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Monday, August 19, 2013

(Dis)Ease: The American Medical Associations decision to reclassify obesity


A Month ago (June, 2013) the American Medical Association voted to reclassify obesity as a disease. This was met with some very good critique from Fat Activists (here, here, and here among others) and brief flurry of media attention - largely consisting of opinion waiving about obesity, fat people, and the future of health care in our nation-state.  The usual suspects were trotted out, interrogated, and in the end the matter was but back to bed with the usual sentiments regarding the need for more personal responsibility and education for those poor (or disgusting, depending upon the subtly of the audience) fat folks.  It was, it would seem, Much Ado About Nothing.  After all, as most news outlets informed us, the AMA has no legal standing and the move is a largely symbolic and/or semantic one. 

This is where a lot of news outlets - and scientists - got it wrong.  The AMA may not have legal power, but they certainly have epistemic authority.  This move might be semantic and symbolic, but that hardly means it is without consequence.  This move by the AMA has very real impacts upon fat individuals, upon the science investigating "obesity" and upon our ideas about disease. 

When starting this blog post I pulled up a bunch of dictionary definitions of "disease" I think I like this one the most:

1. A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.
2. A condition or tendency, as of society, regarded as abnormal and harmful.
3. Obsolete Lack of ease; trouble.

Though I will attend to the first two options throughout the Blog post, in the end I think we will find that #3, the archaic or Obsolete definition is perhaps the most salient one: Trouble. 

Defining Disease

With all the hullabaloo you might think that the AMA is the first professional association or medical authority to classify obesity as a disease.  You would be wrong.  Medicare classified obesity as a disease (and therefore eligible for benefits coverage) way back in 2004.  In a lot of ways the AMA is late to the game.  You might also be wondering, "what was obesity before June of 2013??"  After all, we have been fighting a war against an "obesity epidemic" - how do you have an epidemic without a disease?  And when you went to the doctor and they explained the BMI to you and informed you that you were obese, that seemed like a diagnosis, didn't it?  It even appears on the billing forms with an official number and everything.  It seems like we have been treating obesity like a disease for quite some time now, but prior to Tuesdays ruling the AMA considered obesity to be a "'complex disorder' (Policy 7 H-150.953), 'urgent chronic condition' (Policy D-440.971), 'epidemic' (Policy D-440.952), and 'major health concern' and 'major public health problem' (Policy H-440.902).[1]"  The council tasked with evaluating and making a recommendation about the classification of obesity as a disease (and incidentally recommended against the reclassification) noted that "disease" has no set definition.  They note that no definition of disease exists which if implemented would positively render all currently labeled diseases, as disease; "Indeed, the medical community’s definitions of disease have been heavily influenced by contexts of time, place, and culture as much as scientific understanding of disease processes.[2]" 

            Thus, part of the difficulty in deciding if obesity is a disease is that we don't really agree on what a disease is.  The Committee on Science And Public Health (CSAPH)  Rep 3-A-13 report cited an earlier report's table of definitions[3] - which amount to the conglomeration of several dictionary definitions of disease.  So the AMA did the same thing that I did for this post, or any college student writing a term paper might do.  They pulled open a bunch of dictionaries and tried to find some consensus. In the end what made obesity a disease wasn't whether it fit a definition of disease (though that in itself is an interesting query) or whether the subcommittee found evidence in the medical literature to support the classification of obesity as a disease -- No, rather like the stripping of Pluto's planetary status, Obesity became a disease by vote.

In fact a great deal of scientific knowledge becomes scientific fact through the democratic process of voting.  Voting is what made homosexuality a disease, and then a disease if it upset you to be homosexual (DSM IV), and then not a disease at all (DSM IV-TR) in the span of a few decades.  The world of classification is not the cut and dry pursuit of independent "fact" that we like to think of it being. Now, that doesn't mean that there isn't truth or fact to be accessed, it just means that the epistemological process isn't always linear and it is often influenced by time, place, and culture much more than layman discussions of science account for. In fact there is no reason to think that what we think of as a certain disease entity today, and what we label as being the same disease entity in the past - they may not be the same entity at all (For a far more eloquent discussion see Ludwick Fleck).  What is more important is that they certainly were not thought of, interacted with or treated in the same way in the past, and this changed how they were researched, conceived of and what explanations and treatments were accepted.

 So the designation of obesity as a disease, or condition, or lifestyle is a semantic move. BUT that semantic move has a lot of baggage and meaning attached to it.  It also has very real impact upon how that entity (obesity) is thought about.  We could take the AMA to task for the definition they used, or the applicability of that definition but I suspect this has been done elsewhere.  I know that other sources have discussed whether or not this decision will be good for fat patients (incidentally the AMA committee based their recommendation to not change the classification upon the assertion that such a change would NOT improve health outcomes), and whether or not the classification is valid - but I have not seen a source that gets to the epistemic impact of this move.  So it is far more interesting at this junction to attend to the fall-out of the AMA decision.

Fuzzy meets fuzzy - Defining obesity

One of the primary reasons the AMA's own council on Science and Public Health recommended against classifying obesity as a disease was a lack of satisfactory definition of obesity: "Without a single, clear, authoritative, and widely accepted definition of disease, it is difficult to determine conclusively whether or not obesity is a medical disease state. Similarly, a sensitive and clinically practical diagnostic indicator of obesity remains elusive."  We know that the use of BMI alone leads to erroneous classifications of obesity (Tom Cruise is obese using BMI).  However, it is not just a matter of weeding the fatties from the muscle bound - there is much more to an adequate definition of obesity.

What is obesity anyway?  If obesity is a disease, what is the disease agent?  Is it fat - does that mean we all have some of the disease in us?  Is it too much fat? How much fat is too much fat?  What do we use to determine what makes a certain amount of adipose tissue too much adipose tissue? Do we use population distribution? ... How many deviations from the mean are we allowed to go?  Does that mean that as the population gets fatter, the level of acceptable fat moves with the population?  Should we use Social standards?  Should it be based on the point when fat begins to affect your health?  But then we would need to know how it affects your health, what the mechanism is, when it affects your health - that sort of thing that we actually don't have a lot of information on.  We could base it on statistical evidence, so the point at which excess fat becomes correlated to negative health outcomes (though we would need to pick a threshold and have a way to measure fat that is accepted and standardized).

The difficulty, and what makes obesity research fruitful to investigate, is that defining obesity as a disease is where the fuzzy meets the fuzzy; the fuzzy ways we define disease and health, meets the fuzzy ways we define obesity.  In certain ways obesity as a disease reveals the circular logic that comes from substituting common sense for data.  


  • According to the AMA obesity is a disease because it is associated with negative health outcomes. 

  • BUT the category of obesity exists to designate levels of adipose tissue that are healthy from those that are unhealthy (by virtue of negative health outcomes).*

  • The categories are arbitrarily chosen, and quite wide

  • BUT the existence of increased mortality at the high end of the obese category supports the idea that obesity is associated with negative health outcomes.

  • Therefore, obesity is a disease.

* Except, that the methods of categorizing obesity are actually pretty bad at distinguishing who has too much adipose tissue and who doesn't.  They are also bad at accounting for why some people who exist in the category of "obese" fail to have negative outcomes, while others who do not fall into the category of "obese" do have negative health outcomes (and the often the same negative health outcomes like Type II diabetes and metabolic difficulties). 

Hmm...that does seem problematic, doesn't it?


Impacts:

So, beyond the problems of validity this move poses, what does this rhetorical turn of events do?  Why should we care?

Well, first of all it makes it so that No fat body can be healthy.  This is a big deal.  When we thought about obesity as a condition or a risk factor there left some room to think about fat bodies as potentially healthy bodies.  If excess adipose tissue in and of itself constitutes disease then no fat body can ever be healthy.

Now the idea of the fat body as always becoming (and never stable) is an idea that is pushed around a lot in fat studies.  The fat body is always becoming something - and usually it is becoming one of two things:  1) thin or 2) dead.   There is a certain narrative to the way that we talk about fat bodies.  There is a constant state of potentiality - you as the fat body are always the "before" picture.  If you are a virtuous fat body you are pursuing the end goal of becoming thin. You are actively attempting weight loss (though scientifically speaking your likelihood of success is quite slim).  If you are not actively pursuing weight loss than you are left as a fat body that is rhetorically painted as diseased and doomed.  You are dying. This AMA decision extends this logic to the realm of scientific fact production.  By making obesity itself a disease, the health or ill-health of the fat body is taken off the table.  You are fat therefore you are sick, end of story.  So even if you are fat but otherwise in perfect health - good BP, good lipids, no joint complaints, good sugar, exercise regularly, eat your vegetables, don't smoke, don't drink - it doesn't matter because you still have a disease.  Now this is very reflective of the attitudes that many physicians (particularly Bariatric physicians have) about obesity.  The fat body even when not presenting symptoms is just in a state of pre-sickness.  When presented with the case of a fat person who is in good health the response is often that the person is "just not showing symptoms yet."  This vote reflects that attitude about fatness - without new data, without addressing the literature that indicates one can be fat and healthy.  The definition has become the justification for the disease.  This vote attempts to effectively end the HAES(r) discussion.


This is why we should care about this ruling.  This move by the AMA, in defiance of their own committee's recommendation, substitutes common sense for evidence.  That is something that no one should be comfortable with.  Whether you are a Fat Acceptance advocate or you identify with the idea that fat is patient's rights issue - even if you are a obesity researcher that believes to the tips of their boots that fat is unhealthy this still shouldn't sit right with you.  This is not evidence-based medicine and it shuts down productive avenues of investigation and inquiry.


The move to classify obesity as a disease comes to soon.  We don't understand enough about obesity to call it a disease.  We can't agree on what obesity is, better yet what causes it.  Is obesity a symptom, or disease entity on its own?   How does obesity cause all the myriad diseases it is supposed to influence?  How can obesity be a symptom for certain other diseases, an outcome of health choices and behaviors and a disease all by itself?  By classifying obesity as a disease before we answer these and other important questions related to fat that we have just finally started to ask the AMA has filled in the facts we don't have - and that is going to affect how obesity is studied and treated from here on out.

Just look at the effect that the 2004 Medicare decision had - it bolstered the obesity epidemic paradigm and set in a particular way of seeing fat and obesity.  Just as we start to unravel some of that set viewpoint this decision again forces a particular way of viewing fatness that will shape research and funding in the future.   Think about obesity research as a message that we only have some of the words from (a two word phrase from a game of hangman for instance).  This move fills in the first part of the sentence and assumes that it is correct (without knowing it is), and now researchers will investigate the rest of the sentence based on that assumption. 

This solidifies obesity as a disease entity in and of itself - that creates a bandwagon for researchers - just as the obesity epidemic did.  This is a way of thinking that is intelligible to scientists and can be accessed to access funding (or in this case insurance reimbursement) but that means that only those strategies which address this way of thinking will be considered and proliferated.  To make this move without foundation is very dangerous.  It will effect everything from funding, to policy to hypothesis formation for thousands of practitioners for years to come.

Lastly, this is move that is yet another transition from what we do to what we are.  Michel Foucault argued that there was a shift around sexuality, from what we do to who we are.  With this shift comes a great deal of baggage and problems.  This shift in the way we think about obesity medicalizes a bodily state.   Fat goes from something we have, to something we are, to a state of automatic ill health.  This is highly concerning and highly problematic.  The medicalization of the fat body is not new, it doesn't start with the AMA, but this move does compound that status. 

This AMA move was supposed to be about easing the burden for fat people.  As the NY Times notes, some at the AMA hoped this change would "reduce the stigma of obesity that stems from the widespread perception that it is simply the result of eating too much or exercising too little[4]."  However, historically classifying something as a disease or as biologically based doesn't absolve the individual of the burdens of stigma.  At best the question of culpability remains (as it has with addiction or LGBT status) and at worst the condition is compounded by the stigma of disease.  We already see strains of this in conversations about whether or not Fat can be "caught" from friends and neighbors.

In the end we are left with what we started with - Trouble.




[1] http://www.ama-assn.org/assets/meeting/2013a/a13-addendum-refcomm-d.pdf
[2] Ibid.
[3] See Appendix, http://www.ama-assn.org/resources/doc/csaph/a05csa4-fulltext.pdf
[4] http://www.nytimes.com/2013/06/19/business/ama-recognizes-obesity-as-a-disease.html?_r=0

Monday, February 18, 2013

Food banks, Food justice, and a living wage.


One of the things I love about teaching and presenting material is how much it pushes you as a scholar.  You present material and in the act of preparing and putting it all together you have to write a story about the subject you are trying to teach about. Story telling is a lot of what teaching is - you have to tell the story in the right way, with the right frame to get your point across.  You have to be careful of what narrative you use, and not to traffic in tropes and stereotypes.  However, whether you are teaching about society or mathematics there still needs to be a narrative arc.  This pushes you to figure out what the large themes are, what the take away is – where the plot twists and turns, who the actors are... 

Then once you have presented your story, you get questions and it just shatters the whole narrative.  To me, this is the best part. This is the moment you really figure out what you know about a subject, and this is the moment that “Ah-ha!” can happen.  I can’t tell you how often I present something and from the questions asked and the way I am forced to explain my thinking I get a whole new train of research.

Today, I presented on a subject both near and dear to me – and a bit of a hobby – Food Politics.  Most academics I know have two subjects they study.  One is dominant and the other is peripherally related to the dominant subject, but secondary.  You have to have something to turn to when you are overwhelmed with you current subject.  For me food and food policy, is my “mistress” research.  It is what I consume in dark corners, or on my days off, or when I cannot possibly face my primary research anymore.  I love reading about the ways people think about food, consume food, and try to make it better – then rail against the results.

Today I was asked why I study what I do, because it seemed interesting but not like something people would often get into.  I gave my stock “I am a science studies person and I think proof is interesting,” answer, and then anecdotal stuff about my struggle to eat food without soy…but the student asked what my undergraduate major was (Psychology) and it made me remember where my interest in food policy really began.

My first job out of college was as a social worker.  I was a Case Manager for adults with severe mental illnesses.  I was 23, newly married, and wholly ignorant of the world. I was an idealist; I had majored in psychology in part because I thought people were interesting but primarily because I wanted to help people.  I wanted to CHANGE THE WORLD – in that way that young people want to do.  Though my stint as a social worker was brief (I burnt out after three months) it was the most enlightening and depressing experience of my young life.  Having been raised in a progressive and liberal household I had sympathies for what I saw as the “struggle of the poor.”  I understood I had opportunities as a middle-class, white, American that were in no way universal.  Until I took that job I had no idea how extensive that privilege was, or how hard it is for people to overcome with hard work alone. I had no idea what being poor or poverty looked like.  I thought I did, I thought I had seen it represented on television.  What I found out was that what most Americans think of as “poor” is really just lower-middle class. I had no idea that some people live in what for lack of a better term are called motels – week by week rentals with rooms not much larger than a single bed and rents that are quite frankly outrageous – because they can never manage to save enough to pay a month of rent up front.  Of course the cost of the weekly rental helps ensure that they never will.  I had never seen someone living out of their car while maintaining a job, or what a homeless shelter looked like.  I had never seen poverty, hunger, desperation… I do not care to list all the things I witnessed in those months, the result was that I realized how very privileged and sheltered my life had been. It was incredibly humbling, and overwhelming.  Particularly as I realized that my job as a social worker was primarily triage – stop the bleeding – I didn’t really have a chance to heal the problem.

I remember the first day it was my turn to be on food box duty.  Many of our clients (that is what they preferred to be called) made use of food pantries in addition to food stamps to meet the needs of their household.  They often could not get to the food bank themselves. We as case managers would take turns going out to the food bank with the paperwork for all the clients from out team that needed food boxes, collecting the food boxes and then distributing them.  I went and picked up eight food boxes that first day – which turned out to be eight grocery bags of food.  These were mostly shelf stable items, cans of vegetables, Spaghetti-O’s, beans, cereal, and pasta.  But that week they included a rare commodity – some fresh grapes.  The woman at the food bank was kind and matter-of-fact as she processed the paper work and helped me haul the bags to the car.  She told me how lucky this group was to get fresh fruit, they rarely had it to distribute. She then reminded me of policy that each family could only get one box each month and to talk to the clients about how to avoid needing to use the pantry in the future. 

I set off to drive those eight boxes to eight families in need.  I don’t know exactly what I expected of those homes, I only remember that what I found was not what I thought would be there.  Each home was different.  Some were in small motel rooms like the one I mentioned, some lived in apartments, some people owned their homes but just couldn’t afford food that month.  They lived all over the city.  Each place, each person, each story was different.  What was constant was that each person was happy to see me – not a common occurrence in case management. They were happy to see the food - even when some of them lamented about the type of food available to them (“I hate green beans”, “ugh, wonder bread” “oh this pasta is expired”– it ranged the gamut of tastes and concerns).  Being a young and new social worker I dutifully discussed food budgets with each person I delivered a box too.  I was shocked at what I found.  Contrary to what my younger self had thought these individuals were doing all they could to make their budgets stretch.  No, many did not cook from scratch as I had been taught to advise, but they had very good reasons not too.

Some just didn’t have the time.  One woman who cared for her sister worked two full-time jobs and cleaned houses in her “down time.”  When was she going to find the hour plus a day to prepare a meal from scratch?  Her sister was not able to prepare food unsupervised so the family relied on quick and easy to prepare meals and often fast food.  There was an elderly woman who lived on Social Security who had the time and know-how to prepare meals from scratch, but her home only had a microwave.  She didn’t even have a burner – just a hot plate that if the landlord found out about she could be evicted for.  Another woman (and overwhelmingly that day I spoke to women) did prepare meals from scratch for herself and her children, but had trouble accessing ingredients.  She did not have a car and the Phoenix bus system was woefully inadequate.  Hauling home a gallon of milk the half mile from the bus stop in 110-degree weather? – forget about it! Would it even be edible by the time she made the hour-long trip home from the grocery store? She relied on powdered milk, but the children hated it.  Again and again I found that though each person listened, either with interest or an air of knowing this was the price of the food box, they made it clear they had reasons for needing the food.  Yes, some of the clients I encountered had lost their food money through illegitimate means – they spent it on drugs or alcohol – but this was the minority of those that I saw.   Seeing the conditions they lived in and knowing the mental health challenges they faced I began to see even this as not so much a personal failing, but a symptom stemming from the system.

Ultimately the experience changed my life.  It made me realize how much of the problems we face as a society can be traced back to systemic issues.  It got me to think about food and all the moral issues that come with it.  The way we often deny the needy the right to have tastes and preferences (if you are hungry enough you will eat it).  The way we deny them the right to desires and pleasure through food.  The paternalistic notion that people are poor or hungry or lacking in means because "they don’t know any better."   It also made me an advocate of food pantries – Please people donate to your local food bank!  You cannot imagine the good they do.

The concept of a food desert has caught on lately, and certainly they are challenges to health and food security, but the problem goes deeper than putting in a grocery store.  We need to be certain the people in a community can afford to shop there – and have the time and resources needed to prepare the food found there. 

Today I was asked, essentially, if taxing soda wouldn’t work, what will?  I answered that if we want to address health we can’t just address weight – it is a poor indicator and a lazy stand in for good public health practices.  If we want to increase the health of the social body, we need to increase access to fresh food AND the ability to prepare it. It is about equalizing choice (no not that elegantly). 

 Having thought about it I would now add the following.  If you want to combat the illnesses associated with poverty, raise the minimum wage, increase public transit, and expand the safety net –including some form of universal access to health care.  We might also try subsidizing the kind of food we want the public to eat, rather than subsidizing dairy, meat and corn syrup and then calling the fall out from it a personal failing. 

A living wage will allow people to work fewer hours to meet their basic needs – which gives them time to prepare food for their families.  A living wage means being able to access transport to the store to buy food.  It means no more working poor – people who cannot access services but cannot meet their own needs even though they work full time.

Public transit means getting to a store with produce or a farmer’s market and getting it home without a car, and without it going bad.  It also means more people walking and less fumes in the air (environmental justice being a whole other important topic).

In the short term, donate to your local food bank.