a penalty systems.

    Feel free to provide evidence if you disagree.

    “If it involves penalties, I don’t care. If it involves “super supportive loving systems oriented towards organic human growth experiences, I don’t care. The result I would like to see is healthier people.”

    Well, since my original point was and has continued to be that I’m concerned about penalty systems. Then we are in agreement, to the extent that you don’t care what it is and I would like to try interventions that are more science and medicine based than economics and politics based.

    I was in no way trying to void any evidence with my anecodotes. (Just as I was not attempting to be polarizing with my “yo yo diet” reference either, only using the vocabulary familiar to me). I was providing examples of how a penalty system could make mistakes or be misused.

    If you do not prefer a penalty system over say something like providing reasonably priced healthy meals to employees on site (say a soup and salad bar that costs the same price as a value meal) or free counseling to quite smoking or school meals that are healthy and not full of empty calories (because I don’t think that kids should be getting donuts, Doritos and pop at school), I’m not sure what your problems with my comments are.

    What is it you would like me to say?

  27. micheleinmichigan says:

    Sorry, the above comments are directed to EricG’ s comment.

  28. micheleinmichigan says:

    EricG “I am sorry that your son is afflicted with a serious condition”

    If you feel the need to apologize (which, really there isn’t a need), in cases of people with disabilities I’d like to suggest “has a serious condition” or “was born with…”. It’s easier and more comfortable for some people with disabilities.

    Thanks.

  29. EricG says:

    Micheleinmichigan

    as what often happens, we agree, lol. the screen of the internet and intermittent text conversations often introduces things that aren’t really there.

    we both advocate some totality of health…sbm…how do we get there? well, “lets” (im not a doctor or policy maker) find the best way…

    curious, i thought i changed “afflicted” to “has” or something. your point is well taken.

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