Staying at a friend's house; in the morning, D, a 3 and a half year old person who addressed me while wearing her princess dress, noted that I was wearing my jammies. "Yes," I said, "They're my jammies, and I also go to work in them."
Pause. Look of trying to figure out whether I am scamming her, followed by optimism that in fact I am being serious and that there are people who go to work in their jammies. I call Ms Hemodynamics who is with R and G, all of whom also go to work in their jammies. It's pretty amazing, when you think about it, that we all go to work in our jammies.
Sunday, April 29, 2007
Staying at a friend's house; in the morning, D, a 3 and a half year old person who addressed me while wearing her princess dress, noted that I was wearing my jammies. "Yes," I said, "They're my jammies, and I also go to work in them."
Friday, April 27, 2007
Excellent BBC online article
Our local news
Bad behavior, even compared to other companies, is not new for Abbott
Wall Street Journal investigation of internal documents on Norvir pricing tactics
GMHC article from 2004 detailing Abbott's tactics with ritonavir (Norvir)
AIDSmeds.com article detailing WSJ findings on Abbott internal strategies
...to be updated.
You know what I love?
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
Thursday, April 26, 2007
Photo: Treatment Action Campaign and Student Global AIDS Campaign protesters at last year's International AIDS Conference, part of a coalition opposing Abbott Laboratories' approach to access to AIDS drugs.
I'm going to be taking part in a global day of action to condemn Abbott Laboratories for their attempt to block compulsory licensing of one of their AIDS drugs, known in the United States as Kaletra. This is an important medicine for people with AIDS, and Thailand wants to produce generic versions of it for impoverished people living with HIV and AIDS, who could not otherwise afford it.
The Bangkok Post has an editorial which lays out the legal issue from a Thai point of view. This one is pretty stark: Abbott is deliberately trying to roll back agreements about international trade rules, because the company doesn't like them.
There's more to say about Abbott, but I'll save that for now. In the meantime, I am now wrestling with a less important problem familiar to all 4 or 5 regular Hemodynamics readers, and a problem that afflicts all casual activists who only attend protests now and then: what to wear.
On its face, this is a silly thing to spend much time worrying over. But protests in the television age, and even more so in the digital image age, require careful attention to symbolism. And it turns out that as a future doctor I've got a lot of symbolism to think carefully about.
Medical students have often worn white coats to protests, as have doctors. This is a way of bringing professional credibility as a form of solidarity. But I've never done this, and though I thought about it earlier this evening, I don't think I will this time either.
This particular issue is fairly clear: when people don't get medicines to treat HIV, they often die of AIDS. Incredibly enough, and despite everything bad you can say about an organization like the World Trade Organization, nations around the world have agreed on ways that countries can make sure people get medicines. If you want to reap the benefits of global capitalism you should at least play by its very limited rules.
This message does not require a white coat for its credibility.
To say that you should listen to my views about intellectual property policy because I'm going to be a doctor would be absurd. After all, so many other doctors have been so egregiously wrong about this kind of issue that I would hate to encourage people to listen to doctors about patent policy. As far as the embroidery on my white coat, it says "Harvard Medical School" and it doesn't say my name. And I don't believe there's anything about my Harvard Medical School education that makes me any more equipped than any other reasonably well-informed person to express my opinion about Abbott's approach to intellectual property. All I know now that I didn't know before is the details of how people die from lack of medicines, and what happens to their various organ systems as they get more ill.
You could argue that wearing the white coat is a kind of threat to Abbott, along the lines of the anti-Abbott coalition's suggestions for doctors that they prescribe equivalent generics instead of Abbott products, refuse to talk to Abbott drug reps, and refuse to accept gifts from Abbott reps. But for me, this would not be sending the right message: whether or not Abbott cares about Thai people living with HIV and AIDS, I will prescribe generics when I can, I won't talk to drug reps, and I won't accept gifts. If I was the kind of doctor who was actually thoughtlessly prescribing unneeded overpriced brand name drugs and getting chummy with drug reps, I probably wouldn't be going to a protest at Abbott headquarters anyway.
Another entirely opposite direction would be the Treatment Action Campaign's "HIV Positive" t-shirt. But I've always felt that this shirt has a different meaning in the United States than it does in South Africa, and it definitely means something different when worn by groups of people which do not include many people living with HIV. In the US, the meaning of this shirt can be helpful but it can also be presumptuous; tomorrow, at least, I'm not taking this approach.
The only visual signal I might feel comfortable displaying is letting people know that I am a health worker--someone who makes it their life's work to care about the well-being of people who are sick. I'm uncertain about the political value of that gesture, but I think that at least it is a visual reminder that the protest is an issue of health, and survival, and not just an issue of market rules.
In other words, I've reduced my protest wardrobe to two alternatives: I can either dress as just me, a concerned citizen--or I can dress as a health worker. Considering the health worker option, I realized once again that if I take this route, I would not wear the clothes of the profession (the white coat), but of the hospital and all who work on its clinical floors: I would wear scrubs.
Wednesday, April 18, 2007
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.
Monday, April 16, 2007
The Sopranos is a show about the frailty of mafiosi; because of this, it's a show about the power of medicine.
Tony Soprano's sessions with his psychiatrist frame the show by showing Tony's psychological frailty; in fact, the whole show started with Tony going to the psychiatrist because of panic attacks.
After a long struggle, Tony has basically given in to the psychotherapeutic approach to his own narrative. This week, Dr. Melfi asked, "Are you sure you aren't reading too much into this?" Tony replies, "I been comin' here for years. I know too much about the subconscious now."
Another running theme of the show has been the top bosses getting knocked down not by their enemies, but by their own physical frailty.
This week, New York boss Johnny Sack got bad news about his lung cancer, first from a specialist he flew to see, and then from a fellow inmate working as a hospital orderly. The orderly had been an oncologist, specializing in liver cancer, before shooting his wife and two others. "You saw Cohen?" the oncologist-orderly asks Sacks, flipping through Sack's chart when the prison doctor isn't looking. Sacks asks, you know him?
"I saw him talk once at an ASCO meeting." (That's American Society of Clinical Oncology to you, bub.)
The oncologist-turned-orderly is film director Sydney Pollack, who looks and acts exactly right for the role. I've seen a dozen internists who look and talk just like this guy. (Tony's psychiatrist's psychiatrist is played by film director Peter Bogdanovich, who does look like a psychiatrist.)
First Pollack's oncologist character tells Johnny Sack he should live longer than Dr Cohen has told him. Then, as the disease progresses, he says, "The aggressiveness. It surprises me. I've gotta concur with Cohen."
Johnny Sacks has brain metastases ("The headaches", he says, when Cohen tells him, recognizing the correlation of disease progression and symptoms); Phil Leotardo is still melancholy after his 5-vessel CABG; Tony had his long stay in the ICU.
And Paulie is super-proud of himself for "beating" prostate cancer. He thinks he's a badass for that; when Paulie proudly contrasts his survival to the death of Johnny Sacks, he thinks he's comparing like and like. Actually, comparing localized prostate cancer to metastatic lung cancer is like comparing Paulie Walnuts to Johnny Sack, seriousness-wise. (Though metastatic prostate cancer can be terribly painful and frighteningly lethal, localized prostate cancer is extremely common among older men, and more people die with it than of it.)
The feds make their mark from time to time, but they're mainly annoyances. On The Sopranos, the only people who are always more powerful than the mob–even in prison, there's an oncologist who tells Johnny Sack he's going to die–are doctors.
It makes sense. Doctors are probably the only people who can illuminate a mobster's deep psychological and physical frailty, and still have the mobster thank them for it. That's why a show that is about the frailty of mobsters needs doctors.
Postscript: I was struck by how Leroy Sievers, who's blogging about his cancer on NPR.org, saw this episode differently. He was struck by the episode (and a little bothered by it, despite his wishes not to be) because Johnny Sack's course was so realistic. I was impressed by that too, but I didn't think about it much. It just made sense. If they're going to show the underlings being shot to death, why not show the bosses die of cancer with the same realism? But the fact that the cancer part didn't bother me (while the gunshots still make me wince) probably just confirms that I've spent a lot of time in the hospital, and on oncology floors specifically. Johnny Sack's death seemed ordinary to me. I'm sure that's different from how I would have seen this three years ago.
Saturday, April 14, 2007
Providence, Rhode Island, is famous for many things. Paradoxically, one of its most important cultural contributions is called "The New York System". Present-day proponents of the New York System have been able to find no actual historical connection to New York.
One of the most well-known denominations of the New York System is the Olneyville New York System, a two-diner chain. As their website demonstrates, they make the New York System open-source in order to sell its proprietary New York System spicy sauce in their diners and at Shaw's supermarkets around Rhode Island. Their description of how to implement the New York System is detailed and informative. In brief, the New York System involves wieners cut from chains of links (hence they have their ends chopped off and do not look like ballpark franks); put in hot dog buns; and covered in spicy ground beef and onions and mustard. If you order enough at one time, the preparer lines the wieners in buns up his arm and plops the toppings quickly down the arm, hitting each wiener in succession.
(This maneuver is rumored to be the source of Rhode Island School of Design alum and former Original New York System employee David Byrne's mysterious chopping dance for the Talking Heads' song "Once in a Lifetime", seen in this video where he makes chopping motions up his arm at 3:56, and in many other performances of this song, as he shouts "Same as it ever was! Same as it ever was!" Please note that this original post mistakenly said that Mr. Byrne worked at Olneyville New York System. This is incorrect. He worked at the rival Original New York System. Hemodynamics apologizes for the error. Please see this Boston Globe article for a more complete account.)
The Olneyville New York System also offers coffee milk, which is milk with sweet coffee syrup, like chocolate milk, but it's not chocolate. It's coffee. Coffee milk.
Long-time residents of Providence no doubt take these wonders of American regional cuisine for granted, but Ms. Hemodynamics and I did not. ONYS is an old-style diner with a long counter and little waist-high booths throughout. An especially large and friendly man greeted us and took our orders, talked to us about Boston, and made us feel welcome. (Although after I admitted that I had not previously partaken of the New York System, he shouted, "We got virgins! Virgins here!" Olneyville New York System does not shy away from schtick.) We started in on our coffee milk and then soon were digging in to our ONYS wieners.
Here are some of the most important things to know about the Olneyville New York System wieners, from a health perspective.
First, we were pleased to see that no acute coronary syndromes were in progress among the patrons, most of whom were men on the older and larger side, who we guessed might be mostly descendants of people from the northern shores of the Mediterranean (let's say Greece, Italy, and add in Portugal even though it's on the other side of the peninsula), and who appeared to be ONYS veterans. This suggests that the ONYS may have mysterious healing powers that counteract the effects of its ingredients. (See below.) Admittedly, perhaps some other aspect of their diet cancels the ONYS out; but perhaps the ONYS sauce has some kind of anti-oxidant ingredient. Further research will be required.
The second lesson was learned by a black woman who came in with her daughter, and immediately looked worried. (If you looked at the clientele, and you were a black woman, you probably would have been at the very least uncertain, although while we were there no one gave any special cause for worry.) Sensing this, I think, the warm counter man took great pains to make the mom and daughter feel welcome. He described the ONYS wiener to them, with enthusiasm. She said, "It's a chili dog." (She was clearly torn: compelled enough by this strange place to see what it was, yet also not wanting to let anyone get one over on her.)
"No, no, it's not a chili dog," he said, with a small, confident smile. "You'll see." We didn't stick around long enough to see her reaction, but we hope she liked it as much as we did.
Later that day, I talked to my friend R. who had called me about planning a trip. I told him about the wieners.
"It's a chili dog," he said.
"No," I said, "It is not a chili dog."
It is not a chili dog.
It is very very tasty, however. It also contains what may have been 1.5 kg of fat, although it was hard to be sure; and this was our third health lesson.
The ONYS wiener is not a heart-healthy meal. Accompanying your ONYS wieners with coffee milk and a plate of fries, as we did, does not help matters.
Although the cardiac effects of ONYS are probably mostly long-term, the gastrointestinal effects are not. About fifteen minutes after completing my ONYS meal, I felt as if my stomach was squeezing down on a rock. I had some acid reflux. The rock stayed in my stomach for hours thereafter. My esophagus burned for hours.
And yet, I wouldn't have traded it.
We were not two bites into our ONYS wieners when Ms Hemodynamics said, "This was worth the trip right here." (She was referring not only to the wiener but the combination of wiener and ambience.)
There was nothing healthy about the ONYS wiener, from a physical standpoint. But the psychological effects were overwhelmingly positive. Sure, there was the fat-triggered dopamine surge. But we also felt happy and cared-for at Olneyville New York System. And we felt proud: after a confusing drive past iron-barred corner stores and many Guatemalan and Salvadoran restaurants ("Have you ever had pupusas?" I asked Ms Hemodynamics, as we looked for ONYS and I started thinking about back-up plans) finding the ONYS suddenly in front of us felt like a victory in itself.
So although the ONYS wiener had immediate and obvious effects on our physical health, it was our mental state that took priority. The ONYS was definitely bad for my heart and my GI tract. But it was good for my soul.
A last note: the host pointed to a gentleman who looked to be in his 70s, and said, "My uncle. 101 years old. My late mother, his sister, said, God forbid if I should go before him, take care of him. And she didn't mean like a nursing home. She meant, TAKE CARE of him, like with a gun. But I didn't do it. So here he is. My uncle. A hundred and one." (He was not 101 years old.)
"What's the secret?" I asked the uncle, who had clearly heard this schtick before, and was digging into his wiener without comment. "Is it the wieners?"
"Absolutely," he said.
Patient-doctor relationships during possible viral outbreak associated with toxic-waste-created-river-monster
I've kept a clip from The Host (Gwoemul) at the top of this blog (and I'll put it back into this post once this post is archived), because it's the best three-way battle of US-military-toxic-waste-created-river-monster vs. Centers for Disease Control vs. ramen-stand-owning-family-on-the-run that you'll see this year.
Or any year.
It's definitely not going to be even 50% as good on DVD, so go see it before it leaves the theater.
And since the clip kept playing whether you wanted it to or not, I've removed it for now... you can get clips and previews at the movie's web site.
Tuesday, April 10, 2007
[Picture from the website of Theodore Gray, who had what looks like a great day with Oliver Sacks.]
Is a doctor a consultant, giving her patients advice about how to select medical interventions (or avoid them) based on her understanding of her patient's values? Or is she something else--something more complicated, and emotional?
I was thinking about this after part of a small discussion/debate with one of my favorite teachers, someone who makes it a big part of her job to be extremely thoughtful about the doctor-patient relationship. In my thesis (which I defended yesterday), I cited Robert Rimer, a person with AIDS who wrote a book called "HIV+: Working The System" in 1993, who describes a doctor as being a consultant to the patient; she was responding to this theme with both agreement and skepticism.
But I was thinking about the conversation later in part because I misunderstood part of one of the questions my teacher was asking in our conversation. In retrospect, I think she was arguing that part of what a doctor is supposed to do is care, not just in the sense of providing medical care, but also building an emotional connection and a sense of emotional investment that both the doctor and the patient feel. I agree that this is an important–and extremely rewarding–part of the doctor's job. But when she said, "You describe this as a very intellectual kind of relationship" I agreed with that too.
I'd like to think that part of how I care for people is to be their expert, to be the dork that works for them, their personal geek. And I'm skeptical about the people who dwell too much on the theme of "humanism in medicine", which I think more often than not is just the latest medical buzz phrase for common decency–and yet another chance to pat ourselves on the back. I think doctors are supposed to be decent human beings who treat their patients with respect and concern, but I don't think that's any special calling or anything unique to medicine. I think it's a basic rule of human interaction in an egalitarian society.
Of course, when we are talking with our doctors about really serious parts of our lives, we need to believe that they care about the content of our conversation. And I admit that there is a unique kind of vulnerability that we have with our doctors. Often we are talking with doctors about our own physical frailty, our mortality, and the private intimacies of bodily sensations, bad smells, and objectionable substances. These are things we go to great lengths to hide under all other circumstances.
And so there is also a special emotional obligation on doctors to honor and attend to that vulnerability. And it's true that this is where the "consultant" metaphor begins to break down a little. This vulnerability, not to mention social class, social convention, and even the architecture of the exam room, all conspire to create a real power difference between patient and doctor that is not quite like a classic consulting relationship.
This is not some corporate CEO calling in some Harvard kid who works for McKinsey, to ask how to improve web site traffic.
The emotional currents that run between doctor and patient make a kind of live wire. Those currents can be exploited on both ends. Doctors get a lot of training (especially informal training, which often reinforces some bad values) on how to prevent getting used and manipulated by people who are walking into the clinic or the hospital with a set of agendas that doctors don't want to serve. Psychiatrists spend a lot of time talking to each other about monitoring their own emotions during sessions as a way of using their own emotional state as a kind of sensor to help them understand what the patient is going through. For instance, if psychiatrists start to feel agitated and confused during a visit, if they can stand back from that sensation for a moment they can recognize what it is about the patient (usually agitation and confusion) that is triggering this feeling.
But most patients walk in without that kind of tool. When the electricity of powerful emotions begins in the exam room, they're caught without gloves on. This sometimes clouds people's thinking and makes it difficult to contrast their own agendas with the doctor's agenda. When this happens, it's not until later, when they've left the exam room and gone home, and the electrical current fades and then shuts off, that they realize that they wanted something different from this visit than the doctor did. In other words, I think sometimes people can sink into the emotional connection they get from the clinic–which can be powerful–and lose the ability to clearly and precisely advocate for themselves.
So when I talk about being a consultant, it is not with the aim of eliminating emotion from the exam room, nor with the aim of failing to care for the patient. But that care has to give some breathing room; it can't be enveloping, or it will suffocate the patient's own power and initiative, or constrain its birth and growth.
Anatole Broyard wrote:
"My ideal doctor would be my Virgil, leading me through my purgatory or inferno, pointing out the sights as we go. He would resemble Oliver Sacks, the neurologist who wrote Awakenings and The Man Who Mistook His Wife for a Hat. I can imagine Dr. Sacks entering my condition, looking around at it from the inside like a benevolent landlord with a tenant, trying to see how he could make the premises more livable for me. He would see the genius of my illness. He would mingle his daemon with mine: we would wrestle with my fate together."
This is a complicated, even jumbled, set of metaphors. But the ideas are useful, and not just because they're about Oliver Sacks. Broyard describes the doctor first as a guide; and then, as a kind of owner of one's own condition, a guide who can not only show you around but help improve the premises.
In this way of describing the doctor, the doctor is important because of his expertise; but also because he employs that expertise with kindness. It's important here to note that Oliver Sacks as a man is actually frankly odd, or so it seems from his lovely book Oaxaca Journal. In the book he takes a tour of Oaxaca with a group of fern aficionados; he is also a quite dedicated fern aficionado. He often sets himself apart from the group, most of whom are paired off in couples. He is clearly the nerd, and the striking thing about this, of course, is that he is the nerd among a group of people who have devoted a considerable amount of their free time to thinking about ferns.
Nonetheless, after a while, he begins to become engaged in some mild running jokes with a couple of his fellow travelers, and to build relationships in a way that seems totally ordinary to me as a reader. (He seems to be thrilled by one of his dorky running jokes, even perhaps by the very idea of a running joke. I have this kind of running joke with various people in my world all the time, as do most of you, dear readers.) And yet by the end of his trip he feels completely happy in a way that he rarely has before.
"I myself may be the only single person here, but I have been single, a singleton, all my life. Yet here this does not matter in the least, either. I have a strong feeling of being one of the group, of belonging, of communal affection–a feeling that is extremely rare in my life, and may be in part a cause of a strange "symptom" that I have had, an odd feeling in the last day or so, which I was hard put to diagnose, and first ascribed to the altitude. It was, I suddenly realized, a feeling of joy, a feeling so unusual I was slow to recognize it. There are many causes for this joyousness, I suspect–the plants, the ruins, the people of Oaxaca–but the sense of this sweet community, belonging, is surely a part of it."
I believe, reading Oliver Sacks, that he must be a good doctor. Clearly Anatole Broyard believed the same thing. And yet if we are to believe his journal it seems to take him completely by surprise to feel a sense of belonging among other human beings, and that only transiently. How can this be if the essence of being a good doctor is human connection?
There are a couple of possible answers. One is that Oliver Sacks is a wonderful writer but a lousy doctor. It's hard to know if this is true, but even harder to believe. Another is that Oliver Sacks feels as if he is not making human connections even when he is. This seems more likely.
Most of all, Oaxaca Journal made me think that Oliver Sacks has a sense of solidarity with his patients in the neurology clinic, in the sense that he is acutely and intuitively aware of the idea of neurodiversity. However it is that his brain works, he is quite aware that it is not like other peoples' brains. And when Temple Grandin described herself as "an anthropologist on Mars", and he titled his book of essays with this phrase, it's hard not to wonder whether Sacks himself does not feel sometimes like an anthropologist on Mars, albeit a very kind and enthusiastic anthropologist.
But we know for sure that Oliver Sacks is driven by fascination, by intellectual interest in people and how they think and how they perceive the world. He is able to be fascinated in a kind way, and his fascination is infused by solidarity. And this is what is moving and wonderful about his writing. I think this is also what probably makes him a good doctor, and a good consultant.
He is not taking you out of hell, though if he can walk you towards the door out, he will. He is showing you around, and explaining what is going on there, and working with you to see if things can be better if this turns out to be where you are going to have to live. Anatole Broyard and I read Oliver Sacks and see this in him, and we think that this seems like what a doctor is supposed to be.
I hope to do the same for my patients: to be kindly fascinated, to feel a sense of solidarity with them, and help show them around. Is this caring? Sort of; in fact, it can even feel like a kind of love. But not exactly. It is not a parental or even a fraternal kind of love; it is not even friendship, really.
When we are ill, and live in fogs of pain or nausea or fear of death, it is the people who love us who should love us, and hold us, and remind us of what is good about the fact that we lived on this world and breathed its air. Doctors can do this in a pinch; but so too can many other people. Most people think their nurses are actually better at it.
So what's the point of a doctor? What's the doctor supposed to be? The answer is somewhere in this area of metaphors, of consultants and guides. The point of the doctor is to illuminate the inner landscape and history of our own bodies, to show us around when it becomes confusing, to suggest a way out when we get lost, or a way to get comfortable if we are trapped.
If I did not believe deeply in the value of that expertise, and if I only wanted to be kind and concretely useful to people who were suffering, I would have been a nurse, or perhaps a hospice volunteer. I actually spent a lot of time thinking about this choice, and it was not an easy one for me. But to become a doctor, I needed to accept the idea that I am not first a carer. I am a guide, who cares.
Saturday, April 7, 2007
My classmates have given me a really great honor... I'll be one of two medical student speakers at our graduation.
Each year, there are two medical student speakers. In general, one is humorous and the other is painfully sincere. Because I had to write my speech in order to audition for my classmates, I can already tell you that I'll be taking the painfully sincere spot in the batting order.
Friday, April 6, 2007
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.
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."
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.
Monday, April 2, 2007
This post has been modified since its original posting. See end of post.
When I was choosing a residency, I decided to choose one where HIV care was part of their primary care program, supported by specialists, rather than exclusively part of a specialty clinic. This factor was actually far and away the biggest determinant of my choice, and I think studying the history of AIDS was part of what convinced me of the importance of the distinction.
Over the long run, scientists who worked on antiretrovirals to target HIV's replication were correct in their ultimate goals. It's this strain of HIV research and clinical strategy that gave us Highly Active Antiretroviral Therapy (HAART). And HAART dramatically increased survival times. But for a long time, antiretroviral
drugs were actually accomplishing little other than temporary improvements in immune cell counts.
Until 1996, the biggest gains were made in thinking about how to better prevent and treat opportunistic infections and other problems of HIV and AIDS. Paradoxically, for some time, it was doctors like Joseph Sonnabend and activists like Michael Callen (the picture above is of Callen), who did not believe that HIV caused AIDS, who probably provided some of the best clinical advice for most of the 1980s.
For people who were focused on the virus, it seemed like madness to avoid a drug like AZT when it first came out. It had demonstrated activity against the virus and people who took it often had rises in their CD4 counts (the cell marker that serves as a main indicator of immune health in people living with HIV). But AZT gave people sometimes severe anemia, as well as other problems like sometimes intolerable nausea. That was especially true at the high doses which AZT partisans initially recommended. Worst of all, it turned out that giving AZT alone really didn't give a clear survival advantage. (The debate about how much time it bought for some people, and at what cost, was never really resolved.)
In other words, in the 1980s, people like Sonnabend and Callen were scientifically wrong, but clinically right. And people who emphasized antivirals over all else – pushing high-dose AZT and not attending aggressively enough to opportunistic infections and other issues of immune well-being – were scientifically right, at least in the narrow sense, but clinically wrong.
The people who thought about AIDS research in a hyper-reductionist way did later win big gains for people with AIDS. In fact, they eventually transformed the epidemic. (Sonnabend now presecribes HAART and concedes the point of HIV's importance.)
But in the meantime, until 1996 or so, I think people with AIDS were probably usually served best by clinicians who started from observable clinical problems (opportunistic infections, immune collapse, and the personal issues that made it difficult for people to care for their health) and worked their way in. That was different from clinicians who started with the virus and worked their way out. Starting from observable clinical problems yielded better results than focusing on a theoretical model of the disease and treating the clinical problems as mere signals and stages of that model.
And that's despite the fact that the theoretical model was essentially correct.
At the triumphalist moment of the world AIDS conference in Vancouver in 1996, protease inhibitor maven Dr. David Ho started a presentation with the slide "It's the virus, stupid." This was the picture of a previously-frustrated reductionist slam-dunking his opponents. Ho had actually told Science reporter Jon Cohen that he was making a button with this slogan in 1993, but Vancouver was the moment of victory.
At the Vancouver conference, after a decade of developing antiretroviral drugs with essentially no impact on survival time, the virologists could finally claim the unequivocal success they'd been waiting for. The skeptics of the Callen and Sonnabend school finally had to admit that there was a direct relationship between the virus and the disease. (Denialists of the Duesberg school and its like have never been swayed by evidence, and the mounting evidence that proves them wrong has only made them stronger.)
But if Ho and other virologists were right about the value of targeting the virus from a variety of angles through combination therapy, they were wrong about what the target of AIDS therapy should be.
The point of HIV medicine is not HIV. The point of HIV medicine is people living with HIV.
On first blush that sounds like one of those cloying "humanism in medicine" truisms. But I've started thinking it's worth stating, forcefully.
I thought a lot about this when I was interviewing for a residency spot in internal medicine. I'm planning to be a primary care doctor with an emphasis on HIV. That's a different path than many HIV doctors take these days, particularly in my city, where an academic specialist-driven model is more prominent. (This really varies city-by-city, depending on what powerful people got behind which model.)
I still may end up getting training as an infectious disease specialist just because it will be practical to do so: to get the HIV training, I'll spend a year doing general hospital ID, doing consults on surgical wound infections, even knowing that this part of the specialty has almost nothing to do with HIV care.
There are also year-long HIV fellowships which train especially for HIV care; that's a more likely path for me. HIV medicine is not for the faint-of-heart; it's technically tough and full of insider jargon, so it's worth thinking of it as a specialized area of knowledge. But is that specialized area of medicine really more related to surgical wound infections than it is to heroin addiction, liver failure and vascular disease? I think it's not, and that's why I've chosen to think of HIV medicine, and my training for it, as part of primary care, not as a branch of infectious diseases.
In fact, we might ask: is the virus actually the biggest problem of people with HIV these days? In the United States, the phenomenal success of the HIV reductionists has created its own problems. People with HIV are starting to have cardiovascular and metabolic complications which are often still poorly understood. Some are the result of living for a long time with the virus itself. Others are the result of taking anti-HIV medicines for a long time.
It's not clear how much this will contribute to problems like heart attacks and stroke and diabetes, but a lot of folks think these will be bigger problems for people with HIV in the coming years. Plus, some of the people most at risk for HIV – people of color in poor neighborhoods – are also independently at higher risk for problems like diabetes and vascular disease, as well as other problems like addiction, social disruption and violence.
People with HIV still have all the challenges of taking medicines every day that they've always had. It's difficult for anyone to pull it off, no matter what their social circumstances. Addiction and poverty bring extra barriers. And for immigrants, language and discriminatory health access policies often make taking control of one's own medical care more difficult. The people who are hit hardest by the HIV epidemic in the United States are often people who also have significant problems other than HIV. And no matter how snazzy a doctor gets in prescribing drug combinations to get around the latest resistance mutation, the person living with HIV is the one who has to take the medicine every day.
In other words, many of the toughest challenges for people with HIV are once again challenges that are only indirectly related to the virus itself. These are primary care problems: How do people make their medical regimens a part of their lives? How do people reduce their risk for chronic problems like diabetes? How do you balance the benefit of medicines for one problem, versus the other problems they create? (And for that matter, one might very well ask, how can people with HIV live happy lives that are not entirely dominated by health concerns? but that is another story.)
The fact that infectious disease specialists are often the doctors responsible for HIV care is not inevitable. In fact, at the beginning of the epidemic, many ID doctors shied away from AIDS, as did many academic medical centers. The most academic of academic medical centers often avoided taking on much AIDS care in the early days of the epidemic. Their ID departments focused on other things. Perhaps coincidentally, but probably not, when big money started flowing in for AIDS research, they all started taking the epidemic seriously – hiring researchers and building up more serious clinical programs. But this approach didn't take the agendas of people with HIV as a starting point. It was built around the idea that AIDS was a problem caused by a virus, and that specialists in infectious agents should be the ones who provided HIV care.
There is an important difference in how different doctors think about the goal of HIV care. I think that a primary care model of HIV care is important not just because it's nicer or more medical-humanities-groovy; it's important because it is targeting the issues that are actually most clearly facing people with HIV. How do I live with these medications? How do I keep taking them? how do I live with the side effects? And how do I take care of my health beyond HIV? The success of the antiviral agenda has created a situation where we can generally take it for granted that we can knock down the virus that replicates inside people, but only if the person with the virus is able to commit to the effort to treat it, and only if other things don't kill that person first.
In other words, David Ho was wrong: It's the person, stupid.
Two post-scripts: I should add that even from the basic science point of view, the idea that "it's the virus, stupid" is disputed by HIV researchers who look at AIDS from the immune system's point of view. They point out that immune damage associated with HIV infection is partly caused by the immune response to the virus itself, and that the specific interaction of virus and immune system is more important than simply how much virus is present. See this paper and this erudite old-style medical journal commentary for more from the immunologists.
The second post-script: Looking at retrospective data for survival time it appears that using one antiretroviral like AZT in the late 1980s did not do anything for survival, but using two in people who had not taken one of them before did lengthen survival time somewhat. So, in hindsight, Callen and Sonnabend's particular kind of advice may have been less effective starting at some point in the early-to-mid-1990s, before 1996, when other drugs like AZT came out and could be used in combination with AZT.