June 8, 2007

Michael Moore wants to hear your horror stories

Not so long ago, I blogged about my trials and tribulations with Blue Cross Blue Shield of NJ. I got a very interesting response that I will blog about later today or tomorrow, though I can’t say the outcome has been to my liking.

While my problems with BCBS have not reached the status of truly horrific, I do think they are indicative of the how many insurance companies operate: with total lack of transparency and often, integrity (again more on this later).

For those of you who have had horror stories, Michael Moore is now calling for collecting your horror stories as a consequence of the American health care system and health insurance companies. Do take the time to make a video if you have a story to tell.

May 15, 2007

Beyond Labeling, Skin Deep

Category: patient_activism,Politics,Tech — Biella @ 2:34 pm

While most of our products are labeled, labels often don’t reveal all that much because really who can decipher the meaning of all those weird oxidase-perio-para-whatever in your shampoo? But thanks to the environmental working group, you can access a very large database Skin Deep, which is a “a safety guide to cosmetics and personal care.” So find out what toxic stuff are in your personal care products, ditch em, and take further action:

As they state on their website:

Due to gaping loopholes in federal law, companies can put virtually any ingredient into personal care products. Even worse, the government does not require pre-market safety tests for any of them.

This is unacceptable. Sign the Environmental Working Group’s petition to Congress to turn this around and make personal care products safe.

So check out the database and the petition.

November 17, 2006

The Politics of (lyme) bacteria

Category: Academic,patient_activism,Politics — Biella @ 8:53 am

Recently I read an amazing review of patient advocacy and health (counter)movements by Steven Epstein from the STS program at UCSD. It is still a draft but bound to be published in the New Handbook of Science and Technology Studies and when it is, anyone who works in this area will gain so much from reading the review. It was stunningly broad yet highly specific. He is able to synthesize an enormous literature on patient advocacy, a field that has seen a blizzard of activity, especially in the last twenty years. Along with providing points of entry and departure into the field, he also examines who the burgeoning interest in the field of STS.

What I found interesting is that there is very little work being done on a topic I happen to know a lot about, lyme disease and whose politics I have been following since at least 1999. I am not sure why the lacuna but it is an odd disease dripping and screaming with controversy and seems to stand apart from many illnesses, in part because of its odd dual existence. On the one hand, it is an illness that the medical establishment totally recognize as “real” (and thus in some respects is unlike the class of syndromes from MCS to chronic fatigue, which another STS researcher, Joe Dumit provocatively describes as “illnesses you have to fight to get”).

But that is only half the picture because mainstream medicine tends think that lyme is not only easy to diagnose but also to treat, so much so that if a person thinks they have lyme (even after a round of antibiotics or lacking diagnostic markers), the are either seen as suffering from something else (and usually then told they have one of those highly contested syndromes), or more often just crazy. So it exists dually: at once recognized but only narrowly, so that in another form, that of chronicty, lyme cannot exist.

It is this dual quality of lyme that defines and shapes its politics and just recently, new developments have fueled the controversy. Namely it follows from the Infectious Diseases Society of America new guidelines for the diagnosis and treatment of lyme, published last month. In a nutshell, they basically re-reduce lyme to a very easily diagnosable and treatable illness, calling for even more strict guidelines for its diagnosis than now exist. They sanction a small range of blood tests and thus totally nullify the role for clinical diagnosis, which even the CDC had acknowledged as vital in times past.

Unsurprisingly this has thrown the chronic lyme community in a total tizzy and they have not taken this sitting down. A petition has been launched and protests have been planned. And amid the controversy, politicians have already heard the call to arms. In the state where lyme is a famous entity for it was first discovered there, Connecticut, its Attorney General is calling for an “anti-trust” investigation into the Infectious Diseases Society of America, in essence for using their clout and prestige to legitimate a gold standard in diagnosis and treatment, when it seems far from obvious that this should be the standard. According to the LDA press release:

“The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines”

What I find so interesting is that this latest chapter in the grungy and torrid politics of lyme encapsulates the very nature of the politics of lyme, which really is about the “agency of bacteria” and in the Latourian sense. If Pasteur had to put a lot of effort into making credible the bacteriological model of disease as Brunto Latour covers in The Pasteurization of France and if there was plenty of future prostelyzing needed to bring credibility to the bacteria to more general publics, as Nancy Tomes illustrates in The Gospel of Germs, well now, I think we are in an era where we think we have such intimacy with the biological ins and outs of bacteria, it is almost impossible for the scientific community to imagine bacteria as such complex organisms that they can be in fact very difficult to diagnose, eradicate and treat. It is just no longer part of the basic conceptual universe of most doctors and medical researchers to think of bacteria in this way.

The LDA press release acknowledges this very fact in the following way:

“The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics.”

For many lyme researchers and doctors, since lyme is a bacteria and we know how to treat those pesky critters, it is frivolous to even imagine or contemplate otherwise. I would call this a hubris that arises not from the arrogance of doctors and the medical establishment but following the heels of success that medicine has indeed had with conquering the bacteria with antibiotics. Even new forms of poweful and highly resistanant TB are still treatable with a potent cocktail.

That is, at a cultural level, I understand the blinders. At a political level, however, because people are suffering and because it is plausible that lyme can exist chronically, it is imperative to unseat this cultural comfort borne from past success to get the ball of research rolling anew.

I think bacteria (and parasites for that matter as a recent smattering of articles demonstrate) are a lot more savvy creatures that should be treated as novel, wondorous creatures, once again. I would dare say the medical establishment, by refocusing energies on that which they think they have solved, would find themselves quite surprised.

updateHere is an article discussing the issues.

November 12, 2006


Category: Academic,patient_activism,Politics,Tech — Biella @ 12:29 pm

While anyone who has had a

1) medical condition and 2) access to Internet in the last five years

probably knows that patients are increasingly using the net (and now google) to diagnose medical conditions, it is only now that the “medial establishment” is starting to recognize or really admit to the reality of this widespread phenomenon and even doing studies on them, such as the one released a few days ago by the BJP Googling for a diagnosis—use of Google as a diagnostic aid: internet
based study
. The study sought to ascertain how effective google was as an aid in medical diagnosis. As various new outfits are reporting it is moderately high.

What I love about this study and the corollary reporting is the naive tone they have to assume, transmitting the news as if the public knew very little about this, and would in fact, be induced into surprise!!!!!!!!!! when first facing the new. But in fact, I think it works in the opposite way. The surprise is that they took so long to admit to what was in front of us for many years now.

While the news articles reporting on the study stay within the province of doctors, the report acknowledges, in fact opens with, the fact that patients may be forging the path in Internet-diagnosis. The authors write in their second paragraph:

“It seems that patients use Google to diagnose their own medical disorders too. After evaluating a 16 year old water polo player who presented with acute subclavain vein thrombosis, one of us (HT) started to explain that the cuase of the thrombosis was uncertain when the patients father blurted out “But of course, he has paget-von Schrotter symdnome. Having previously googled the symptoms, he gave us a mini-tutorial.. and the correct treatment for the syndrome. This experience led us to ask “How googe is google in helping doctors to reach the right diagnosis”

Again, what I love about the tone of this opening is that it is as if these doctors stumbled on a great but deeply hidden fact to make a breath-taking discovery, one that, however, since is it is SO very emergent and thus still not *really* verified by Science, they must proceed with great caution, qualifying with phrasees like “It seems that patients use Google to diagnose their own medical disorders too”. I am sure they and most doctors are personally are not so naďve but since this has been something virtually without no official acknowledgment among professionals and in the journals, the genre of writing just requires it to be framed cautiously.

As fun to read are the comments, for they stretch from moral panic:

“The implication that ‘googling’ be an adjunct to proper medical school training, continuing medical education through courses and reading peer reviewed journals is laughable and bordering on dangerous. I am shocked that this has been published by the BMJ.”

to celebration:

“For the modern dermatologist, the internet is indispensible and google is only the start, and for this reason a desktop computer with high speed internet access is an essential tool for all clinicians. Long live the information superhighway!”

While others muse on the broader emacipatory possibilities

“One can imagine the benefit to young doctor in developing country who now have access to a grand medical library in their hands.”

I am especially interested in this very dynamic because it is one pillar propping my next project on psychiatric survivors, which exceeds the particular topic of challenges to psychiatry in its general focus on medical/patient reconfigurations following from Intent-based activism, self-help, diagnosis, and critique. And for those who think I have made a radical departure from my last project, here is where I see one (of two or three) threads of continuity: for patients are generating an enormous amount of “amateur” knowledge, that I think is not unlike the peer-to-peer production of software hacking, and it is a form labor usually accompanied by a strong critique of expertise and other medical practices.

I am now reading some literature on patient activism, like the issue from the February 2006 in Social Science and Medicine that collects 11 articles on patient organization movements. For those who work on this topic, the collection is worth your while and the editorial introduction by Kyra Landzelius is stellar. It is not only written beautifully (which I think is rare for these openings because it is often a rote, unimaginative regurgitation but this was a pleasure to read) but provides an engrossing overview of some new trends and some of the diverging forms of politics that arise from what is really a motley bunch of organizations and contests in patient and anti-patient activsm.

She opens by defining four spheres that shape and inform the forms of contents that are part and parcel of these patient movements, the four being:

1. Revolutionary feats in technoscientific engineering
2. Restructuring of healthcare systems across industrialized nations
3. A Revised contract between science and the public stemming from a criss of confidence in science
4. An upsurge in the articulation and diversification of health activisms (p. 530)

These four are key but I was shocked that there was no specific inclusion—though it comes out plenty in the introduction in other ways—of the Internet. For while I am no techno-determinist, the Internet I think, can’t be ignored for it has fundamentally changed the map and tenor of patient activism, allowing for more rapid connections between various stakeholders, providing a medium by which those officially unrecognized illnesses are given shape and form, and where an ethical cultivation of self-help, self-diagnosis, self-medication, along with copious critique and forging of alternatives is happening, right before our eyes, virtually in real time.

It is the medium by which a new chapter of patient activism is being written and I think it is a real mistake not to give it serious attention and credit. And perhaps one of the most interesting things about it is that it without it, it would leave many otherwise home-bound, sick folks, without a medium by which to engage in political activity or even community self-help, for let’s face it, these take a lot time and energy.

When you are sick and home-bound, for example, there may be a limited number of types of engagements you literally have the energy to partiicpate in and the Internet lowers the barrier of political entry because of its ease and because you can still type away, even when feeling otherwise totally awful… This may be a brute material point but nonetheless, key to understanding the political power of the Internet.

Now of course the question left is will Google capitalize on this and create “Google Diagnosis”?