I ❤ Pig Thyroid
Things are much better than last time I wrote. Much, much better. There have been ups and downs, and I don’t feel very confident that they will stay better, but for the last couple of weeks my ability to function has felt within the ballpark, at least, of normal.
What has changed? My best guess is pig thyroid. As those of you who have followed this very exciting saga may recall, my real struggles began not with cancer treatment but a thyroidectomy that closely followed. While most people do fine after a thyroidectomy by taking a simple pill, I did not, and in the year-and-a-half since mine, things have mostly ranged between “hanging in there, barely” and “just surviving each day.”
I felt exhausted—the kind of exhausted where you can barely lift a finger as you lie in the bed. I felt a kind of bodily illness that I call “thyroid-y,” which is indescribable but very much physical; the closest I can come is that it feels a bit like being mildly poisoned while also on the edge of nausea. Worst of all, my brain didn’t work—in a way that not only prevented me from being able to do intellectual work or, sometimes, even hold the thread of a conversation, but that felt like an active cloud of noise blocking my consciousness all the time. I experienced this not as an absence—the loss of capacity to do things I once could—but as a terrible presence, an internal sensation that could be more or less intense, but the loudness of which demanded my constant attention.
I did not find the medical community terribly helpful with any of this. The best practitioners sympathetically suggested I try things that helped marginally or not at all; the worst would not acknowledge the reality or intolerability of my experience and implied that this was just how things were now and I should try getting used to it.
As I pursued various options, unsure what combination of illnesses or treatments had caused these symptoms and what might reduce them, trying to get the thyroid medication “right” was a constant thread. Thyroid medication has a narrow therapeutic window; 10% too much or too little will throw you out of range. At the same time, food, drink, and many medications interfere with its absorption. To further complicate things, there is also controversy over whether some patients need T3 (liothyronine), to minimize symptoms in addition to the T4 (levothyroxine, also known as Synthroid) that has been the standard treatment for forty years. (The consensus seems to be shifting toward “yes”—but only in the last few years, and many physicians remain opposed to prescribing T3.)
I tried so many different doses of these medications, alone and together. My levels would go too high, and I’d feel terrible. Then they’d go too low, and I’d feel terrible. Then they’d be normal-but-perhaps-not-optimal, and I’d feel…maybe not quite as terrible, but still not good, and I’d think that maybe changing another smidge, or taking a slightly different proportion of the two, would improve things, but would end up going out of range again and feel worse. And each dose change required a 6-8 week waiting period to evaluate its full effect.
Finally, in December, I asked if I could try “natural thyroid,” or desiccated thyroid extract (DTE). This is a pill made from the ground up thyroids of pigs. It was the standard treatment from the early 20th century, when it was developed, until 1970 or so. It is not favored by the medical community because its strength is less standardized and it contains a non-physiologic ratio of T3:T4 (pig thyroid contains more T3 than humans produce). But there is a vocal, if sometimes quackish, segment of the thyroid patient community that swears by it, and an unresolved debate in the medical community, as well, over whether it might better reduce symptoms for at least a subset of patients.
My first dose of DTE was clearly too low; my TSH shot up to 14 (normal is 0.5 to 4-ish) and I felt terrible. After a dose increase, I felt significantly better for a couple of weeks, then things got worse again; TSH was now about 9. About three weeks ago, I increased another notch, and this has been the best stretch I’ve had in six months. I won’t test for another three weeks, so I don’t know if this is the “final” dose, but I am finally feeling hopeful.
And even more exciting for me, I’m finally able to work—doing not just the bare basics of getting through meetings and emails, but reading and thinking and learning. I have been doing a deep dive into Progressive Era thought and politics, on which more to come, with an eye toward thinking about moments of intellectual transition, in which new frameworks for understanding the social and economic world rise and become naturalized. Most of my research focus has been on a different such transition—the “neoliberal” one—and a lot of people hope that we could be at a similar moment of transition today. So, it is looking further into the past with the explicit intent of being able to better inform the present.
I have also thought about writing a review essay on a new book, Rethinking Hypothyroidism: Why Treatment Must Change and What Patients Can Do, drawing on both my personal experience as well as my sociology of science interests. Written by a former president of the American Thyroid Association, it opens all sorts of interesting about why the standard of care is what it is, and why so little has been done to change it when there are clearly a large number of people—a million in the U.S. would be an extremely conservative estimate—for whom it does not resolve the symptoms of hypothyroidism.
It is possible that things will tank again, and my hopeful plans will fall by the wayside; after a year and a half of up and (mostly) down, I’m hesitant to get my hopes too high. But in the meanwhile, I’m deeply grateful to be feeling…okay. Feeling okay feels really, really good.
My Year in Review
So it’s been a fucking rough couple of months. I limped my way to the end of the semester, sick and foggy. After a couple of not-terrible weeks in December, my symptoms spiked again, and I spent our short break just trying to make it through each day. As the year came to a close, I kept thinking about “years in review” and how to make sense of 2022.
From the outside, 2022 was a very successful year. The book I worked on for a decade was published, to considerable attention. It was reviewed in places I never dreamed of, and by people with real influence in the world. I was invited to participate in dozens of talks, podcasts and the like. It was read in policy circles as well as academic ones. I was promoted, and became director of my program, which gave me a named chair. Pretty much the peak of my career.
In reality, 2022 was mostly hell. My brain never fully recovered after my last surgery in October 2021. I spent a long-awaited sabbatical mostly sick and miserable, going from doctor to doctor. My life was organized around the 6-8 week intervals at which I could try different doses and combinations of thyroid medication, in the hopes that something would help. I canceled at least three talks and two conferences, and got through others in which I desperately hoped no one would ask a hard question about the book I literally just wrote. I ignored travel invitations and requests to chat from fancy people and failed to complete tasks I agreed to. I gradually moved from looking for a solution, to semi-accepting that I’m probably never going to regain the mind and body I had, and trying to figure out what that means for my life.
The chart above encapsulates all this for me. One of the reasons I’ve always been sort of obsessed with numbers in my academic life is that I’ve always been sort of obsessed with numbers, period. I had a sleep chart for my baby before apps existed. The best man at our wedding, in his toast, made an (accurate) joke about my knowing exactly how many steps there were between home and school. This has never risen to the level of clinical significance, but it is definitely a little weird.
So it is not surprising that when awful fogginess persisted for more than a few weeks past surgery, I started tracking it. Now, I have mixed feelings about this. Research has shown, for example, that symptom tracking can worsen chronic pain. But there was a lot of variation in how I felt from day to day, week to week, and month to month, and I wanted to know what was making things better or worse. Plus, it gave me some sense of control over a situation that was very much out of my control.
I used a standard pain scale, but adapted it by replacing “pain” with “symptoms.” So a 7 is “Severe symptoms that dominate your senses and significantly limit your ability to perform normal daily activities or maintain social relationships.” Meaning that while things are a 7, all I can do literally is try to get through the moment and do anything I can to distract from the awful awful feelings. A few times I found myself shaking or hitting my head, in the wild hope that somehow that would clear things up, like when your ears are clogged and you swallow repeatedly to try to get them to “pop”.
Now, to be clear, hitting a 7 doesn’t mean that the whole day was a 7. (Although since the dark line is a weekly moving average, it does mean that during the worst stretches I was hitting a 7 most days.) Often things would start at a 4 or a 5 and then gradually deteriorate, either because the effort to focus on work was making things worse, or for reasons unknown. But let me tell you, even at a 5 or 6 it is pretty fucking hard to teach a class while your brain doesn’t work, all you can think about is how bad your head feels, and you know that you are going to feel worse for hours after as a result of having put in the period of focused effort.
Why am I writing all this? It’s not for sympathy. Honestly, however much this sucks I know lots of people have it worse, and I’m not really interested in being an object of pity. And although I will be glad if it makes someone feel less alone—I know I have gotten a lot of comfort out of others’ accounts of misery—it’s really more selfish than that.
I think I am writing to try to claim the realness of this experience. To somehow document that a largely invisible state (I am pretty sure I rarely read as having the internal experience I am often having) is in fact happening. Because it’s hard not to come out of it disappointed in myself—in my inability to do my job, to live up to my own (admittedly impossibly high) standards, to take advantage of all the opportunities that the book opened up, to live up to my professional commitments, to somehow move a research agenda forward while going through all this. To answer my fucking email. But when I hold those expectations up against this chart, they seem crazy, and it makes it a little easier to forgive myself. And to keep moving forward.
Since the last things I posted were sort of depressing, I feel like I should counterbalance that with something more positive. The last two weeks were extremely rough – lots of 7s and no 3s. But for whatever reason – I have my guesses but really who knows – yesterday and today have been a substantial notch better. I’m back in “foggy but functional” territory.
Of course, in the interim I’ve dropped lots of balls. I am an in-box zero person with 245 emails; I’ve got two overdue reviews, I never submitted a blurb, and I haven’t yet constituted a committee whose work I believe is supposed to be finished in a week. I canceled meetings and ignored many requests, including some pretty fancy ones that probably would have been good to respond to.
And now – assuming things hold – I dig out. The crazy thing about illness/pain/unpleasant human experience is that it’s kind of hard to hold onto once it goes away. It was literally two days ago that I was struggling to answer a simple email because my brain was truly not functioning. And now I’m like, hmm, it doesn’t seem so hard to answer an email today – maybe I should have just been trying harder.
So now I start a process that has unfortunately become familiar – of apologizing, perhaps mentioning something about chronic health issues, and trying to get the balls moving again. As “getting better” has sort of stalled out – even as I remain hopeful that I’ll make more progress – it gets increasingly hard to decide what to say yes to.
I know when I take things on that there is a very real chance I won’t be able to follow through – yet I’m still following through on most things, and simply putting everything on hold because I am intermittently not functional doesn’t really seem like a solution. For big commitments, I can tell people up front. But responding to review requests with “yes, pending my continued functionality” seems like a bit much.
But boy do those obligations add a lot of stress during the less-functional periods. And boy is it hard to deal with the aftermath when they end. For now, I’m just trying to let go of the guilt. I have let some people down, but no babies have died. I don’t believe any careers have been jeopardized. I really really hate not being reliable, I think because I was sort of flaky in my callow youth and worked very hard to overcome that. In the end, though, there are worse sins.
(This post brought to you by being not-quite-ready to face the 245 emails.)
Writing My Way Through
I’m still uncomfortable being so public about this stuff, even with a nameless blog and a locked Twitter account. I certainly am not this open in everyday life.
But it’s helpful for me, and I know is useful to at least some people. And I guess I’m still in the IDGAF phase: I’m doing the best that I can, and until I find a therapist who really clicks, this is the closest thing I’ve got.
Anyway, after an evening spent binge-watching Junior Bake Off (kids baking! somehow even more soothing than the original!), things have notched back to unpleasant but tolerable this morning. I’m in the office and ready to prep class.
Why am I writing, then? I guess I’m trying to work out the practicalities of what being an academic looks like in the face of what may be — I hate to face this — permanent, if also intermittent, cognitive challenges.
The thing is, there are times (last Wednesday!) when I feel like 90% of my old self. There are specific issues that never go away. My short term memory is sort of shot. Sorry, students whose names I don’t remember. But that’s a problem I can compensate for. It doesn’t threaten my underlying identity.
And as long as I feel like my underlying capacities are somehow intact, but buried beneath this fog — as long as I can see them there during the moments when it clears — I have hope that I can do the work that I care about. And I don’t feel like a complete fraud continuing in the job that I have.
But it is a very hard thing to work around. Part of the fog issue is a sort of mental post-exertional malaise. The more mental effort I exert, the foggier I get. And there’s no quick reset; improvement takes hours, or overnight.
There are days when I can exert quite a bit before this becomes a problem, and days where it starts bad and gets worse. But what’s interesting is both how much of my job doesn’t require much mental exertion, and which tasks now “cost” more than they used to.
For example. I currently have an administrative role. This actually is working out surprisingly well so far. Meetings and emails and writing memos are pretty light on the cognitive front. Teaching is more taxing. I’m definitely an introvert, and teaching has always taken an energy toll for me, as it does for many people. But now it takes a brain toll as well, from the 80 minutes of intense focus.
Real writing, as opposed to blog post writing, is unsurprisingly a high-mental-exertion activity. But, it turns out, so is reviewing. If I “waste” my brain energy on reviewing someone else’s paper, I now lose, from my limited quantity of best-brain-function time, both the time it takes to do the review, and the time it takes to recover from doing it. On the flip side, there are many research-associated activities that don’t seem to run down my reserves as quickly as writing, or, alas, reading challenging texts.
Of course I am enormously lucky to have an incredibly flexible job. I can say no to things, and choose to do more of the work that works for me. Will the world be okay if I stop reviewing, and direct my energies elsewhere instead? Yes, it will. But it is not very easy to do in an economy of favors, and there’s no short way to explain that the cost of an activity is just too high to say yes to — at least not without spending down my credit. I guess I’m still struggling to get the mix right.
Just Raging at the Universe
Usually when I post here it’s when things are on an upswing. Some kind of rough episode has happened, but is starting to pass, and I need to digest it and look forward.
Today I’m posting from the bottom, though. I feel like shit and just need to scream into the void.
I still have very little grasp on what makes my periods of brain fog better and worse. Clearly there are basic things that worsen it, like poor sleep or very long days.
But I can be taking perfect care of myself and it still returns. It’s connected to my thyroid levels, somehow, but I don’t think that explains all of it. (Although it didn’t really kick in until my thyroidectomy.) It’s doubtless cancer-related, though I don’t know anyone with this level of debilitation from cancer treatment alone. It will ease for a little while — perhaps a week — then viciously resurge. Over time, I’ve been averaging two bad days to one good day (which does not mean symptom-free), and that ratio is not improving over time. I’m learning to function through it more. But sometimes even that’s not possible.
“Brain fog” is a vague descriptor, and I don’t know if all the people with brain fog from various causes are experiencing the same thing. For me, the light version means feeling a little slowed down, a little off my game. My memory isn’t quite up to speed, my processing time is slower, tasks that should be easy — reading a journal article — are unexpectedly difficult. I can’t keep two things in my head at once. I feel a little unpleasantly spacey.
As it gets worse, it’s less about being “off” or slowed down and more of an actively dominating sensation. It feels like I am observing the world with a giant bell jar over my head that has been smeared with Vaseline. It feels like I’m trying to function after having three or four drinks. It doesn’t matter if I’m trying to think; even if I’m just doing the dishes the sensation is overwhelmingly awful. This piece by Ed Yong — about COVID long haulers, which I am not — comes closer to describing it than anything else I’ve read.
It’s not pain in the physical sense, but I think of it in terms of a 1-10 pain scale: at a 2-3 I can live pretty normally, though it’s never gone, and it still impacts my ability to do cognitive work. At a 4-5 it’s hard to ignore — a constant distraction, although I can get through a pretty normal day as long as it’s not cognitively demanding. And at 6-7 — which is where we are right now — it’s pretty much all I can think about. Sometimes I can numb out a bit with mindless TV. I don’t drink a lot, but drinking also numbs it. Basically I am trying to do things to distract myself from the horrible sensation.
“Fortunately,” most of my life is lived between 2 and 5. The last 6 was in late July. But for whatever reason, after a good ten-day stretch in the second half of September, things started to go downhill and, since yesterday, we’re back at 6.
So I’m yelling into the void. I’m not answering your email. I’m not scheduling a talk, or prepping for class or (imagine) writing a paper. I’m trying to distract myself, because although it sucks all the time, I know it won’t stay at a 6. It will get better. I just have to wait it out.
This has been a very strange couple of months. On the one hand, my book has been more successful than I ever imagined, I was promoted to full professor, and exciting opportunities keep landing in my in-box. Basically, all my professional dreams have come true.
On the other, my capacities are clearly nowhere near where they were two years ago, I spend all my time trying to keep my body and brain more or less functional, and I don’t have a “next project,” because I’ve spent the last two years trying to 1) stay alive, 2) perform the most basic functions of my job, and 3) pursue recovery.
So I’ve been spending a lot of time lately playing the successful academic, promoting the book and responding to requests, while in real life I’m bumbling along more-or-less functional, trying to figure out how to navigate what comes next. (This is the part, I guess, that you’re not supposed to say out loud.) Because I was on sabbatical in the spring, I don’t really know how I’m going to do when a real semester starts.
There are moments when I’m optimistic that with adjustments and flexibility it will all be fine. But there are also times — like when I traveled to a two-day workshop last month, with a tiring cross-country flight and a morning-till-night schedule — when it’s clear that the gap between what I could sustain in the Before Times and what I can do now is large indeed.
At the moment, I’m trying to let go of the pressure — from both internal and external expectations — to have a next “big thing” and focus on just moving forward, however slowly. I am incredibly lucky to have an extremely secure job in an extremely well-resourced institution with a huge amount of flexibility in terms of how I actually spend my time. If I were almost anything but a tenured professor I don’t think I’d still have a job after the last two years.
(As an aside, this is a fairly radicalizing observation — how precarious most people’s lives are in the face of unexpected illness or disability. One of the many things I knew at an intellectual level but that gains a different resonance in the face of experience.)
I am pretty sure I have more to contribute. But it’s very hard to let go of internalized performance expectations — of constant productivity, of always being “on”, of operating at maximum capacity — and move at one’s own pace. And there’s the fear that I won’t be able to contribute, that I won’t even be able to perform the basic functions of my job, that the brain fog means I’ll never do good work again.
But one good thing about life-threatening illness is that it also clarifies what’s important, and what doesn’t really matter in the end. It encourages an IDGAF attitude toward the stuff — other people’s opinions, doing stuff just because you “should” — that is often just a distraction from following your own lodestar. And particularly at a time when democracy is eroding, when rights are being rolled back, when the window to respond to climate change is closing, playing the game of academia for its own sake feels dangerously solipsistic, anyway.
So I will be over here doing my own thing — taking on new challenges but also still testing the waters; hoping for long-term improvement but also coming to terms with the possibility that this may be as good as it gets; trying to live my life and figure out how I can make some positive contribution. Because, I guess, I’m constitutionally incapable of not trying.
The New Normal?
It’s probably good news that I have not been writing here consistently. I’ve been fairly functional since the beginning of April—which is not to say anywhere near “normal,” meaning my pre-cancer state, but able to work and do many cognitively complex tasks. Although it is still unpredictable when the dreaded brain fog is going to hit, there have been long stretches where it’s almost unnoticeable.
I’ve also gotten better at managing and working around the fog—identifying when it’s happening, doing the things that help to reduce it, shifting to tasks that are more feasible when it hits. This is all encouraging and gives me hope that I’ll be able to return to full, or close-to-full, productivity at some point.
That said, there are still major challenges in figuring out how to navigate this new normal. One is dealing with the unpredictability of my body/brain. Things will be basically fine, with only the mildest of symptoms, for a week. Then with no obvious reason the brain will cloud up, many tasks become impossible, and I just have to adapt/wait it out. Which may be for an afternoon, or for days. I’ve learned that I can do more things foggier than I thought I could, but it makes high-stakes, time-specific events (e.g. important talks) very stressful, because I can’t count on thinking clearly at moment X.
It also makes deadlines hard. Like most people, I use deadlines to self-motivate, and also to avoid spending more time on some tasks than I want to—e.g. syllabus-writing or class prep or paper comments. But if you can’t count on being able to use a planned chunk of time to meet a deadline, then you have to do things earlier if you want to be sure they’re done. But if you do them earlier, then you (or at least I) spend more time on them than I would have if there was a deadline. I am sure this is solvable, but I haven’t solved it yet.
Unpredictability makes momentum hard, too. I’ve always been a morning writer—get some time in before the day really gets started. Part of that is about routine: so much of what is challenging about being an academic is finding all the tricks to get yourself to work consistently with few short-term external pressures. But if you can’t count on working during time X, it becomes much harder to establish that momentum where writing becomes an automatic part of the day. So I’ve felt really unable to get into any kind of consistent work groove. Everything feels effortful.
To get to this point of semi-stability, I’ve introduced all sorts of time-consuming, life-constraining practices. I’m super careful about getting enough sleep, about exercise, about meditation (proven cognitive benefits). I’ve eliminated gluten (don’t ask), most alcohol, and am eating super-healthy. I have a therapist, an acupuncturist, not to mention all the traditional medical specialists. I feel like I devote 30% of my time to keeping my body running. Maybe I don’t need to do all the things I’m doing, but I don’t know what’s safe to eliminate. And it still takes very little—a night of poor sleep, or one day of overdoing it at work—to really derail things.
So I guess I’m frustrated. Grateful, when I look back to how I felt in February or March, and hopeful that the generally positive trend will continue. But mostly sick of being hyper-attentive to my body. I know lots of people with chronic conditions live like this, and lots are in much worse shape than I am. But I am still hoping that there will be a day when keeping myself functional feels like less of a constant effort. In the meanwhile, I’m trying to remember, trite as it may be, to enjoy each day.
An Update, and a Book Recommendation
Last time I wrote, about a month ago, things were bottoming out with the brain fog. My notes say things like “consuming, awful…sense-dominating” and “want to tear [my brain] out of my skull.” Good times. Then came a week or so of intense fatigue, where even lifting my arm from my position in bed took enormous effort.
The good news is that things have improved very substantially from that point. Yesterday I ran for thirty minutes, walked for ninety, took a multi-hour trip to Ikea, dragged a whole bunch of furniture upstairs, and then spent several hours making chili. It was fine. The fog has improved, too. It’s no longer something that is like constant pain, always present and asserting itself regardless of what I’m doing. Now, if I’m not doing cognitive tasks, it’s mostly around the edges—an occasional sense of spaciness, or wooziness, almost.
That said, my cognitive capacity has not fully returned. I am still struggling to read complex texts. This kind of writing is okay, but constructing an argument, or synthesizing literature, is hard-to-impossible. I have been trying to revise a thousand-word essay for days. I have trouble following abstract lines of thought, and—I don’t know how to describe this—it’s like my working memory is not great. If something is expressed in a long and complicated way, I lose the first part of the explanation by the time the second part is done. Cognitive overexertion also gives me a sort of mental hangover—like the lingering feeling you get after staring at a screen for eight hours, but now it happens in one.
In the last six weeks I have been throwing everything I can at this—conventional, alternative, lifestyle, dietary. There are lots of things to try. But what it comes down to is that over the last fifteen months I have experienced many things that commonly have cognitive effects—cancer itself, surgery, radiation, chemo, chemically induced menopause, endocrine therapy, thyroidectomy, stress, anxiety—and those effects are probably not coming from one single thing. (Timing still makes me think that thyroid is playing an outsized role, though).
I have learned a ton about what is called cancer-related cognitive impairment, which is extremely common—and not limited to “chemo brain”—yet only recently getting attention. I have learned about hypothyroidism, and the high level of treatment dissatisfaction among patients, despite doctors seeing it as an easy problem to fix. I know more, and I have a strategy for moving forward.
The fact that I was pretty fully cognitively functional for five weeks in December/January—possibly not 100%, but able to do academic writing, which is pretty much what I care about—makes me hopeful that this is not permanent, and I can regain that state with the right combination of chemicals and behaviors. But I also know that steps forward can be followed by steps back, and I’m hesitant to count on my future capacities.
A Book Recommendation
In the very worst period of this block of time, a book arrived that I had forgotten I preordered—The Invisible Kingdom: Reimagining Chronic Illness. I bought it last fall after reading the author, Meghan O’Rourke’s, 2013 essay in the New Yorker, “What’s Wrong with Me?.” Like O’Rourke, I have Hashimoto’s disease, a common autoimmune condition in which your body attacks your thyroid—though her autoimmune issues go well beyond that. But really I just wanted to read more about her experience, and her sharp analysis of the struggle to live in a body that isn’t working for reasons no one understands.
Well, it was the right book at the right time. I consumed it in a day, despite the fog, and felt such a sense of recognition. Because while the book is about her own fight for diagnosis and effective treatment of a set of complex, disabling, autoimmune disorders, it is really about the experience of trying to find a livable solution to a bodily problem that falls through the cracks—of suffering that goes unrecognized, because it’s invisible, unmeasurable, not easily diagnosable, predominantly female, and not under the guise of a single medical specialty.
I don’t feel like writing a full review of the book now, but as I’m working my way back to more complex cognitive tasks I think I’d like to return to it. But for now, let me just recommend it highly to anyone experiencing a chronic ailment that is not well-addressed by the medical establishment—whether that be autoimmune, cancer-related, or something else entirely. Part of the frustration of this sort of condition is the problem of recognition—because internal experience can never be fully shared, and because medicine too often treats “difficult to diagnose” (or treat) as “not real,” or “not important.” O’Rourke’s beautifully written, scientifically informed memoir of her long and painful experience of not being seen ironically made me feel seen indeed.
Where Things Are
It’s been a while since I’ve written. Unfortunately, that’s because things have been worse, not better. After six weeks of being pretty functional, I am now up to five weeks of bad and worsening brain fog. For the last two it’s been pretty incapacitating.
I am on sabbatical, so for a while this was easier to manage than it would have been otherwise; I didn’t have to figure out how to somehow limp my way through classes. But about a week and a half ago things came to a head. I had to cancel a couple of talks at the last minute because I simply couldn’t make sense even of a talk I had already written out. I could read it aloud, but there was no way I was going to be able to answer questions about it.
This was really, really, hard to do. I hate not following through on commitments. But it also made me realize I needed to clear the decks for a little while. With a book coming out, I had a bunch of talks scheduled. So I cancelled a podcast, two more upcoming talks, and a month-long (work) trip to Paris in April.
So the deck is clear for this week, at least. I have an away message on my (alarming backlog of) email. I’m not facing the immediate stress of having to pretend like I can string together coherent thoughts and wondering how obvious it is that I can’t. Or the exhausting effort of working extremely hard to fight through the fog to accomplish very basic tasks.
I’m trying to figure out how to accomplish some limited amount without significantly upping the stress level, which seems to make things worse. And to manage the present without closing too many doors for the future. And, of course, to pursue the medical question of why this is happening and how to make it better. Writing about it is hard when things aren’t great and I don’t really feel like being all that public. But it has also been really helpful in navigating back to reengagement with intellectual life. So I’m testing the waters, as I muddle my way through this dark period.
(P.S. Several folks have reached out to check in, which I appreciate although I have not been great with responding lately. Hopefully, I will reply eventually.)
Pills, Power, Policy Part III
I started reading about the last seventy years of pharmaceutical regulation because I wanted to understand something about how the current system of drug pricing—oriented toward a value-based model in which price is (theoretically) based on the value of the additional (quality of) life the drug provides—came to be.
That led me into what the pharmaceutical industry was like before the current era—up to the 1990s or so. I learned a lot about regulatory debates over drugs in the postwar era, and the (failed) Kefauver-era effort to lower the price of drugs, which set the stage for what would become a repeated pattern of failure.
This is all from Dominique Tobbell’s Pills, Power, and Policy. The final chunk of the book covers the mid-60s to the present, and covers drug company alliances with academic medicine, regulatory reform efforts of the 1970s, and finishes with an epilogue that touches on the Hatch-Waxman (1984) and the Medicare Prescription Drug Act (2003), both of which illustrate how the same politics continued to play out.
The whole book is just terrific if this is up your alley. Here I want to highlight two more things that stood out for me. (Increasingly, I find that I’m reading this through the lens of a potential next project—not about the pharmaceutical industry specifically, but about how our ideas about the appropriate way to govern markets have evolved, of which this is one very interesting case.)
1. The importance of the states. One of the repeated struggles in drug regulation has been over substitution of generics for brand-names: should it be allowed; if so, by whom; and under what conditions. What tipped the balance toward permitting substitution—which for a long time, was not permissible—was state action. Out of concern with Medicare costs, state legislatures started acting on their own, and by 1979 40 states had permitted it.
Similarly, in the 2000s, states started using comparative effectiveness research to create preferred drug lists as a way to control costs—and drove new support for such research effectiveness research at the federal level. I’ve written a lot about policymaking, but little about state-level policy (one exception: state efforts to encourage university-industry research centers).
This is an important reminder of how central states are in setting the rules governing business. It brings to mind other examples: the role played by state attorneys general in shaping antitrust, for instance, or the state-level regulatory competition that helped credit cards take off. As I’m thinking more about “what is this a case of,” I want to keep this in mind.
2. The ACA as turning point—or not. The book focuses mostly on the 1950s to 70s. But it closes with a long and fairly detailed epilogue on the 1980 to 2010 decades. It uses the Hatch-Waxman Act and the Medicare Prescription Drug Act to show continuities in political alignment, even as the healthcare system grows and changes: brand-name drug manufacturers aligned with physicians, especially academic physicians, and against consumer groups and generic drug manufacturers.
Tobbell highlights how these politics were changing by the time the ACA was passed in 2010, just before her book was published. In addition to the growing role of the states, insurers had become a much bigger player in prescription drug politics (where they had historically been less central), patient groups had become more important (though their interests were not always unified), and there was more fracture within the medical community (with academic physicians remaining most aligned with drug companies).
In some ways, the development of the ACA played out in ways not so different from the past. Pharmaceutical companies threw their support behind a version in which they made some concessions, but also got access to many new customers. Most critically, they avoided any government-negotiated prices that could have served as a form of price control.
What is interesting is that while Tobbell paints this moment as one in which the politics of pharmaceutical regulation might be at a turning point (though she certainly is cautious about this possibility), in which more interests might be aligning against pharma, it’s been over the last decade that prices have really exploded. As I learned recently from Laura Halcomb, who is writing a dissertation on the topic, today pharma justifies these essentially unjustifiable prices mainly through the massive patient assistance programs it has created to help those who cannot access five- and six-figure drugs.
I’ve learned a lot from this sporadic exploration; I am not yet sure whether I’m going to return to the question of pricing in the present or to move in another direction. One thing this book reminded me is the extent to which the past is really my wheelhouse. I started exploring this less because I wanted to start a project on the pharmaceutical industry, and more because I was trying to start from a very unpleasant firsthand experience and use it to meander back into engagement with academic research.
What I really got from this book is a reminder that there was a very different way of thinking about the governance of business in the 1950s—one that was gradually denaturalized during the 1960s and 70s—and that I am really drawn to better understanding that “before” and what happened to it, with an eye toward thinking about the present moment, in which our current model of thinking about governing business appears (to me at least) to be a failure, yet it’s not clear what would replace it. Writing through some of these thoughts—which are not necessarily about pharmaceuticals, or healthcare, at all—may be my next step.