Don't walk. Sit.

Above: employees of an Indiana health plan promote "breast cancer awareness" by wearing pink and making themselves into a ribbon. Below: from Rex Wockner at wockner.blogspot.com; the AIDS Coalition to Unleash Power in Chicago. AIDS activists demanded national healthcare, but mostly didn't figure out how to make common cause with other people with other illnesses.


Over at DuncanCross.net, a blog I've just started reading, the pseudonymous Mr. Cross urges us to consider not walking. Not going on breast cancer walks, Crohn's disease walks, polycystic kidney disease walks, etc, etc. Don't walk, he says:

To me, as a sick person, one of the worst aspects of these organizations is their aggressive insistence that the best way to help sick people is by funding for-cure research. That is a lie. Sick people face a lot of challenges, most of which cannot be deferred until a cure is found. If you’re sick, start talking about those challenges as you face them, and try asking for help.

If your concern is a specific person, get more involved in their life; ask them what you, specifically, can do to help them, specifically. For my friends who are sick, I make an effort to be there - to be available, to help them when they need it, maybe cook a meal or drive them to an appointment, but mostly to remain a presence in their lives. Look at the posters and the ads for these organizations: they’re clearly suggesting that sick people can only find community among their fellow-sufferers, as if our only hope to rejoin humanity is via the distant promise of a cure. That, of course, is false - and you can prove it false simply by refusing to be marginalized if you’re sick, or by being a friend to someone who is sick.

I hope you'll consider heading over there to read this essay in full.

One thing that Mr. Cross briefly considers is the origin of all of this walking, and of this marketing strategy. He traces it to breast cancer. My own read is that the breast cancer marketers (as opposed to breast cancer activists) got it from certain parts of the gay community's efforts to respond to AIDS in the 1980s. It seems to me that the Avon-sponsored pink ribbon element of the response to breast cancer must have looked quite closely at AIDS, then tried to find all of the elements of the successful response to AIDS that could be made completely banal.

There are always people in every disease organization who try to defy the vague sense of corporate uplift to have some relationship to the real lived experience of people with the disease. That's because the basic impulse of these organizations--try to work to stop diseases that make people suffer--is a genuinely decent one. But once they start taking sponsorships and decide to stop making tough political choices they will inevitably succumb to banality, because that is what they believe is required to make this kind of fundraising strategy work.

In the case of breast cancer, it is also partly a a story of how the practical innovations of feminism are often appropriated and then depoliticized. Barbara Ehrenreich has a brilliant description of her own reaction to the kitschification of breast cancer in a now-classic essay, Welcome to Cancerland. A brief excerpt of this essay, which merits reading by anyone who has felt a vague discomfort about pink ribbons but has never been able to say exactly why:

It is the very blandness of breast cancer, at least in mainstream perceptions, that makes it an attractive object of corporate charity and a way for companies to brand themselves friends of the middle-aged female market. With breast cancer, "there was no concern that you might actually turn off your audience because of the life style or sexual connotations that AIDS has," Amy Langer, director of the National Alliance of Breast Cancer Organizations, told the New York Times in 1996. 'That gives corporations a certain freedom and a certain relief in supporting the cause." Or as Cindy Pearson, director of the National Women's Health Network, the organizational progeny of the Women's Health Movement, puts it more caustically: "Breast cancer provides a way of doing something for women, without being feminist."

There have actually been plenty of AIDS versions of this kind of strategy--but that is for a longer post than this one.

Seeing the worst excesses of these ways of doing things, one would wonder, as Duncan Cross does, why anyone would want to do disease-specific activism of any kind. In the case of AIDS it was because of the very specific stigma associated with the disease. People with AIDS in the early 1980s died social deaths--people wrote them off as essentially dead before they were biologically dead, and ostracized them--unless they demanded a place both in their own communities and in the larger world. The medical community mostly avoided AIDS whenever it could and often responded poorly when they couldn't avoid it. And most leading researchers were uninterested in the problem; pharmaceutical companies had not yet jumped in because they couldn't see that there was going to be any significant market to be gained out of it. Organizing around their disease identity was built around a very specific and urgent political situation. And the urgency of AIDS activism came not only from the agenda of advocating for people with the disease, but also from trying to defend the communities that were under the threat of so many people dying.

The question is, does that situation exist anymore? Or is there more hope in people with different diagnoses banding together?

The disability rights movement in its modern form did not exist before the late 1960s and early 1970s. The seminal moment in the United States came in 1977 when the various disability organizations--organizations for the blind, the deaf, disabled veterans, and so on--came together to fight for implementation of Section 504 of the Rehabilitation Act of 1974. It was a relatively obscure piece of legislation but it made a huge difference in employment opportunities for people with disabilities, forced school systems to provide real education for a new generation of disabled people, and ultimately led the way to the Americans with Disabilities Act. A dramatic sit-in in San Francisco, including people with all kinds of disabilities, got the legislation passed and created the new face of the new, united, and militant disability rights movement. The movement saw a political opening--Jimmy Carter getting elected--and used it. ( Joseph Shapiro is a fantastic NPR reporter who has made disability his beat: his description of the 504 sit-in is here.) The key element of this movement and its success was the decision by many different disability constituencies to unite.

For people who need change because their own bodily circumstances require assistance from society and from the healthcare system, the history of AIDS activism and the disability rights movement show two things:

1. the credibility of your own circumstances can be a potent political weapon.
2. though that first central tactic can win victories, the largest and most enduring gains are won by tying your own circumstances to those of others.


***

I hope to write more about these two points, but in the meantime, here is an 18-minute documentary about the 504 protests that shows these two points in action. And below, a link to what the folks over at Breast Cancer Action are up to these days: their annual Think Before You Pink effort to end what they describe as "pinkwashing". ThinkBeforeYouPink.Org

The Power of 504:
part 1, followed by part 2

Why I write: props to a zine and a blog

photo: punk zines as depicted by Wikimedia Commons


Blogging is a wierd exercise. A while ago, a noted figure in healthcare blogging came to talk to my hospital; he and I know each other through our blogs and I introduced myself before the talk. During the talk I got a page from a nurse, and had to go out of the room to answer a call about a patient. Apparently in the meantime someone asked the speaker about his blog and he said something about how blogging is partly an inherently narcissistic act, and then looked over in my direction and said, "What do you think Joe?" A friend of mine said, pointing to my empty chair, "Oh, he's not here, he's outside looking at himself in the mirror."

A funny line, but if I liked myself that much, I wouldn't need a blog.

Given that most blogs, including this one, don't have that many readers, and at least in my blog's case, are more commonly found by people stumbling through Google Image searches than by actual devoted readers, blogging can really be only part narcissism. Or maybe it's just narcissism combined with masochism. I don't think either description is right, though. I think all writing requires pure and unproven faith that someone else will be interested in what the writer has to say. And in terms of its relationship to an audience, I think writing is more an exercise in hoping that you're not alone in thinking what you think--that others will read it and relate to it, and maybe even find that it says what they were looking for words to say. Good writing can't spend much time trying to convince readers that the author is fabulous.

Before blogs, there were zines, and I was a fan of zines too. Before some set of people thought it was a good idea to post their writing on the internet, an overlapping set of people thought it was a good idea to type or write a bunch of stuff and take it to some copier and staple it into a little booklet and sell it at some grungy video store or bookstore. I was one of those people too; my writing grew and flourished in my little zine, each issue carefully worked over, slowly, slowly, in between other things.

On that note, two shouts out, one to a blog and another to a zine.

The zine: Doris. Cindy, the author of Doris, has been doing this for a long time, since before blogs. I used to buy her zine when she bound it with red duct tape; now she actually has slightly less DIY-looking binding but she's still got the cut-and-paste, typed and handwritten, no PageMaker punk rock style. She's also doing more writing to support survivors of abuse, including a handbook/comic to support survivors complete with a version in Spanish. She actually now has a blog, but not to replicate the zine's contents--just to let people know about her projects, appearances, etc, from which I find that she's got enough of a fan base to be going on tour to do readings. I think since I've started reading her work she's become a little bit of a celebrity within the punk rock world but since I am mostly part of the hospital world, how would I know? All I know is that every time I manage to find her work I find out that she's been working hard on writing as honestly as possible, struggling but pushing forward. Find her zine in your nearby indie/punk/poetry bookstore or via her website. She also has a book with the contents of some of her earlier zines. Since I started my own medical training years ago, Cindy seems to have at the same time been working on a kind of medical training of her own, but more in the self-empowerment, up-from-the-ground-roots, skeptical-of-medical-power school of thought. I would like to think I was more a part of that world than I am, but my own internal contradictions are the topic of another post. For now I'd just like to give props to Cindy for keeping on keeping on.

The blog: one of my few actual devoted readers who is not my mom is Chris from Last Chance Texaco. Chris can be found entirely on the web, on his own blog, so less description is needed--just go read his stuff. He's still in Boise, still struggling with being in recovery, still trying to make sense of his own role in his own mistakes, still trying not to make the same mistakes again. He also posts about random other stuff, including gym shorts from the 70s, or dumb TV; the periodic light touches make the heavy stuff more compelling. In many ways, Chris's blog is something between writing for other people--he appreciates having readers--and just writing for himself, to mark each day, to mark his struggles, and perhaps to hold himself accountable by documenting those struggles.

Meanwhile, I'm now a junior resident. Apparently that means I'll have more time, and more space in my head that I can call my own. I hope my own writing will benefit, and that you'll be hearing more from me this year. I know that my writing has always been best when I share the impulse of people who write whether or not anyone reads their writing--people like Cindy and Chris who build their audiences through the constant work of documenting their own self-exploration and movement through the world. Though I actually hope to publish more this year in other people's publications or broadcasts--I am at least narcissistic enough to want a broader audience for my writing than Chris, my mom, my honey, and people who do Google Image searches--I want to always remember that my writing is most true and worthwhile when it is written by someone who is a zinester, a blogger, a guy who writes because writing is worth doing.

Links

A little while ago, another blogger tagged me with a meme that I was then supposed to pass on. I didn't have it in me to send on the meme but then I realized that I therefore also hadn't linked to any other bloggers--and therefore had done nothing to support the nebulous but important community of bloggers.

To redeem myself, here are some links, not quite all blogs, and in no particular order, except the first:

1. Amanda of Ballastexistenz takes on the 8 random things in a literal way, much more lovely than my version--8 random things, photographed and explained.

2. In a parallel to my previous post, fellow internal medicine primary care intern/ MICU warrior/ blogger Dr Jess seems to be liking being a doctor too.

3. Just in case Dr Jess and I are warming your heart too much about doctors, though, the ever-scrappy Barbard Ehrenreich recently posted about the consequences of a healthcare system based on the drive for profit--including the tale of a truly terrible doctor.

4. At Acid Reflux, the always witty-and-pretty Miss Retro Virus is on her world tour. The sponsorships on her tour poster are a nice touch, but if that means that Miss Thing is really injecting T-20 (aka Fuzeon) 2x/day in Kigali, I truly salute her. Brian has lots to report in recent dispatches, including moving accounts of a meeting with people living with HIV in Rwanda.

5. If you're hoping that Miss Retro Virus will have a more fabu entry inhibitor soon, or you just want to get your own hands on one, keep tabs via the Treament Action Group's handy guide to antiretrovirals in the testing pipeline.

6. Chris at Methed Up continues to wrestle with how to make sense of his life as an addict, and is now looking back on the days before crystal meth came along. Crystal meth has been beating the fabulousness out of a lot of gay men (and, of course, others); and as a worried spectator when it was just a local West Coast curiosity, it's made me really sad to watch it spread coast to coast. But reading this entry reminds us that waves of new drugs don't hit randomly; they're most likely to hurt the people who had already been struggling--or would have been struggling--with the old ones. Like vodka, for example.

7. In theory, this link to Tundra Medicine Dreams should have something to do with health. In reality, it's for the really great sled dog puppy pictures and story of the retiring sled dog mom, by the rural Alaska physician's assistant who writes this blog.

8. And my longtime buddy from back on the West Coast, Big Sister, who writes about knitting but also has various other things to say (including some great recent travel pics that will make you want to go to Belize and the Alameda County Fair, in that order). In this post she showcases some items from Etsy.com. I then went to Etsy and found a slightly overwhelming amount of cool handmade arts and crafts to choose from.

In brief: Poz blog carnival, internship preparation

1. The International Carnival of Pozitivities was kind enough to include my AIDS vaccine post in its recent round-up of blog posts related to HIV, AIDS, and especially, living with HIV.

2. I went to pick up my Advanced Cardiac Life Support manual from the hospital. Walking back from getting the ACLS manual, I saw a woman and a man walking in the corridor in the opposite direction; the man was in scrubs and was carrying a portable defibrillator. As they passed me, she said, "So, you're going to do the spiel to the new interns, right?" "Yeah," he said. She said, "That's a big one. Like, 200 MDs."

I thought:
--People are preparing for us showing up, and it's a big event.
...and...
--Ha! She said, "MDs!" She meant us! Ha ha ha! ... oh crap! I realized that other people think of us as doctors, more than they distinguish us from other doctors--even when, as in this case, they understand the distinction between us and other doctors. And that means that I won't be just an intern--I'll actually be a doctor also. Of course I know that the two categories of intern and doctor overlap, with intern completely contained within the larger sphere of doctor. But I've been a sub-intern and I can imagine being an intern. Imagining being a doctor seems harder. Even though, as I remember with a combination of delight and dread from time to time, it's actually the same thing.

Hi Fleishman Hillard! Hi! Your client is killing people with AIDS! Thanks for stopping by!

You know what I love?

StatCounter.

You know why I love StatCounter?

Because it told me that someone from Fleishman Hillard, a PR firm that represents Abbott, was doing an internet search with the key words "Abbott Kaletra" and landed on... my dumb blog post about what I was going to wear to the protest, which I'll write about more in the next day or so.

Now, that makes me feel stupid because it would have been nicer if that Fleishman Hillard intern landed on a post that said something like... something like the title of THIS post. Or at least, something that wasn't my little throwaway observations about the semiotics of hospital fashion when protesting. How embarrassing is that?

So, now I've got my post title all set up for tomorrow, which I hope will bring another blog search from the good folks over there at Fleishman Hillard. And maybe, just maybe, a low-level PR employee will take a moment to wonder... is this really the work that represents who I am as a human being? Am I really being the best person I can be today?

Or, more likely, just glance at this and be annoyed that they have to enter the link into some Excel spreadsheet that indexes "Blog Mentions: Positive" "Blog Mentions: Negative" "Blog Mentions: Mixed."

Pic: Abbott CEO Miles White

AAC bloggers have a job waiting for me...

The AIDS Action Committee of Boston now has a blog with updates on policy issues and perspectives on various AIDS and service issues. Recently this post made me feel like my instincts about what people living with HIV are looking for in their medical care are at least headed in the right direction... and this post reminded me that the difference between a thoughtful doctor and a thoughtless one makes a huge difference to some of the folks I hope will be my patients.

What makes me feel good about both of these posts is the feeling that people are writing a job description for me that I'm eager to fill.

The current crisis.

For the last couple of days, various people on Paul Levy's blog have been weighing in about the prospects of primary care, in response to a question from a student about whether he should go into primary care. Mr. Levy is optimistic about the prospects for primary care, and concludes that the student should do what he loves. Other respondents are not so sure about Mr. Levy's optimism, and a lively discussion has ensued.

These debates almost always take for granted that there is a crisis in primary care; the question is just whether we should be optimistic or pessimistic about whether the crisis might be solved. It's important, though, to ask whether there actually is a crisis.

My stepfather was for many years a professor of US History. He would assign an essay topic early in his introductory course: "The current crisis in education." Each year, students could write passionately about the current crisis, often supported by discussion in the media about how the American education system was falling apart and the country was going to hell in a handbasket if we did not do something to reverse this change. There was always truth in the specifics; on the other hand, the fact that he assigned this essay topic for thirty years straight and always got the same response suggested that something else was also going on.

Sometimes we like to assert a unique historical crisis as a way of just expressing our feelings of not liking something. There is a lot not to like about the healthcare system, and about primary care's place in it. On the other hand, many of the most distressing problems are deep structural problems which have existed for decades, and which Americans (and their physicians) have endured for decades. We don't have to believe that there is an imminent collapse to look back and dislike what we've been doing thus far. In fact, what is actually more distressing is that we've lived with some of the same lousy aspects of our healthcare system for so long.

A few years ago there were several articles on one important aspect of this topic: time spent with patients per visit. Each showed that visit length had not declined during the period in which people had begun to become especially alarmed about managed care and what it was doing to all of us. And physician income had not declined despite many protestations to the contrary.

A New England Journal of Medicine article in 2001 reviewed visit data from the late 1980s through the late 1990s, a time period in which managed care had greatly increased its impact on American healthcare. It found that visit length was actually stable. (Admittedly, the number of guidelines telling physicians what they were supposed to accomplish via prevention and counseling during this time may have increased--perhaps contributing to the sense of inadequacy of the time spent.)

An Archives of Internal Medicine paper in 2003 confirmed (using the same data set) that visit lengths had not changed from 1987-1998; further, they showed that except in obstetrics and gynecology, physician incomes had increased relative to inflation during this period.

This just goes to show that what physicians complain about may not be what they are actually unhappy about, although they themselves are unlikely to recognize the discrepancy. It is also not clear that physician dissatisfaction has actually increased much over time. Therefore, physician complaints are likely to be highly unreliable markers of the actual problems we will face as physicians. That physicians are much more dissatisfied may or may not be true; why they are dissatisfied is even harder to say. David Mechanic, who was lead author on one of the studies of visit time, had an interesting editorial on the topic in JAMA in 2003, which I recommend to interested readers (cited below).

If there is one clear problem in primary care, it's probably undersupply of MDs trained in the United States, and that's a problem in part because of what it does to other countries. But this is one problem that the medical profession has refused to fix; instead, we've been perfectly content to import physicians from other countries (which can't really afford to lose them) to fill some of the gaps, rather than increase the number of medical school slots, and students qualified to step into them, in the United States.

Though there is much more to be said about this topic, I will conclude that from all of this, I personally take the lesson: do what you love.

I also would like to add a caveat: having said all of this, I reserve the right to complain about anything and everything related to my work as a primary care physician in the future.


From:
Weeks WB, Wallace AE. Time and money: a retrospective evaluation of the inputs, outputs, efficiency and income of physicians. Archives of Internal Medicine, 2003;163:944-948: the authors conclude:
"...our findings are provocative. They do not confirm the prevailing concern that physicians are working harder or longer, are spending less time with patients, or are experiencing declining incomes. In contrast, they suggest that physicians are maintaining incomes without changing work hours and are able to command higher reimbursement per patient visit than in the past. There is a great deal of dissatisfaction with the health care system among physicians; exploration of perceptual reasons for that dissatisfaction may outline a course of action needed to resolve it."

Also cited:
Mechanic D, McAlpine DD, Rosenthal M. Are patients' office visits with physicians getting shorter? N Engl J Med 2001;344:198-204.

Mechanic D. Physician Discontent: Challenges and Opportunities. JAMA. 2003;290:941-946.