How Homophobic is my State?

I've been working on developing measures of heteronormativity for decades. Typically, I end up using legislation / policy because these measures are 1) tightly related to the concept of structural heteronormativity (homophobia at the societal, not individual, level), 2) easy to explain to others, 3) perhaps more importantly, legislation points to a direct method for redressing heteronormativity.

Another approach is to look at public opinion. In some ways, this is a more direct measure of public sentiment about QTBLG people, but it is often difficult to get access to data that is based on a large enough group of people, reported in sufficient detail to make state-level estimates, and uses consistent methodology across enough surveys to make decent state-level estimates.

Here, I present data from the AmericasBarometer that allows state-level estimates of some decent questions for the United States (and many other countries in North, Central, and South America and the Caribbean).

In order to generate these estimates, I combined data collected in multiple waves (2006, 2008, 2010, 2012, 2014 & 2016). There is definitely a time trend towards greater acceptance over this time period, but just to simplify things, I'm ignoring that for now. I have also suppressed estimates for any state based on fewer than 20 respondents (across all 6 waves combined), which means I can't rank Alaska, North Dakota, or Wyoming.

Below are (weighted, but otherwise unadjusted) estimates for three questions asked in the AmericasBarometer survey. As you can see, there is very wide variability across the states, and a decent correlation between the results of the different questions.

D5: And now on a different topic, thinking about homosexuals, how strongly do you approve or disapprove of such people being permitted to run for public office?

¿Con qué firmeza aprueba o desaprueba que los homosexuales puedan postularse para cargos públicos?

Scaled 1-10, with 1=strongly disapprove, 10=strongly approve (asked in all waves)

States ranked by mean score, from least homophobic to most homophobic:

D6: How strongly do you approve or disapprove of same-sex couples having the right to marry?

¿Con qué firmeza aprueba o desaprueba que las parejas del mismo sexo puedan tener el derecho a casarse?

Scaled 1-10, with 1=strongly disapprove, 10=strongly approve (asked in 2010, 2012, 2014 & 2016)

(Data suppressed for District of Columbia, Hawai'i, Idaho, Montana, Rhode Island & Vermont)

 

DIS35a: Now you are going to read a list of several groups of people. Can you check off any groups that you would not want to have as neighbors? Gays. Would you mind having them as neighbors?

Vamos a mostrarle una lista de varios grupos de personas. ¿Podría decirme si hay algunos de ellos que no le gustaría tener como vecinos? Homosexuales. ¿No los quisiera tener de vecinos?

Yes=1, No=0 (asked only in 2012)

Census Household Pulse Survey - Tips for Analyzing Sexual Orientation and Gender Identity

 Hooray! The US Census has finally provided estimates of the sexual and gender minority populations in the United States!

I am in the process of learning how these numbers work, and am eager to pass along what I've learned to other researchers.

As part of the "Household Pulse Survey", a weekly survey of the entire US population designed to gather vital information on the COVID-19 pandemic and related topics, the Census included items on sexual orientation and gender identity starting on week 34. As of this writing, there are 3 weeks of data to work with - a bit over 200,000 respondents, already approaching the sample size of a full year of BRFSS data! (and even more important, not preselected by which state you live in, or whether you are answering an out-of-state cell phone (see my recent article in AJPM for more detail on that)).

Comparability to BRFSS

Many of the questions are identical to those fielded in BRFSS, or can be easily transformed to a comparable format. The sexual orientation item is nearly identical, simply requiring a recode of 5="I don't know" to 7, and -99 to 9.

The sex at birth and gender identity questions are not exactly comparable, however. There are some complications that require a bit of finesse before using the gender identity variables.

The raw data files can be downloaded from: www.census.gov/programs-surveys/household-pulse-survey/datasets.html#phase3.2 .

Tip #1: Restrict to AGENID_BIRTH=2.

For both sexual orientation and gender identity, any analysis should be restricted to cases where AGENID_BIRTH=2. AGENID_BIRTH is a variable indicating whether sex at birth was imputed (1) or not (2). Census used a "hot deck" imputation technique to impute missing values for several key variables, including sex at birth (EGNEID_BIRTH) and current gender identity (GENID_DESCRIBE). When sex at birth or current gender identity are imputed, Census replaces these missing values with values from other respondents, in a (not quite) random fashion. As a result, about half of the respondents randomly assigned male at birth are assigned a current gender identity of female (and vice versa), which would indicate that they are transgender. Because sex at birth is imputed for about 3% of the total population, about 1.5% of people are unintentionally imputed to be transgender when they are in fact cisgender - a common enough occurrence that it overwhelms the population of people who are actually transgender.

The great majority of researchers who don't want to go to all the trouble of performing a full multiple imputation where these variables strongly inform one another (as opposed to being treated as nearly independent as this particular hot deck imputation technique appears to assume), should just take the simple route of restricting the analysis to AGENID_BIRTH=2.

By implication, anyone looking at sexual orientation should probably also make this restriction, especially when also looking at sex (which one should always do when looking at sexual orientation), otherwise you'll get gay men in your lesbian group, and so on. Not as large an error as for gender identity, but why use analytic groups you know are premixed in such a way as to minimize distinctions between the groups?

Tip #2: Use an expansive definition of transgender.

Don't be fooled by the simplicity of the "current gender identity" variable (GENID_DESCRIBE), which looks like it differentiates between people who are transgender and cisgender male or female (and another group "none of these" - I'm holding this group out separately because I haven't yet examined this group in detail).

But GENID_DESCRIBE is about respondent's current gender identity, and many transgender people prefer to identify as "male" or "female" rather than as "transgender". Therefore, to identify transgender people in the Household Pulse Survey, one should also look for people whose sex at birth was male and whose current gender identity is female (and vice versa).

Here is SAS code to accomplish that recode. It puts the results into a format closer to BRFSS (but where there is no "gender non-conforming" option (BRFSS=3), and "none of these" is held out as a separate category (HPS=4, recoded to 5 for convenience).

if AGENID_BIRTH=2 then do;
* Male to Female Transgender ; 
if EGENID_BIRTH=1 and GENID_DESCRIBE in(2,3) then TRNSGNDR=1; 
* Female to Male Transgender ;
else if EGENID_BIRTH=2 and GENID_DESCRIBE in(1,3) then TRNSGNDR=2; 
* Cisgender ;
else if (EGENID_BIRTH=1 and GENID_DESCRIBE in(1,-99))
or (EGENID_BIRTH=2 and GENID_DESCRIBE in(2,-99)) then TRNSGNDR=4;
* None of these ; 
else if GENID_DESCRIBE=4 then TRNSGNDR=5;
end;

In many surveys, this sort of recoding is not recommended, because any slip-up in coding sex at birth or current gender identity is much too likely to result in falsely identifying cisgender respondents as transgender. However, in the Household Pulse Survey (and some other surveys), there is a follow-up question to confirm when people identify as one sex at birth and a different current gender, so this data-cleaning as it happens is probably sufficient protection against miscoding.

Tip #3: Combine waves, but adjust the weights

While each weekly wave of the Household Pulse Survey is a large survey, breaking the numbers down into subpopulations (e.g. by age, state, health status, etc.) can result in some pretty unstable estimates. Combining multiple waves is a great way to combat this instability - but be warned, the weights should to be adjusted to account for the fact that each week's weights are intended to represent the whole US population. The quick and dirty way to do this is simply to divide the weights by the number of waves you are combining. For instance, I started with 3 waves, so my adjusted weights are simply generated as PWEIGHT/3. Eventually, I'll probably do something a bit more sophisticated with adjusting the weights when combining waves, particularly if the sample size starts changing dramatically from one wave to another, or the balance between state-level sampling fractions is fiddled with. I may also want to multiply some sort of "recency bias" into the weights if the outcome is one where up-to-the-minute estimation is more conceptually important (i.e. making more recent observations weigh more than distantly past ones). But all that is in the future. For now, a simple division by the number of waves concatenated is sufficient.

I have also included the "wave" identifier as a stratum in proc surveyfreq. No strong theoretical basis for doing so, but it seemed like a good idea. Very much open to suggestions from others about how to best utilize the stratum and psu specifications.

more to come...

Vaccines. Risk Groups. Scarcity. Efficiency.

Vaccinating the high risk people first is (usually) not the most efficient way to get the greatest number of high risk people vaccinated first.

Sounds like the opposite of a tautology, whatever that is called. Let me break it down.

I'm starting from the premise that we all want to see the highest risk people (especially the oldest among us, and particularly the most vulnerable African American, Latinx & Native elders) protected from the ravages of SARS-CoV-2 infections through vaccination, as fast as possible. So, the question I'm addressing is, what is the fastest, most efficient means to meet that goal?

It may seem obvious that morality dictates that we must get the vaccine to the highest risk people first, to minimize the toll of this terrible pandemic. I agree. But there are some hidden obstacles that thinking about people and populations in term of "risk" that get in the way.

First among these is that there are inefficiencies in identifying "high risk" people, and scheduling them to come to a specific place at a specific time to get vaccinated. In the first few weeks, to maybe a month or two, this inefficiency will not be particularly apparent, so long as the supply of vaccines is a strongly limiting factor. But once the supply of vaccine outstrips our ability to administer them in a heavily calculated risk-first approach (which may already be upon us), it may serve us better to reframe our efforts around getting vaccines out efficiently, rather than focusing as heavily on who "deserves" or "needs" it most. I have to stress that I am still thinking in a social justice frame here - my goal is to get the vaccines to the most vulnerable among us as fast as possible. I understand it may not feel like that yet...

Another hidden obstacle that a risk orientation places before us is that few people like to think of themselves as being "at risk". Ironically enough, putting a lot of emphasis and importance on deciding who is at risk, and who is at highest risk sets up ways of thinking in most people's mind that are contrary to what we've been taught in public health school.

People who are told that they are "at risk" often go through a thought process like: "I'm a good, honest, careful, responsible person. Maybe I've made a mistake here or there, but I'm doing OK, and I'll be OK. Even though they are telling me I'm 'at risk', I know and do things to considerably lower my risk, and therefore there are other people out there who need the vaccine more than I do." It may be hard for public health types to hear this, but even the people you think of as being totally irresponsible and very high risk often have thoughts like that, displacing the stigma of risk even further to the margins of society than they see themselves.

A third hidden obstacle is that this is not the first time these populations have been identified as being "at risk". "At risk" usually means something on the range of unpleasant to bad news. Otherwise, we would call it "privileged" or some such verbal indicator of elevated, but infrequent, status; or maybe "normal", the blandest of accolades. When you've experienced being treated as "at risk", particularly multiple times, you come to learn that "at risk" is literally stigmatizing - elided with stereotypes of being childish, immature or dim-witted (should know better, or poor thing didn't get the right education); untrustworthy (what else are they hiding from me); even dirty. It may come as no surprise then that the very act of identifying particular populations as "at risk" feeds directly into hard-earned insights about prior treatment by healthcare and other parentalist social structures. You may interpret that as being about a "lack of trust in medicine"; I agree, just putting it in a slightly different frame to encourage my public health colleagues to see things from a different perspective. In other words, being part of a "target" population for purposes of healthcare outreach sounds different when you are a target population, in a very literal sense, on the streets of America.

Getting to a solution is even more important than laying out a polemic set of (admittedly) hypothetical concerns. I mean, we have a real-life full-blown health crisis to deal with here, and vaccines are a critical juncture in turning the tide. In my opinion, we need to shift as quickly as practicable (i.e. when the pace of vaccine supply outstrips the pace of getting it into people's arms - a point we have already reached in many states) to mass vaccination strategies. We can still encourage older folks to get to the head of the line, but we need to start getting the vaccines out in a more haphazard fashion than scheduling people and hoping they will show up on time, in the right place. Anecdotally, we are already experiencing the tragedy of tossing out otherwise perfectly good vaccine because only 60-80% of the people scheduled for vaccinations showed up in the right place at the right time, or close enough that they could get processed. We need to shift to older models, like what we did for polio and smallpox. Line 'em up and go go go.

Let history guide us. I will cite four examples where risk-oriented vaccination campaigns were less effective at reaching high risk (and particularly the highest risk) individuals with vaccines than mass vaccination approaches.

Hepatitis B vaccine is a true life-saver. And the most vulnerable population is infants, who can get it from their mother during (and after?) childbirth. Once hep B vaccines became available, CDC bent itself into knots trying to identify mothers at highest risk and getting the vaccine to them. Problem was, the highest risk populations, including Alaska Native mothers, had persistently low vaccination rates, lower than populations with a lower prevalence of hepatitis B infection, and much lower than moderate risk groups like doctors and other healthcare workers, in whom vaccination was nearly universal. How did they fix this? By abandoning the "high risk" approach, and making HBV vaccination routinely recommended for all mothers. This recommendation made it logistically easier to get the vaccine out into clinics (rather than requiring a separate visit, on a particular day, when the vaccine would be available and the correct cold chain could be guaranteed). Vaccination rates grew dramatically higher in the highest risk mothers once the vaccine was simply recommended for all children. I wrote more detail about this story 13 years ago in a post called "New camera & national vaccine strategy".

Human Papillomavirus (HPV) vaccine is now widely adopted, finally. But at first, it was targeted towards girls in their tweens and early teens. The rationale was that the vaccine would prevent against cancer due to infection with the (largely sexually transmitted) HPV virus. And since girls were at risk for the most commonly-caused HPV-related cancer, cervical cancer, it was completely logical to vaccinate girls. Turns out, this made a lot of parents think about their girls having sex. And vaccination uptake was not particularly fast, particularly in adherents to some Protestant communities. So, there was great umbrage taken in public health circles about the ignorance of this way of thinking, with a large investment in trying to think of clever ways to preempt or combat the narratives of these backwards backwoods clowns (or that's how many of us perceived this form of vaccine hesitancy). In a post from 11 years ago "HPV Vaccine for Boys?", I detail how expanding the vaccine recommendation to boys actually got more girls vaccinated.

Influenza, the pandemic that never left. These days, we've heard all kinds of parallels to the great influenza epidemic of 1917/18. While influenza killed unfathomable millions in those years, the death toll in the century since has been absolutely crippling. You probably get a flu shot every year, and still, influenza is a major killer. In part because the vaccines aren't as effective as we'd like them to be, and in great part because a lot of people still see the flu shot as optional, and really only necessary for high risk people (and remember, "high risk" almost always means "someone else", even among the riskiest populations - see above). For years, we put our efforts into identifying the most vulnerable and getting them vaccinated. That actually worked reasonably well in nursing homes, but failed to get high enough rates of vaccination in non-institutional elderly persons to keep the "great scythe of mortality" from reaping a horrific annual harvest. In recent years, the goal has been to get as many adults vaccinated as possible, through as many means as possible, rather than spending a lot of time trying to identify the highest risk adults and making special arrangements to get them vaccinated. While there's still a long way to go, we have been blessed with lower incidence of circulating influenza virus (because more people are vaccinated), and more importantly, higher vaccination rates in the most vulnerable elderly.

Long time, no smallpox. Or polio (in the Americas). The reason I bring up these vaccination campaigns is that they occurred in an earlier era of public health. An era where we weren't tempted to risk stratify the population and reach for the lowest-hanging fruit. We just went all out and vaccinated (nearly) everyone - enough people to reach a "herd immunity" so robust it resulted in eradication. Wait, why didn't we identify the highest risk people and vaccinate where it would be most "efficient"? If history documents a line of progress, we immediately think we weren't sophisticated enough to, or our understanding of the world was impaired. We just got lucky that mass vaccination turns out to have been so successful, but we know better now. Except that we eliminated smallpox and polio using a mass, undifferentiated public health approach. And now, in our more enlightened age, we use more sophisticated, targeted, efficient approaches that fail for years, often decades, to make a substantial dent in the public health problems of our day.

Thanks for bearing with me on this journey. Hope you got something out of it!

Adventures in Cognitive Impairment

Today was a rough day. In a rough week.
I've struggled with fatigue, physically and cognitively, since taking two doses of chemo this summer - one in July, one in August.
Theoretically, I shouldn't have any remaining difficulty.
But I do. And boy, do I.

The Symptoms
1) I make spelling mistakes I never made before. I make the same spelling errors I made before (words with ie or ei always threw me). I amke teh same transposition errors I always made before. And from time to time, my fingers hit the wrpng keys. But now I mis-spell words in ways I never did before - sometimes I put the wrong vowel in - or I leave a letter out completely. And I can't see what's wrong with it, at least not right away.

2) My brain won't let the words out. I've had flashes of aphasia throughout my life. Aphasia (for me anyway) is when you know there's a word, but it won't come to you. You probably know the first letter, or syllable, or your brain picks up another word that sounds similar at first, but the right word, as a whole, refuses to make an appearance. You draw a blank. I'm experiencing something like that now, but quite different. Now, I know the word, but my brain won't let me say it. Like today, I wanted to get a postcard from the museum store. But they moved the store, so I had to ask someone where it was now. I walked up to the ticket taker at the front of the museum and I wanted to ask her where the museum store was, to buy a postcard. I could feel the word "store" rolling around in my brain. But somehow, the word "postcard" kept me from being able to figure out how to actually say "store". I knew I was struggling with saying the words, so when I stood at the counter, I held up my hand in a gesture to indicate I was trying to say something, and ... nothing. So I waited. And waited. And waited for the word "postcard" to stand down so I could finally ask "Where would I find the ... store ... to buy a postcard?"
One interesting thing about the words is that it doesn't seem to affect writing, only speaking. Moments before starting to write this blog piece, I had to fumble around in informal sign language with the guy making my sandwich, because I couldn't speak, at least, not when I needed to. And yet, I think it's arguable that my writing remains lucid.

3) Then there is the thing that bothers me the most - I have trouble moving confidently in the world. I don't have any fear of falling, or a lost sense of balance. It's more like I have to break my motions down and consciously step through the stages. So, again at the museum today, I started walking up a short flight of six stairs. By the time I got to the second stair, I could feel my brain clamping down, so I grabbed the handrail. Hard. And then I had to think through bringing my other foot up from the first stair to meet the pioneering foot on the second stair. Now up to the next stair with one foot. Bring the other foot up to that stair. Stop. Get my bearings. Move my hand up the rail. Repeat. I had to stop and wait at the fourth stair for a few seconds to figure out where I was and how to get where I was going. And once I got to the top of the sixth stair, I moved myself out to the end of the railing, then turned my head first, then my body, towards the next objective, before releasing the rail and starting to walk in that direction.

The Sensations
Of these three, it's the second one - not being able to bring my words into the world - that shocks me. The spelling stuff is a curiosity. These days all my machines try to correct me anyway, and if I mis-spell something in my programming, it doesn't run. But long ago I learned to write code a few lines at a time and test them at every stage, so this doesn't cause any new problems. And as disturbing as the movement impairments are, I can feel it coming on, and I just slow my life down to accommodate.

But when my brain won't let the words out - it often comes as a surprise - and is accompanied by a strong pique of frustration. These days, I often start crying without warning from that »bzzzzt« of frustration. This week, I broke out in tears on Tuesday, Wednesday, Friday, and Saturday - sometimes several times a day. I get frustrated with having my brain seize up. Frustrated with not understanding why my brain works differently now. Frustrated with not knowing what to do to make it better. Frustrated with not knowing my future - is this who I'm going to be for the rest of my life? If so, I can live with it, but it's rough not knowing.

The Science
I'm still pretty new at all this, but I've been eagerly reading about what I may be experiencing and why.
I've had two oncologists tell me that the chemo I had (two doses of carboplatin) couldn't possibly explain my symptoms, and from what I've read so for, I'm inclined to agree. Which is strange. I know that a bunch of new symptoms first appeared when I started the chemo, it was pretty bad while I was taking it, and it got better afterwards. What's even weirder is that, in the past few weeks, they've gotten more prominent, not less. It could be "deconditioning" from the chemo laying me out flat in bed for a month, so that's the practical angle I'm pursuing at the moment.

But here are a few interesting things from the scientific literature: first, a Swedish study did an amazing job to characterize the cognitive impairment that testicular cancer survivors experience. Rather than starting by conducting the standard neuropsych tests, they asked open-ended questions of a few dozen guys who had had testicular cancer and  chemo about their experiences. Then, they drew up a list of a few hundred descriptions from what these men told them, and then asked over a thousand testicular cancer survivors (nearly all the survivors in Sweden) to figure out which were the most frequently endorsed, and which were particularly associated with chemo.
They found that items related to language processing were the most specific to chemo, and that for many of these items, it was an occasional thing, not the sort of constant level of impairment you might expect to identify using the standard neuropsych battery. That rang true to my own experience - most of the time I have no trouble at all. And I can't produce these symptoms "on demand".
But what was interesting to me is that there was really no difference between guys who had taken no chemo at all from those who had taken one to four cycles, it was really only the guys who had taken 5 or more cycles that had higher levels of impairment. And they did the right kind of analysis to show a step up from a basically flat nothing-burger to a jump to a qualitatively different experience among the guys who had taken quite a bit of chemo.

Second, a Danish study did another interesting thing. They used the standard neuropsych testing battery (which is not specific to the kind of symptoms that the Swedish study identified). Like many other studies, found essentially no difference between testicular cancer survivors who had taken chemo from those who had just had surgery. But, when they compared their results to what the standard population norms are for men of the same age, and with the same educational background (both of which affect the performance on these tests), they found that testicular cancer survivors were much more likely to be cognitively impaired on just about every test than they "should" be, regardless of chemo or not.
That tells me that there is something about having the cancer itself that causes cognitive changes. I don't have any idea what that is, let alone how long it lasts, or even whether it continually gets worse with age.
Maybe it is something about the cancer itself. But, why the cancer itself would continue to cause problems years after it was cured is a mystery to me.
Maybe it is something about having surgery. But, the surgery for testicular cancer is no more intense or invasive than a hernia repair, and there must be millions of relatively young men who have had a comparably intense surgery - you'd think if there was an epidemic of surgery-induced cognitive impairment, somebody would have noticed it decades ago.
Maybe it is something about the stress of learning one has cancer at a relatively young age, rather than a direct physiologic effect of the cancer itself or the surgery. Maybe. But there are so many sources of stress that are more traumatic. Like being shot. Or imprisoned. I wonder what people have found out about stressful life-altering events and cognitive impairment - and particularly if it manifests in the peculiar ways I identified for myself, or the Swedes identified in their cohort.

So far, I don't feel like I have anything close to an understanding of what this is all about.

The Search ... Continues
I want to re-read these articles, and as many others as I can find, with a few ideas in mind.
First, what do we know about characterizing the phenomenon (like the Swedish study), and can we do a better job of it.
Second, I want to learn more about the trajectory of cognitive impairment in testicular cancer survivors. The studies I've looked at so far are cross-sectional, I've got one in the bin that follows men over time, including starting with assessments after surgery but before chemo - that should be an interesting read. But I also want to know how does this play out over years - decades - after the initial surgery (with or without chemo or radiation).
Third, I want to see whether the specific cognitive impairments experienced by testicular cancer survivors are similar to those reported by people who have survived other forms of cancer - particularly other forms that are infrequently treated with anything more than surgery. That is, is there something unique about the cognitive impairments associated with testicular cancer?

What John Snow's Pump Handle Portends for Precision Medicine

John Snow (the physician) traced the 1854 London cholera outbreak to the Broad Street water pump, had the pump handle removed, and saved the day. That's the founding narrative of public health we were taught.

Turns out, the story is more complicated. The pump handle was removed long after the threat of cholera passed from that spot, John Snow had a difficult time convincing people of his theory that cholera was spread by invisible particles borne in water, and London was rocked by Cholera many times in the following decades. Yet, we should remember John Snow for being innovative, and identifying a microbial cause for cholera, an accurate description of how the disease is transmitted.

Cholera rocked London until a bunch of people (including William Farr), pursuing the wrong idea about how cholera spread, acted to protect the population at large by digging out the city streets and putting in an effective sewer system. The sewers of London were designed to cultivate a more productive working class by removing the filth that the city's "better classes" were convinced kept much of their workforce sick, caring for others, or dying before their working years had come to an end. At best, they were part right, in identifying filth. But they were very wrong in their thinking that it was harmful ethers emanating from the filth that was the problem.

Today, the US government has committed a huge sum to the Precision Medicine Initiative, with the goal of recruiting a million Americans into a cohort, and measuring our genes, with the promise of providing individualized medical information to improve the delivery of medical care. The promise is that Precision Medicine will deliver us from the hapless poking and prodding of medical practitioners groping in the dark - to a gleaming future where, after reading our genes, a precisely-guided medication will be identified to provide us with maximal benefit. Turns out, the promise of a gleaming future where we will be known completely and our dis-eases will be readily dispatched is as old as medicine itself (see this great Atlantic post by Nathaniel Comfort).
But perhaps this time, medicine, or particularly Precision Medicine, will deliver on the promise. I would argue, that even if it does deliver miraculous rescues of many people from the clutches of truly horrifying diseases, it will likely have little impact on our health as a population, perhaps even diverting our attention from those interventions most likely to have the greatest beneficial impacts.

John Snow correctly identified the causal mechanism behind the transmission of cholera from one person to another. What he did not do (and I would argue could not do) was use that information to effectively prevent the spread of cholera from one person to another. Imagine, if you will, that he had been able to convince the authorities in London of the water-borne nature of cholera, and that it's spread could be interrupted by the timely removal of pump handles. One can imagine setting up an infrastructure to identify cases of cholera (that already existed, though could have been improved), leading to the deployment of a team of investigators to identify the probable source, and in turn remove pump handles in affected areas. Would this have stopped cholera? Yes, within days, by which time it would likely have spread to dozens of other people. And in London, a hub of global trade, the frequent re-introduction of cholera was virtually guaranteed. Not to mention the hardship on the population of having to travel farther and farther to get their water from an ever-diminishing set of functioning pumps, and whether some of those people were now carrying cholera with them to other parts of the city. John Snow and his pump handle removers would be playing whack-a-mole. They would, over the years, improve their methods and whack the cholera-laden pump handles faster and faster. But it wouldn't do anything to stop cholera from cropping up in the first place.
Installing the sewers, on the other hand, (largely) prevented cholera from being transmitted, even when it was re-introduced to the city.

My analogy then, is to whether the knowledge to be gained from the Precision Medicine Initiative (and the knowledge gained will be vast) will have much impact. The first fruits from precision medicine have been in the area of cancer treatment. Some tremendously impressive gains have been made. I imagine it's likely that many more are coming.

But the promoters of precision medicine also hold out more fantastical ideas. For instance: that we will be better able to assess the risk of future disease. That sounds awesome. If I know I'm at increased risk of heart disease, I can take action - I can eat less red meat, more veggies, exercise more, and so on. But a couple of other things also may happen that should be of great concern. The simplest concern is that people "not" at increased risk of heart disease may think they are wasting their time by doing things to prevent heart disease. Why walk laps at the mall and eat like a bird when I could just eat what I like and spare my knees the agony? But everyone is at risk of heart disease, so what's the great advantage in hair-splitting whether we are 30% likely or 70% likely to die from it?
What about finding out I have an elevated risk of an unpreventable health outcome? Is that knowledge worth knowing? In some cases it may be, but frankly, I'd rather not know if I have a higher risk of Parkinson's or Alzheimer's. It's just one more worry in a life full of worries. I'm glad I didn't waste time worrying about testicular cancer before I got it.
And here's a really scary thought - many of the things we do as individuals to prevent disease are ineffective - either we've got the wrong idea about how the disease works, or we have over-estimated the preventive effect of taking action, or we are taking the right action, but 10 years too late. What then are we doing to people by telling them there is a train coming down the tracks at them, then suggesting they totally change their lives, when those changes may or may not pull them off the tracks - or even worse, put them on more dangerous footing.

Individualizing risk individualizes risk
Here I think is the biggest problem, and it's where I come back to John Snow and the individualized approach to prevention. The promise of individualizing our risks - perhaps producing a scorecard with red, orange, yellow and green labels on various potential diseases facing our future selves - this individualization has an insidious impact. It implies that whatever got us to here, we ourselves are responsible for the next step. It localizes prevention to the individual, and as a result, implies we are each responsible in our own way for our health. And re-enforces the notion that others who have befallen ill health may be in some way responsible for it. Especially if we can see that they are lazy, fat, dumb, poorly kept, or even just poor. Sometimes, we just project those qualities upon them. And it takes away from focusing on steps we can take to promote everyone's health. Like sewers. Walkable neighborhoods. Shifting the subsidies for food production that would deliver all of us better options. Fewer handguns. More compassion. More connection.

I can hear some of you shouting that these goals need not be in conflict. I agree, they need not. but I'm arguing that so much of our nation's research budget, and hype about the future, are devoted to diving deeper into our genes, that leaves the rest of us a bit parched.

Me and my Orchid Tumor

The Origin

Back in May, I felt something odd. I was pretty sure it was a tumor, but I also have a touch of hypochondria.

I had felt something odd in the same place a year ago and had it checked out. After a few minutes in the exam room though, the urgent care doc had me convinced not to worry about it. And I didn't.

Until May 18th, when I felt something really and truly odd.

Went back to the same urgent doc. In an even shorter exam, we decided that I needed to get imaging. And fast.

The Work-Up

Within three days, I was being examined by an ultrasound tech. I am grateful she did not remark on what she was seeing. I was fairly certain I had a tumor at that point. I had read enough about it by now to know that a key symptom was the complete absence of pain under circumstances where one should feel it. But, a haze of plausible denial was crucial for getting through the night. And the next day. During these days, I prepared myself, by saying "cancer" out loud a few times.

And I told my boss that bad news might very well be coming. And my parents.

The Diagnosis

I waited for the diagnosis. And waited. I checked my health portal a few times a day. No news. A few days later the urgent care doc called. During a work party. That I was hosting.
He delivered the news quickly. Gracefully. And hung up.

There were to be follow-up appointments to confirm the diagnosis, but this is the moment I knew. I had no doubts, no plausible alternatives to cushion me from the inevitable.

I was wounded, as this photo I took moments after hearing the news shows.

At this point, I didn't feel like the tumor was part of me. And I think that's why I didn't think of myself as "having cancer". I had a tumor, a reminder of my embryonic origins, and I wanted it gone.

The Confirmation

I visited the urologist. She wanted it out too. And on June 14th, she delivered a mass that pathology confirmed was a 4.5 centimeter orchid tumor. It's a boy!

I was relieved. It felt great to have it out. And it felt great to have a singular focus in front of me. I had one job, and only one thing on my mind: recovering from being attacked by a very nice woman with a knife.

My parents drove to Worcester to pick me up after surgery, and I developed a nice routine of sleeping, watching TV, and allowing myself to be doted on in the most beautiful place on Earth.

Looking back, I certainly didn't think of myself as a "cancer patient", or a "cancer survivor". I pretty much just focused on the task in front of me - getting back on my feet.

I wasn't really thinking about whether I had cancer, or had had cancer. Or if I should feel affinity with anyone else who had had cancer.

That, and every step of the process since May 18th, I was being fed bits and pieces of information. It was all I could do to keep up with what I had in front of me. And I needed some spare bandwidth to make jokes about it all along the way as well.

The Search for Information

Towards the end of my stay in Vermont, I began to read up a bit more on the tumor, mainly to satisfy my parents' curiosity. Early on, I had read up on what clinical trials might be available. And when I saw words like "bleomycin", my stomach sank, and I knew I had to just put it away, and work only with what was right in front of me. To make decisions one at a time, without thinking too hard about them, and definitely without looking back.

Now that I was going back in to the literature, I knew I needed to start out slow. With a review article or two. I found the claim that "the 20-year survival is indistinguishble from 100%" very re-assuring, and I repeated it often, to everyone who would hear me. But I was also reading about "surveillance", "recurrence", and "retroperitoneal lymph nodes". And for the first two weeks back at work, I had no patience for it. Instead, I pulled dozens of articles about seminoma and its management, organized them into folders, and read them. And I remembered everything I read. It was astonishing to me how clearly I could recall exactly what each of the authors had said. I knew where each cohort was located, how many people were in each one, and how the results differed slightly. And how the standards of care for surveillance strategies varied from place to place.

So, by the time I met the oncologist, I knew what I wanted to do, and I had the citations in my head to back my decision up. I was well versed in the arguments for and against each strategy.

I wanted no chemo, and no CT scans. Modestly spaced followup scans for the next 5 years.

The Oncologist

She was not down with my decision. She wanted to follow the US guidelines and do a series of over a dozen CT scans that would produce something like a 2-5% chance of inducing a brand-new tumor. I wanted to do something like the approach endorsed in the UK, Spain, and Norway, countries with much larger cohorts with much better follow-up than in the US (or anywhere else). They do many fewer scans, and over a shorter period. And they do it that way because they have found better survival and fewer side effects than the US approach. I even printed out a schedule to discuss with her. She declined to look at it, and kept repeating the guidelines. I was astonished. I was ready to discuss, to argue if necessary, to listen (if essential). But I was not prepared to find out I had a small role to play in my own care decision. I was furious.

She did agree to run my preference past the 'tumor board'. And I thought, who are they to decide? Can I trust my oncologist to fairly represent my concerns when she resisted hearing them? Can I appeal their decision? But decided in the end I had to stick to what's in front of me.

Midlife - Crisis Preempted

Oh, did I mention that I first met my oncologist on my birthday? My 50th birthday?

Which brings me to how I've been travelling through this experience.

I was not shocked by the diagnosis. I've heard almost everyone else diagnosed with cancer say that they couldn't hear anything else. I was a sponge. I couldn't learn enough. I wanted all the reports, all the lab values, all the articles.

I've often noticed that I've experienced many parts of this process like a road trip. I don't really know what's coming. I've heard some stuff from other people about what's on the road ahead, but there's nothing like seeing it for yourself. I find the anticipation of these new experiences thrilling, even when they are unpleasant in many aspects. And I find myself focused on the new-ness, the unusual-ness, and the quirky unexpected moments of these experiences more than on the pain or the uncertainty. Like when I was getting the ultrasound, I started laughing in the middle of it. I was annoyed by the sound the computer made every time the tech saved a picture. Bzzzt. Bzzzt. Bzzzt. Bzzzt. And I thought, why did they make it sound like a long series of errors? Denied. Denied. Denied. They could have programmed any noise. How about: Ding. Ding. Ding. A small thing would make such a big difference in the experience. And so that made me laugh.

Revising the Decision

Anyway, back to the decision about what to do now that I had no tumor, no sign of any tumor, a small likelihood of ever seeing this cancer again, and a life expectancy "indistiguishable" from someone who had never had a tumor. But somehow, I was still a cancer patient. With a big decision about how to "keep an eye" on things that might crop up in the future. I kept reading, and getting more and more details about recurrence rates, risk factors, short and long term side effects of the various options in front of me.

And then the tumor board ruled. My preference was not an option. I had to choose between getting a long series of CT scans with an unacceptably high level of producing a new (and much less treatable) cancer, or I would have to take chemo. The chemo regimen was carboplatin 7xAUC, taken in two doses, three weeks apart. That chemo regime is one of the "light" ones, it has many possible short term side effects, a low risk of long term debility, and a not inconsequential risk of damaging my heart.

It took me less than a second to decide. I went with chemo. She didn't even have a chance to finish the sentence.

Chemo sucks

My first dose of chemo was cool enough. I was back on the road, I had a reason to take myself out of the everyday, and to experience what was happening to my body. I cut my hair short as a ritual to prepare for the chemo. At first, there were no symptoms at all. Over the next few days, I became exquisitely sensitive to sunlight - I got a deep tan in a matter of minutes. I posted updates on social media because I needed to stay in touch. I needed to know for sure people were thinking of me. And I put on a brave face. Thumbs up. But looking back at these photos, I can see I wasn't as upbeat and perky as I felt. I was still able to put in a little bit at work, but that came to a screeching halt with the second dose.

It is painful to look back at this picture. I swear I was genuinely happy when I took it. I had just showered, and although showering and walking back upstairs afterwards had taken every bit of energy out of me, I felt clean, I had fresh sheets, I could feel the love of so many people flowing through me. And yet, look at that face. I thought I was beaming.

I spent most of the month of August in bed. Most of it sleeping. Some TV, some reading, but mostly just laying in bed resting. My folks were terrific. If this scared them, they didn't show it. We had breakfast every morning. And if I was feeling frisky, we would play a few hands of cards. We had dinner every night. And I shouted questions at Alex Trebek.

But honestly, the fatigue was terrible. For weeks, I couldn't do more than walk downstairs, eat, and I'd be gasping for breath by the time I got back upstairs to bed.

When I got back to work, I could only last about 5 minutes in conversation before my mind would clamp down. My eyes would flow with tears because I couldn't get words to show their faces. I'd have to explain that I needed to be alone.
I couldn't do any programming. I made spelling errors I've never made before. Lots and lots of spelling errors. But it's all part of the road trip. I found myself fascinated by what I could and couldn't do, and how long it took for my brain or my lungs to wave the white flag. The spelling errors were telling me about how my memories are organized, my lungs were a governor. Exhaustion is sweet in its way. It is a clear and unmistakable break. It gives one full permission to stop. Stop and experience the familiar world as alien and new.

I've been back teaching for five weeks now. The first two weeks, it was all I could do to show up and mumble through the slides. Someone in my cancer support group suggested methylphenidate, and the requisite professionals agreed. It makes a huge difference, now I'm back to joking with the students, poking the quiet ones, cruising from one side of the room to the other, fielding questions, re-thinking my approach to teaching the basics: person-time. Randomness. Causation.

I've brought the students right along on this journey with me. They've seen me slouching in the chair, exhausted after an hour but still pushing through. But now they see something very much like my old self.

Very much like.

I feel like a counterfactual me. Almost a mirror image, but more of a quantum-entangled actor on the other side, uncannily diverging from what I would have been.

The road stretches out before us.

Let's roll.

Guns Don't Solve Problems. Guns Cause Problems.

    A week has passed since the Orlando Massacre. I've spend most of the time since grieving, seeking the comfort of others, and sharing what comfort I can. In the back of my mind has been a battle over how to "respond". Personally, publicly, politically. I'm still at a loss, but here's one partial, tentative response, among the many swirling in my head.
    So many things got "attached" in one way or another to the profound loss Orlando, the Nation, and beyond experienced: gay blood, the presidential race, violence prevention, overpolicing, I could go on.
    Perhaps the thing that most caught my eye was the idea that somehow now that "the gays" were activated, gun control might stand a chance of moving forward in ways it has been slow to in the wake of so many national tragedies. On one hand, I'm perplexed by the idea, but also inspired by the challenge - we've made such huge progress on the "gay agenda", what can we offer?

Levers of Power and Change
    What can "the gays" offer to gun control efforts? I guess I'd start with a basic breakdown of the levers of power and change in this country thatwe've appealed to at one juncture or another in recent years: the executive, legislative, and judiciary branches of government, the press, entertainment, science, and interpersonal relationships.
    It appears that the judiciary is, for the next 3-5 years anyway, unlikely to be of great assistance. The legislature (Federally) is hamstrung, and likely to remain so at least until the 2018 election, and probably beyond. Although some State and local governments have made heroic efforts in recent years, the porous nature of State boundaries put severe limits on what can be accomplished. The Federal executive has done about as much as it can in the face of strident opposition from the other to branches. The press is a strong advocate, and also a strong impediment. More on that later. Science is unlikely to be of great assistance - the basic work demonstrating that possession of a firearm greatly increases one's own risk of death is already well established. In my experience, science itself rarely moves political change. Narratives do what statistics appear to be incapable of. Coming out has been an incredibly powerful method for invoking change, starting at the most atomistic level of power: family and friendship. But frankly, I'm struggling to think of what the corollary in terms of violence reduction through gun control is.

Changing the Narrative
     I suspect the way to create the greatest momentum now, which can later be leveraged for policy change, is to work on the narrative of how we tell stories about guns. Guns don't solve problems. Guns cause problems.
    But in the movies and video games, guns are frequently portrayed as solving problems, from a distance, without consequence. Now I love me some violent video games and movies (Reservoir Dogs springs to mind), but to the degree that we don't tell an accurate story about how using guns screws everyone up, we're doing a disservice. We should demand that television and film makers don't turn to guns as a plot device to get rid of a problem to allow the protagonist to progress, but rather every use of a gun should endeavor to show how it makes everyone's life, including the shooter's, much more complicated and less comfortable. That would be a more accurate story.
    Narrative moves opinion more than statistics do. With that in mind, a committed, passionate press should tell more stories about the consequences of firearms use, more about the victims, and also more about what happens to those who carry and fire them. Get into the fears that drive people to carry, and to shoot, get into the legal consequenes, sure; and also the long term psychological consequences of what injuring or killing another human causes. Get the stories of people who used to carry and decided not to any longer - give current firearms owners a path out.