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Basic Knowledge

I haven't ranted very much lately about the democratization of science, and mea culpa. So the theme for today is that we can't have a more democratic scientific institution if most people lack the basic knowledge they need to participate.

This is the story of my professional life, actually. My day job is with a community based public health agency, and my academic half is concerned with people's control -- or usually lack thereof -- over their own health and health care. (As I often say, I am a community-academic partnership.) My work concerns all sorts of issues -- mental health, addiction, environmental justice, diabetes, heart disease, you name it -- but HIV is a particularly big piece of it, in part because it has paradigmatic qualities that make it particularly instructive for many of the principal concerns of medical sociology.

Sociologists are interested in the "sick role" and how disease shapes identity, and HIV is a powerful shaper of identity, with particularly strong components of stigma, disability, community and empowerment vs. disempowerment. It's a chronic disease that people have to live with their whole lives. Its treatment is complex and requires intense, ongoing involvement with physicians and the medical institution. Treatment adherence is particularly challenging. People with HIV are a preoccupation of public health authorities, advocates and researchers because they are infectious, but in a way that is fully under their control; and because every person with HIV is a potential incubator of drug resistant virus. These related facts mean that each individual's treatment adherence, as well as their sexual and drug injecting behavior, is of concern to society in general and government agencies in particular.

So, people living with HIV have to navigate all these complexities, for the sake of their own health and autonomy, and for the sake of others. And, people who aren't HIV infected have a responsibility to understand the facts about the virus and engage the problem with both compassion and reason. Unfortunately, the average person has such limited knowledge of biology that it just isn't working very well.

Of course, once people are told that they are HIV infected, they try to learn what they need to know about their condition. But without basic knowledge of cellular biology, and evolution, many people just never really get it. I sat down once to write a basic explanation, in accessible English, of what a virus is, what a retrovirus is specifically, how HIV causes disease, how the antiretroviral drugs work, what drug resistance is and how it comes about. I thought I'd done a pretty good job, so I showed it to an HIV educator. "Oh, this is too technical," she said, "people won't follow this." But I had begun at the beginning, and explained everything, step by step, from cells to DNA and RNA and enzymes and evolution. That was just too much for people, apparently.

So instead, people are given vague and misleading metaphors, often military. HIV is the "enemy soldiers," the drugs are our soldiers, and we need to keep them in the field so the enemy can't advance. The virus "attacks" cells. And the virus is "intelligent," it can "learn" how to get around the drugs. One woman I interviewed personalizes her infection, she refers to HIV as "she." Somebody told her that viral load is a measure of how many baby viruses the mother virus is having.

Many HIV educators and advocates say we should respect these ideas, that they are somehow "indigenous to the community" and represent the points of view of the authentic people, that it's somehow insulting or elitist (yup) to tell people they are inaccurate. I think that's nonsense. People have been told these things by professionals acting as health care providers and HIV educators, who are just too lazy or don't have the time to tell the people the truth and work with them so they can understand it.

I'm not sure what to do about the general ignorance of biology, and that includes far too many high school biology teachers. But it's something we must fix.

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  • It's time to wind up my little tour of biology with an odd little subplot. You can find plenty of arguments over the definition of life, what it is exactly that makes us call something alive. This is all very interesting as we think about what we might encounter out there, beyond the earth; and it was at one time all very interesting back when we didn't understand very much about life here on our little rock. But nowadays, the answer to what constitutes life on earth is simple and unequivocal: life is cells.

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  • My thanks to the commenters on my post about my father -- and thank you particularly for sharing some of your own stories. I try to let my personal life intrude minimally here, but as a disciple of the late Irving Kenneth Zola I take very much to heart his insistence that sociology can only be called objective when we disclose ourselves. It may seem paradoxical but only if you haven't thought about it very hard. Obviously, I have a personal stake in the issues I write about here. You should only conisder me credible to the extent I reveal it.

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  • Understanding evolution is fundamental to the field of public health -- which, as I've said before, is everything. If we teach our children falsehoods, it obviously undermines their prospects to survive and succeed in the world. We aren't just battling for truth, we're battling for survival. Here are just a couple of reasons why the truth really matters.

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  • So okay, I could wallow around in wishy-washy sophomoric philosophy for a few more days, but let's put the key issue on the table. What do we mean by good health? Sure, that's technically just a semantic question, but it's actually substantive because the word "health" tends to stand in for whatever the ultimate goal is supposed to be of the blob that ate the economy -- or at least one of the blobs, the Department of Imperial Hegemony Defense being the other.

  • I'm not going to give much in the way of references or concrete history in this post -- it's basically for conceptual background. But, just pulling it out of an orifice, the story goes something like this.

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  • Our good friend Jean, in response to my asking for contributions to President Obama's "to do" list, proposes honest, effective, and comprehensive health education. I think that's an excellent addition. Although I'm afraid it may be too hot to handle for the campaign, it's something we're going to need to address after the dust settles in January.

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  • They got some pretty little women there and .. .

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  • The CDC has asked a colleague of mine to participate in a consultative group on HIV prevention for Latinos, and she asked me to contribute my thoughts on the four big questions they are asking. My pleasure, I do happen to have some opinions.

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    Item One:

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    Item Two:

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    Irving Kirsch and colleagues, in PLOS Medicine, tell us what shakes out when you look at all the RCTs that have been done on these "medications," including the ones the drug companies made sure not to publish. Naturally, the ones they didn't publish are the ones that show their products in the worst light.

  • Got a tip from reader Kathy about a little business as usual at a health insurer in Cal that ducked $35.5 million in expenses by dumping sick people. Yeah, that's what the God-given Free Market does folks. The scandal, as far as the LA times is concerned, is that their head hit-woman was given the assignment of wacking 15 sick people a month, and paid a bonus for exceeding the goal. That's not a scandal, that's how insurance companies work. The scandal is that she only got 20 grand for screwing over 301 people and saving the company $6 million bucks. Come on, Health Net, have a heart.

  • But they do try to predict health care costs ten years out. You may have seen a news brief about the new prediction that health care spending will be 19.5% of GDP by 2017. Health Affairs has made this open access, so go for it if you are turned on by wonkery.

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  • Suppose you knew you had a terminal illness, and the doctor told you there was a drug that cost almost $100,000 a year, that had not been shown to help people with your condition live any longer; had potentially serious side effects; and might even kill you itself. However, it did seem to slow the progression of signs of your disease such as the appearance of x-rays. Would you take it? As a taxpayer or a payer of insurance premiums, would you want the government or your insurance company to use your money to pay for it?

    The FDA says yes, and yes. Avastin, a so-called angiogenesis inhibitor, was just approved for use in metastatic breast cancer, even though all of the above applies, and the relevant advisory council had voted against approval. Avastin has been shown to slow the growth of tumors, but not to confer any significant survival advantage. Again, the FDA has approved a drug on the basis of a so-called "surrogate" end point, some element of a disease process or a presumed risk factor that it affects, without any evidence that the drug actually benefits patients in any subjectively meaningful way.

  • As I was intending to get back to the mind/body thing, along comes a fortuitous hook: Pfizer, the same people who give you the whorish Dr. Jarvik hawking an expensive statin that is no better than its far cheaper generic competitors (even though he has no relevant expertise and has never practiced medicine), is now marketing a new drug for fibromyalgia.

    To us medical sociologists, fibromyalgia is an endless source of fascination. Like the psychiatric "diseases," it is diagnosed based on a checklist of self-reported, qualitative and subjective symptoms. There is no known etiology and there are no physical findings whatsoever. So there is raging controversy over whether there is any such "disease" as fibromyalgia.

  • The Randomized Controlled Trial (RCT) is the so-called gold standard for determining what is and is not evidenced based therapy. When we talk about the clinical trials submitted to the FDA in new drug applications, that's what we're talking about. When people call for Evidence Based Medicine, they mostly want doctors to use interventions that have been "proven" through RCTs.

    So it was refreshing to day to hear Malcolm Gordon, who is an official of the Center for Mental Health Services, tell us about many of the reasons why RCTs don't necessarily tell us what does and does not work when it comes to mental health services. For example, they are very expensive to do, so they seldom go on long enough or have large enough sample sizes to support adequate subgroup analysis. An intervention that works for some people might not work for others, but we just don't get the information we need from RCTs to understand that. Attrition is a big problem in trials, particularly of mental health treatments, and it can seriously mess up the statistics. A truly major problem is that interventions are developed, implemented and tested in highly specialized settings and circumstances that just don't correspond to anything that is likely to happen in the real world of the mental health system.

  • and one way to beat it. Before I do my usual weekend disappearing act, I do want to encourage all you common rabble out there to read at least one medical journal, and the really great news, as I have pointed out before, is that you can do it for free.

    Public Library of Science Medicine is linked on my sidebar. If you go to the home page this month you'll see a lot of boring looking technical stuff that you might not feel like reading, but do click on through to the current issue and see what's in the table of contents.

  • While Freud got psychiatrists out of the lunatic asylum and into cushy offices, nevertheless his work only increased the influence of dualism in psychiatric practice and the relationship between psychiatry and the rest of medicine. While the theory of "functional disorders" did forge a link between mind and body, the etiology of the disorders lay in psychodynamic processes, the still ethereal stuff of mind. A psychiatric diagnosis depends on ruling out "organic illness," and vice versa.

    In the 1930s, psychiatrists tried to further advance their prestige within the medical profession by creating the field of psychosomatic medicine. In the functional disorders, patients experience physical symptoms but no organic referent for those symptoms can be found. Psychosomatic illnesses, in contrast, are "real" in that organic symptoms are observable.

  • As I have said before, I'm not going to be all over the health care proposals of the presidential candidates because whatever they are saying now is not miraculously going to become reality after January 20. It's all going to get processed through the Congressional/K Street/Moronic Corporate Media meat grinder anyway, and who knows what vile offal might emerge?

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    So, you can go to the respective web sites and read it all for yourselves, but here's my executive summary.

  • It has often been said that the family is the most violent institution in society. That probably is not true -- the prison system probably wins that competition -- but there is no doubt that the most likely assailant of a woman or child is a family member. Statistics on this point are not very reliable -- family violence happens in private, usually in secret, and usually does not come to the attention of the authorities. Advocacy groups have been known to exaggerate, but This fact sheet seems to offer a level-headed overview.

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  • Barbara Burke in the new JAMA reviews Bipolar Children: Cutting Edge Controversy, Insights, and Research, Edited by Sharna Olfman. Unfortunately, it's subscription only, but I'll give you a fair-use quote:

    IN EUROPE AND ACROSS THE GLOBE, MANIC DEPRESSION IS rarely diagnosed in the pediatric population. In the United States, on the other hand, the American Academy of Child and Adolescent Psychiatry (AACAP) suggests that it may exist in up to 13% of children.1 Prescriptions of sedating drugs (anticonvulsants, -agonists, and atypical antipsychotics) have increased up to 3-fold in the last decade.2 Both of these anomalous trends, poorly substantiated by quality research, have occurred during a time of dramatic economic change in the health care industry. Meanwhile, US children appear to be getting less mentally healthy, not more, with diagnoses of “mood disorders” and “pediatric bipolar” (PBD) topping the list. This is clearly crazy, but where does the madness lie? In the children, the prescribers, or society as a whole?

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    The ancients viewed the mind and body as a single entity. Hippocrates could write with equal authority about diseases we would today differentiate as physical or mental. "Hysteria," for example, was caused by movement of hte uterus, and depression by imbalance of the humors.

    Modern positivist philosophy, often traced back to Descartes, has famously split mind and body. From Descartes' time until very recently, if at all, the inner workings of the mind have not been readily susceptible to empirical investigation by the standards of positivist science. (Maybe functional Magnetic Resonance Imaging is changing that -- we'll see.)

  • This was unbelievable. To see this kind of frankness in a public report just made my jaw drop. Virtually all of the diabetes- and health-related material I've laid my hands on over the years has skirted these issues. Most of those publications, however, were either produced by drug companies directly, or indirectly influenced by them. My non-profit is.