Doctor Who? Doctor Geek!

How our geeky interests may become our geeky careers

I recently wrote a piece on my origins as a physician-writer. In it, I explored how writing allows physicians and other health professionals to understand our patients' stories, our role in caring for them, and ultimately ourselves as physicians overall. But I somewhat ignored the origins of my other half--my doctoring. While I would now say I am a physician (and particularly one who specializes in the treatment of children with infections) because I find the work rewarding, fulfilling, and largely successful, I was not always so clear about my motivation.

As early as elementary school I knew I wanted to be a doctor; and while I may have had an inkling about helping people and an altruistic bent, it certainly wasn't the primary factor—I was just too young to really understand what that even meant. But I knew science was cool. And the body was cool. And diseases were even cooler! And it was all so interesting! No, back then and deep down still today, I became a doctor because I am a geek.

But what does it mean to be a geek? John Siracusa is known in certain internet circles as the consummate geek. He is exceedingly knowledgeable about many subjects; he pursues this knowledge relentlessly and with a thirst for accuracy; and some of his areas of knowledge are a bit...niche (like file systems or the evolution of Mac OS X). John recently wrote a piece on his blog entitled "The Road to Geekdom" that resonated with me and seems particularly relevant here. In it, John explores how one becomes a geek and whether established geeks should exclude newcomers (TL;DR version: no). He also seeks to define a geek.

There are jokes, Venn diagrams, and even joke Venn diagrams, about the definition of a geek, and other similar categories. According to many of these, a geek is somebody with intelligence and obsession, though John Siracusa more politely describes it thus: "A geek must possess just two things: knowledge and enthusiasm."

He says nothing about computers. Nothing about sci-fi, nothing about pens or music or any specific area of interest. Almost anyone can be a geek, as John goes on to say, and there are indeed many, many people who would fit this definition. And if you ask my wife, or any of my family and friends, or even my patients, I definitely do as well.

Like John Siracusa and many others, my defining moment as a geek came at a young age. Like many young kids I loved animals. Around age 5 or 6 my parents got me a subscription to Zoobooks. Every month a new glossy magazine about one particular group of animals would arrive at my door. I was hooked from issue #1 —they taught me that polar bear skin was actually black, and why kit fox ears were huge. But more than that they showed me exactly how and why science, and biology specifically, was completely and utterly cool.

From Zoobooks I moved to books about people — we're just big animals, after all. This fascination with the human body extended most especially to the parts you don't see (get your mind out of the gutter!). I loved the organs, their function, anatomy, diseases—the stuff going on under the surface was the coolest because nobody else knew it was there. Forget playing the game Operation), I watched the TV show.

As I grew older, and learned more, obsession matured to...well, a more measured and appropriate obsession; from picture books to pop-sci and even textbooks. I breezed through high school biology classes and then devoured other books I found or was led to: Vital Dust, Microbe Hunters, and Men Against Death were game changers for me because they showed how this geeky obsession of mine could truly become a sustainable career—both in patient care and in research.

The rest of the story plays out like many others of my peers—work in a microbiology lab in high school, on to college, med school, further training, and now my job. And certainly my success along this path is owed to more than just simple enthusiasm—my parents, teachers, study habits allowed me success in making my geeky love into my geeky life. It also helped immensely that I was lucky enough to find a mate who is equally geeky about the medical field and has similarly made her passion her career. (You do NOT want to be a fly on the wall at dinner time, before bed, or pretty much any other free moment in our house, unless you want to hear nothing but medical stories. We geek out together.)

Not all are so lucky and able to make their career one based in their chosen area of geekdom. John Siracusa, as a programmer, seems to have done so. I was able to do so. And I think many, many more of young people today could do so too if they were properly encouraged. Have a geeky obsession with comics but no artistic talent? Turn it into a career as a comic book writer. That geeky obsession with computers? Well, there's no shortage of paths to a career in engineering or tech. A geeky obsession with history but hate academia? Become a librarian or archivist. The list goes on. Too many times, kids and teens are steered away from what they love into paths that are easy or will earn money, like business or law or a job on the family farm or in the family store. And while some of those may pay dividends financially, if it's not what you are enthusiastic for, it's hard to really be happy in it and more importantly, harder to be really good at it.

Ultimately, while my friends or even my patients may think I'm weird for thinking a disease is cool, it's that enthusiastic awe for it that gets me to stay up late researching treatments. It's my obsessive memorization of antibiotics and their mechanisms and dosing and side effects that mean I can catch medication issues without having to look things up. And I have hundreds of colleagues who think and act exactly the same. A geeky programmer like John Siracusa will likely write better code. I like to think that the geeky doctor that I am may possibly take better care of your child. I'm a doctor in order to help people and I'm a doctor because I'm a medicine geek; but the two may not be so separate after all.

2 out of 3...anyone for a rubella outbreak?

MMR. Measles-Mumps-Rubella. The name of a vaccine that has saved thousands of lives. It is also, to many parents, a highly concerning vaccine--thanks to research by the now-discredited Andrew Wakefield it was believed to cause autism (It doesn't). People then claimed it caused diabetes or asthma (it doesn't). Every claim made by the anti-vaccine lobby has been shot down by science. So you would think everyone should be all vaccinated by more Measles and Mumps, right? Yeah...not really...

Right now, there are 2 outbreaks currently ongoing of Mumps and Measles in New York City (. The Mumps outbreak started among Fordham University students in The Bronx, and the Measles Outbreak is so far in 16 individuals in Northern Manhattan and The Bronx, including 9 children. Both outbreaks are linked to unvaccinated individuals, including people who were "intentionally undervaccinated" as we say n the business. That's vaccine refusers for those playing along at home.

These are fully preventable diseases. The vaccine we have is old--about 50 years--and is safe and effective. There is NO REASON for outbreaks of these diseases to still occur, let alone at an increasing rate in recent years.

For now, the people who need to within the NYC DOHMH are doing their job trying to contain these outbreaks. But we should do our part too--vaccinate our children, encourage vaccination, and make sure we ourselves are up to date on vaccines. Nobody wants a Typhoid, er, Measles Mary.

A Separate Peace - where doctors find meaning

This essay originally appeared in The Magazine—please subscribe!

Shivering in the brisk October air, I stood clutching a small pudding cup, licking the plastic spoon. Standing — no, hiding — on the roof with a friend and colleague, we stared out at the inky midnight darkness of Central Park and the buildings and streetlights of the Upper West Side and beyond, finishing our snack. Chocolate, yum. While this might be how TV networks portray a similar scene, this was not how I imagined my life as a doctor.

At the time, I was a second-year resident in pediatrics at Mount Sinai Kravis Children’s Hospital in New York City, and that night, I was on call in the neonatal intensive care unit (NICU), where premature or otherwise very sick infants come after birth. We had finally confirmed that one of my two-day-old patients had been born with non-functioning kidneys — a condition that is, in doctor-speak, “not compatible with life.” My job was to keep him alive until morning, at which point his parents could come and peacefully hold him and say their goodbyes while we would discontinue life support and he would die in their arms. Keeping a child already marked for death alive knowing the scene you’ll witness in the morning is gut-wrenching; not anyone’s idea of a good or even tolerable experience.

One of my co-residents (I’ll never remember exactly who it was)1 saw me struggling to cope with all of this and took me aside. “Come on, let’s go get pudding.” She led me up to the 8th floor obstetrics postpartum area, to a fridge in the patient and family pantry that was filled with pudding snacks. A chocolate pudding cup and spoon were thrust into my hand, and, ignoring my slack jaw and incredulous face (how could I not have known?! pudding!), I was led up to the roof.

The roof deck on Mount Sinai’s children’s hospital is usually used as a public space for residents to relax or eat lunch. It is hardly a secret space. But that night, with the pudding and the emotional baggage of the day and evening, it felt like our own private corner of the world, our little secret.

There are times it’s helpful to talk and process. This night was not one of them. At that moment, I was just trying to go. Away. Somewhere. Anywhere but that hospital on that night. And the pudding, the roof, the late hour: they all transported me briefly Somewhere Else; away from the hospital and its burdens, its responsibilities. After an indeterminate time that can’t have been more than five minutes, I finished my pudding, went back to the NICU, and finished my shift as I’d been trained to do, dutifully keeping this baby (and about 10 others I was responsible for) alive. We disconnected his ventilator at 9:00 the next morning, just before I left to sleep off the 24-hour shift.

Working in a children’s hospital can be an amazing and wonderful thing. Many times, I’m helping sick or dying children get better. But there are the awful and intolerably sad times when they don’t. At those times, the overwhelming human urge is to just escape, to get out of the hospital. As this is often impossible, we do the next best thing: we go somewhere that we can pretend is not a hospital, where we are not surrounded by death or sickness, at least for a while. Ideally, this is somewhere we won’t be found, or at least won’t be looked for, though it does not necessarily have to be truly secret or exceptional. Rather, these are ordinary places where extraordinary mental gymnastics take place to allow us some reprieve to cleanse our minds and go back to work five minutes after being told we will spend our morning watching a child die.

A view to die for

The first time I discovered one of these spaces was in my fourth year of medical school. I was rotating through the pediatric ICU at Morgan Stanley Children’s Hospital of NewYork-Presbyterian at Columbia University Medical Center, and I was working the same 24-hour shifts as the residents. I had been up all night, bouncing from room to room, patient to patient, no chance to sit or lie down. I was getting the summarized overnight vital signs for the patients on our team when I saw the sun rise. Just peeking over the rooftops of Washington Heights, it had begun to stream in through the floor-to-ceiling picture windows in the parent lounge. I stood there for about 30 seconds, soaking it in, recharging, before I was summoned to rounds.

I went back to that lounge on other mornings, retreating out of the cold and dark that can consume a hospital filled with sick kids and into the light and warmth of the sunrise. I never did see the residents go in there, and no parents ever arrived that early to visit, so I was usually alone, hiding in plain sight. Once I went there after a child had just died, noting the irony of the new day this kid was now missing. Other times it was just a more comforting moment. But it became a routine and it was mine: my first experience with a special place to call my own, in which to escape from the hospital day.

Dr. Josette Bianchi is an assistant professor of clinical pediatrics at Stony Brook University Hospital, in the division of hospital medicine. For her, too, a connection with the outdoors, or a view, is important in a place to escape to. “The stairwells within the children’s hospital where I trained had a gorgeous view of the Nashville skyline,” she recalls. After a bad outcome, she used to stand in the stairwell with a colleague, staring out at this view. Even now, as an attending physician, she says she will often stand in the skybridge between buildings, staring out at the view of Long Island Sound, being transported by it to places beyond.

But not all find such a place early in their training. My wife, Ilana Harwayne-Gidansky, MD, a second-year fellow in pediatric critical care at NewYork-Presbyterian Hospital Komansky Center for Children’s Health, says that she never found such a place in medical school. “We rotated through so many different hospitals, it wasn’t on our radar,” she explains. “As a resident, you’re in one hospital for several years, and the senior residents know you’re there to stay, so I think they feel more comfortable revealing secret places. A lot of these places are passed down by residents.”

That such places are not institutionalized by the hospital but rather by the staff may explain why some find them and others do not. It also makes sense that many physicians have long forged their own ways of coping and sought spots to do so. Hospital administrators have only recently publicly recognized the stress burden that the workload puts upon trainees. For decades, residents and even medical students were expected to essentially live in-house, with few or no restrictions on work hours, no separation of work and home life. Recent changes in work hour restrictions — as well as recent improvements to resident curricula, such as teaching coping strategies and training residents to watch for danger signs in those who aren’t coping — have helped make doctors more cognizant of the need to find better ways to deal with the stress. But they haven’t necessarily changed the places where we do it.

Paging Dr. Call, Dr. Ron Call

One place that most doctors have at their disposal to retreat to is actually institutionalized and provided by the hospital: the call room. Unlike what may be portrayed on Grey’s Anatomy, call rooms are not usually places you go to conduct an illicit affair with a coworker or where someone is beaten up or stabbed. They were originally intended simply to be places for doctors to sleep when they were working an overnight shift in the hospital, on call but also on site, ready to be paged to a patient’s bedside at a moment’s notice. For many, they have become so much more.

For Ilana, a fellow in the pediatric ICU, the high acuity of illness of her patients requires her to stay in the unit. There are no trips to the roof or to a window with a view. Instead, she simply goes to the call room and turns out the lights so she can be alone with her thoughts. I ask her where her thoughts go, what she thinks about. “Nowhere,” she says. “I don’t think about anything. I mean, it’s the silence and the solitude. I go there to stop, to get it to stop.” Even if a patient isn’t dying, the ordinary demands of the hospital day — the pages, the orders, the charts to check — can get to be too much. For her, there is no better place to get away than a dark room with a bed. Or, sometimes, a bathroom.

One of the quirkier yet more poignant moments in my interview with my wife is when she mentions going into the bathroom for relief — not that kind of relief, but rather escape. “There is a bathroom in the call room with a shower stall. This stall is probably the smallest space in the whole ICU, and, with the curtain pulled, the safest.” The safest from what, I ask. “From being found.”

I never escaped to bathrooms. For me, the call rooms, with the bunk beds we sleep on, evoke memories of summer camp. If I close my eyes, I feel like I’m back in the woods of Vermont, surrounded by teenage boys, hooting and laughing.

The one common thread in all of these examples has been a need to get away. But does this change over the professional lifespan? Trainees grow and learn. Single young medical students and residents become attendings, with jobs that need less of their time and attention — and more importantly, households and families of their own.

Home is where the mind is

These days, as an attending done with my training, I don’t as often need a special, secret place to go. I go there every night, even when I’m on call — because now I take that call from my bedroom or living room. I get to see my wife, hug my kids and put them to bed, and truly bring myself away from and outside of the hospital and its mindset. I get to spend more time, physical and mental, at home. On the more rare occasions at work when I need to go Somewhere Else, I go to my office and look at pictures of my son or daughter, or the drawings they made for me.

Josette, who has a daughter, agrees that now she just spends the mental time she would have spent looking at a view or in a call room at home instead. She also has pictures of her family stationed all around her office, so if she has to get away while at work, she has a bit of home with her. Many other attending colleagues of mine agree, and even those without children will decorate their office with photos of their spouse or pet, or with jokes or cartoons. In the same way, they seem to have compartmentalized home as a way to balance the stressors of work.

As we get further along in our careers, we learn new ways of compartmentalizing. The physical spaces, which used to signal a transition to a different mental space, matter less than they once did. Many of us have to find new ways to flip the switch in our heads without being able to pull that shower curtain or close the stairwell door. But it takes time to learn how to do this, and how to rely only on home time as a counterbalance to work time. For trainees, those secret spaces are essential.

As Ilana and I talk about our personal histories with secret spots, she’s visibly more emotional, her voice quavering. “Our jobs are so hard,” she says. “You have to be strong for your patients. Even when you’re scared out of your mind, everybody’s looking to you to lead the team of doctors, the team of nurses, the patients, their families. They expect you to know the answer, even in the scariest of situations. And for me, I needed some place where all of that background noise and fear can go away.”

Patients sometimes wonder where doctors go when they’re not present on the floors. The best answer I can give is Somewhere Else. And if I were the patient, I wouldn’t want it any other way.

  1. My memories from these bad nights are sometimes a bit of a blur, with moments of clarity around seemingly trivial points and utter blanks around the important details. The mind does funny things to protect itself. 

Why I won't turn away non-vaccinators

There was a recent article in the Daily Beast by a pediatrician who is staunchly pro-vaccine. In the piece he explains why he does not take on as patients the children of parents who do not intend to vaccinate (or have not vaccinated. I respect his opinion. And on a personal level, for my own children and their own pediatrician, I actually agree. I personally would rather not take my child to a doc who is willing to not vaccinate, or who at least doesn't push for it strongly--certainly would never go to anyone who was anti-vaccine outright.

But professionally, it is more complicated. Given all we promise with the Hippocratic Oath, and all that is tied up in the anti-vaccine controversy, it is actually very hard to fire kids from (or not accept them into) a practice for this reason. I will not, with very few specific exceptions, do it, and this is a change in my thinking over the past few years.I have a few reasons:

  1. For one thing, we are punishing the child for the sins of the parents--maybe the kid likes the office, likes the staff, and because the parents are misguided, we force the kid to get used to a whole new doctor--a potentially traumatic event, depending on the connection present and the age of the child.

  2. It is also an incredible missed opportunity for education. When we say, "we won't treat you if you don't vaccinate" we are missing a potential opportunity to try to change the mind of a parent who may actually be less certain or more on the fence than they seem. I realize there are some who are adamant and vehement and have fixed false beliefs about this. And there we may not be able to make progress. But in reality, despite what the internet would have you believe, most parents are reasonable and want what's best for their child and aren't in fact so sure what that is.

  3. For the parents who are vehemently anti-vaccine, by firing them or not taking them on, we only feed into their distrust and suspicion of the medical community. Remember, this is a group who thinks we are in the pocket of big pharma, are experimenting on their children, etc., etc. If we say "look, I do not agree with your decision, and I am going to make you sign this sheet of paper from the AAP accepting responsibility for your decision, and I am going to push you every visit to change your mind, but I will treat your child and perform other pediatric duties" and we can get parents to agree to that, I think it earns us a lot more cred in the long run than being so confrontational as to refuse to see them at all.

  4. Some of these kids and parents, if they don't see me (or a general pediatrician since I am not currently a generalist) they won't see anyone at all. The parents will keep them away from all medical care for any reason. And that is infinitely more dangerous for the long-term health of that child and the whole family.

So when might I fire a family? If they won't sign the waiver--if they're going to try to blame me or the system if their kid gets measles or Hib or Hep B or cervical cancer or...well, then they're out. Because that is frankly just crazy. If you make a decision as a parent, about vaccines or otherwise, you have to own it. And to me that means accepting legal responsibility for your child and their health outcomes, just as we do as parents every day in all other walks of life. If a parent won't sign that document, it throws up all kinds of red flags about what else they won't accept responsibility for and what they might, frankly, try to sue about. And at a certain point, I need to protect myself.

But beyond that, as a pediatrician, I owe it to the child to let them form a relationship with a pediatrician who will be competent and thorough. I owe it to the child to try to convince their parents to vaccinate. I owe it to the child to try my best, despite their parents, to be their pediatrician.

Broken-in Genes: 23andMe, and Me...and the FDA?

A couple of months ago I wrote a piece for The Magazine entitled “Carry On”, also located on this blog here. In it, I discussed how some of the devastating genetic diseases actually persist because of advantages offered by only carrying the trait for the disease. I discussed, among other diseases, Tay-Sachs Disease, because my father is a carrier–it runs in my family. I ended the piece with this thought:

Without plans to have more children, I’m an evolutionary dead end regarding Tay-Sachs. But the trait? That, I could have. That, I could have passed on. For the sake of my children and my children’s children, I think I’ll go out and get tested.

And so I did. I had long known of a service called 23andMe that will do personal genome profiling for the low price of $99. Shortly after writing the piece above I finally bit the bullet and I went and got a kit—they will actually give them for free to physicians if you ask nicely—and I tested myself. As it turns out, I am positive for one of the Tay-Sachs mutations; I am a carrier. I had a 50% chance of this based not he inheritance pattern from my dad, so this isn’t too surprising, but it feels really nice to know. I found out lots of other things about my genes: my chances for having a “lifestyle” disease like heart disease or diabetes, my percentage of Neanderthal genes, and even who else in their community of tested individuals I’m related to. It’s pretty cool.

And boy did I do this just in the nick of time.

Apparently, 23andMe is now in trouble with the FDA. Their testing kit is not actually approved by the FDA or cleared for direct-to-consumer marketing! Oops. Apparently, this is not the first time they have had issues with the FDA–there were concerns raised earlier int he approval process, 23andMe did not satisfy all of the stringent requirements the FDA sets and yet continued to sell the tests. Why is this an issue? The test isn’t a new medicine–it’s not something that could do harm to me if I use it wrong. Or could it?

The FDA is concerned that customers will use the data gained from their 23andMe test results to make medical decisions or life decisions without the benefit of a physician. This, to be fair, is a very valid concern. Someone who finds out they don’t have any risk or heart disease above the baseline population risk, but then goes out on a McDonald’s bender, is exerting poor judgment and possibly causing themselves harm. Or what about someone who sees they have a 90% chance of having atrial fibrillation, reads about it online and sees that the disease carries a risk of stroke, and decides to commit suicide rather than live with the risk–it hasn’t happened yet, but that doesn’t mean it couldn’t.

And then there are the cynical reasons–the personal genetic testing market is a VERY lucrative one; one that right now, 23andMe is cutting insurers, hospitals, labs, and even doctors out of the financial benefits of by doing an end-run around them right to consumers. For us as consumers, that’s great–the testing is cheap and easy. For the rest of the health-care industry–well, they want a piece of the pie. And apparently, the insurance companies have been lobbying the FDA about 23andMe. So even though the FDA itself doesn’t stand to make money, as we all know, no decision is made in a vacuum. Especially a political or financial vacuum.

So for now, it seems, 23andMe is in fact still available–stock up on kits while you still can, because they probably will go off the market soon enough while 23andMe works to meet the FDA requirements. Or perhaps not–23andMe may try to keep doing it while working to satisfy the FDA. But unlike previous FDA contact, this letter seems quite definitive and even a bit exasperated. If 23andMe doesn’t comply, expect injunctions, legal action, court cases…this could drag on for years.

Well, while I watch all this from the sidelines, I can happily say, at least I got my test!

How to Find a Job, pt. 2

Linked to above, you will find part 2 of the guest post I wrote for Terry Kind's great medical-education and pediatrics blog Pediatric Career. She remains, as in my last post, the Director of Pediatric Medical Student Education at Childrens National Medical Center and has written extensively on the role of social media as a communication tool not just in the provision of medical care but also in medical education. (She is very active on Twitter and can be found at @Kind4Kids.) An excerpt follows:

Remember why we are all here in medicine, we want to help people. And we’re not only here to help patients, but also to help each other, including you, our junior colleagues. But we can’t help you if we don’t know you and we probably won’t help you as easily if we don’t know you well. So remember who you are, an individual who can easily matter a lot to another individual. Use that; it may just land you a job.

How to Find a Job

I was recently invited to write a guest post on the fantastic medical-education and pediatrics-focused blog Pediatric Career, edited and written (with the exception of guest posts) by Terry Kind. She is the Director of Pediatric Medical Student Education at Childrens National Medical Center and has written extensively on the role of social media as a communication tool not just in the provision of medical care but also in medical education. (She is very active on Twitter and can be found at @Kind4Kids.)

The basis of social media is the social interaction, something that sometimes gets lost in battles for retweets and followers and ads and pageviews. My own fellowship application success (indeed the timing of the whole process) was due in a major way to human interaction--to true scoial networking. I explain this in a two-part post, the first part of which is up at her blog. An excerpt follows:

We obviously have choice in our career paths, choices in where we apply, and even some influence over where we match. But it is different from the regular job market. The Match, and its computer-based assignment of slots in training programs, appears to remove human decision, choice, and influence from the process. Yes, we interview, and yes we are more than the collection of numbers on our applications, but ask anyone who has gone through a traditional job application process --where you compare multiple offers on factors like salary, benefits, job environment-- and it is absolutely different. However, as I discovered when going through my own training path, there is much more of a human element than I at least had ever realized, a human element that can truly determine your future career.

Carry On

Why some devastating genetic conditions persist

This essay originally appeared in The Magazine—please subscribe!

When my mother was pregnant with me, she and my father underwent screening for Tay-Sachs disease. She was an Ashkenazi Jew; he was not Jewish. Common in Eastern European Jewish populations, Tay-Sachs is a horrendous genetic neurodegenerative disease that kills most children before the age of 5. My father turned out to be a carrier for the mutation that causes it (an interesting story in its own right).1

My mother’s first test came back inconclusive. During the week that they waited for the results of a second test, my parents debated how to proceed if their unborn child were to have the disease. They were spared any tough decisions when my mother’s test came back negative. I was not at risk.

This mattered little until some 28 years later, when my wife and I decided to have children of our own. I had never previously had a reason to get tested for Tay-Sachs or any other genetic disease. But when two Ashkenazi Jews have a child together, it is suddenly very relevant — urgent, even. As with my own parents, the outcome of Tay-Sachs testing could affect our decision to proceed with a pregnancy already underway.

My wife’s obstetrician routinely tested mothers first, and thankfully, my wife’s test was negative for Tay-Sachs and every other testable genetic disease common in people of Eastern European Jewish descent. Because all of these diseases require both mother and father to be carriers, I was spared from testing, and I have continued to spare myself. I just never saw the point.

But over the years since then, my own ambivalence has raised questions. Is there any benefit to testing at all? After millions of years of evolution, why are these diseases still plaguing us? It turns out that answering these questions — especially in regard to how modern medicine addresses certain genetic diseases — involves a complicated interwoven set of traits and outcomes.

Bad genes, good people

Tay-Sachs disease is one of a number of fatal genetic diseases caused by inherited mutations or errors in our DNA. In earlier times, without an understanding of this, certain sick children would simply have been noted to be born to sickly families. Another common explanation was intrafamilial marriage like that between two siblings or first cousins.2

Of course, we now have names for many of these syndromes and diseases, including cystic fibrosis (CF), another familiar example present in my own ethnic group. While little can be done to cure these conditions, the medical community has become extremely good at prolonging quantity and quality of life by managing symptoms.3

Prior to the middle of this century, many genetic diseases were fatal early in life. A child afflicted with CF would have died of growth failure, malnutrition, and recurrent pneumonia in mid-childhood — and that would have been considered a long life.4 Similarly, a child born with Tay-Sachs in 1950 could expect to live no longer than six years. In those few years, neurologic deterioration results in blindness, seizures, and the inability to move, and life ends in agony.

But while half of those afflicted with CF are now expected to live into their 30s, a child with Tay-Sachs has the same prognosis as decades ago. Modern medicine still has little to offer these patients.

Based on the theory of natural selection, a disease that kills children prior to sexual maturity and reproductive age should have become a dead disease, with the mutated genes eventually vanishing from the population. However, in certain ethnic groups, these diseases and the mutations that cause them are quite common. Four percent of all people of European descent are carriers for the cystic fibrosis gene. According to the Center for Jewish Genetics, a similar percentage of Ashkenazi Jews are Tay-Sachs carriers.

So why, in 2013, after millennia of evolution, are these genetic diseases not only surviving but in fact common in certain populations?

Natural selection

The human genome contains 46 chromosomes, organized as two sets of 23 each; one version comes from the mother and one from the father. Some diseases are caused by only one defective dominant copy, in which its presence in either chromosome can result in its expression. But the majority are recessive diseases, mentioned above, in which two defective copies, one inherited from each parent, are needed for the disease.5

This is the case not only for classic genetic diseases like Tay-Sachs or cystic fibrosis, but also for non-disease recessive traits like blue eyes or blond hair. Possessing only one copy of a recessive gene typically results in no disease or no blue eyes; their owners are simply carriers, known as heterozygotes. But with a recessive gene contributed by each parents’ chromosomes, one out of four births from that couple, on average, results in a child with the disease or condition.6

In an early civilization in which there was no mitigating treatment that let an afflicted child survive to reproductive age, a set of parents with matched recessive genes should have had fewer of their children thrive and have their own offspring. Such couples should have been outcompeted by other pairs in which one or both partners lacked a recessive gene for one or more diseases. These other couples should have therefore had more children, and their children should have had more, and so on. Their descendants should eventually have dominated a population.

But what if having a mutant gene didn’t result just in being a carrier who never developed any symptoms of the disease? When there’s an evolutionary and reproductive upside to having a single copy of a recessive gene, it’s known as the heterozygote advantage. This holds true for at least one, and possibly both, of the diseases I’ve mentioned here so far: cystic fibrosis and Tay-Sachs.

As for what the advantages to being a carrier for horrible, historically untreatable diseases could be, one need look no further than the causes of death prior to modern medicine: the top three — for millennia and as recently as 1900 — were infectious diseases. If there were anything exerting selective pressure on a human population and its genes, one might suspect an infectious cause or two.

Something in the water

About 70,000 people worldwide have cystic fibrosis, and several hundred people die from its complications each year. Since 1989, scientists have known the mutated gene that causes it. It encodes a protein that transports chloride throughout the body. While individuals with two mutated copies of this gene will have the disease, people with only one copy — CF carriers — have no disease.

Instead, they have just enough of these proteins to confer protection against cholera, which is caused by the bacteria Vibrio cholerae and transmitted by contaminated water. Cholera results in a profuse watery diarrhea. Unlike other diarrheal illnesses, where the water you ingest fails to get absorbed and rushes out, cholera’s toxin actively hijacks the intestinal machinery of water and chloride metabolism. You secrete water, losing not just the stuff “passing through,” but water from the blood and tissues as well.7

Untreated, cholera can kill from dehydration in hours; it causes water loss as rapid as blood gushing from a stab or gunshot wound, and an epidemic of it — as the world recently saw in Haiti — can be a humanitarian disaster. But the cholera toxin acts on cystic fibrosis proteins. When cholera ran rampant in millennia past, CF carriers, with a mutated copy of the gene, had an advantage. They outlived and out-reproduced their compatriots who were too busy having the runs and dying of dehydration.

Tay-Sachs disease is historically a bit harder to puzzle out regarding a heterozygote (carrier) advantage. It had been observed anecdotally that Ashkenazi Jews were also relatively less likely to get infected with tuberculosis (TB).8 There was debate in the scientific literature about whether this was real or not, in part because until recently nobody could figure out exactly why this might be.

But in 2008, a paper was published showing that a relative of HEXA, the enzyme that is mutated in Tay-Sachs, helps defend against tuberculosis-type bacteria. The HEXA mutation causes those afflicted to accumulate the residue of certain molecules critical to the brain’s function. In both those with the disease and unaffected carriers, the related HEXB works overtime. The extra HEXB doesn’t harm carriers’ brains, but it may give Tay-Sachs carriers a better ability to fight off TB, based on mouse studies. Imagining the Europe of millennia ago, the advantage could have allowed Tay-Sachs carriers to outlive and out-reproduce their neighbors who were dying of TB, even while some of their siblings died in early childhood. (High rates of childhood mortality were always present before modern times even without genetic diseases.)

When there was no treatment for these infections and no treatment for the genetic diseases themselves, we had an explanation for the perpetuation of these genes.9 But with cures for these infections and treatment for some of these genetic disorders on the horizon, it’s worth considering whether these genes have, in a sense, rendered themselves evolutionarily obsolete.

Unnatural selection

Unlike Darwin’s finches or tortoises, or even early humans, modern humans can at least partially modify the outcomes of our genes and our environment. For example, we can treat and modify the course of CF enough to allow people to reach reproductive age. In resource-rich areas, we treat infections like cholera, which are quite rare anyway.

Without the deaths from these infectious diseases selecting for carrier protection from them, there is no longer any heterozygote advantage; people without a trait will reproduce at the same rates as those who are carriers. And with better management of the course of CF itself, those with the disease could, in theory, reproduce. (97 percent of men with CF are infertile, but not sterile; their sperm is viable.)

We could argue that human evolution has hit a sort of stalemate if not for two simple facts. Some genetic diseases are still rapidly fatal. And unlike non-human animals, we have genetic testing and, ultimately, matchmakers. For those who think that matchmaking went out of style sometime after Tevye’s daughters got married, there is still a strong matchmaking profession in communities that are relatively more genetically isolated — such as Ashkenazi Jews.

Their work has changed since the days of the shtetl. Now, most matchmakers work closely with genetic counselors to perform a litany of tests on prospective partners before they are even married. If it’s determined that their potential offspring would be at risk for any known autosomal recessive diseases, the couple is broken up, and another match is found.

It’s a harsh but effective process. Through this testing and matchmaking, one can ensure that nobody marries or reproduces with anybody who could produce a child with a genetic disease (that we can test for).10 There is also the potential, taken to its extreme, to eliminate the gene and the disease from the gene pool altogether.

There’s obviously a slippery slope (and one rife with the potential for abuse) when it comes to anything that might be considered eugenics. But if a community decides that its members want to voluntarily breed out a disease for which they are collectively at risk, it’s hard to see why this would be considered such a bad idea.

For treatable diseases like CF, this may be wholly unnecessary. But for avoiding conditions like Tay-Sachs, which simply requires that you never pair up with the wrong person in the first place, having this kind of genetic matchmaking is key.11

Without plans to have more children, I’m an evolutionary dead end regarding Tay-Sachs. But the trait? That, I could have. That, I could have passed on. For the sake of my children and my children’s children, I think I’ll go out and get tested.

  1. While I had thought, growing up, that my father was not Jewish, I learned the full details of his history when I was a teenager, and was fascinated to discover that his great-grandfather (my great-great-grandfather) was a German Jew. Despite the religious and cultural side of the Jewish heritage being lost before and during the war years through this ancestor’s marriage to a Catholic woman, the genes never lie. 

  2. The classic example of a consanguineous union leading to a greater likelihood of a genetic disease is the presence of Hemophilia B in the Victorian-era British royal family and its descendants, which then included numerous other royal houses of Europe. 

  3. In recent years, correction of the underlying genetic mutation has become possible through lung transplants (in the case of CF) or bone-marrow transplants (in the case of another genetic disorder, sickle-cell disease). If the patient survives the grueling transplant regimen, they can sometimes become considered cured. In lieu of this, symptomatic management and treatment of the sequelae of the diseases has prolonged lifespan for CF, for example, into the 40s. There is no cure or symptomatic management for Tay-Sachs, unfortunately. 

  4. In the era around 1938, when CF was discovered, many patients died as young as 1 year of age. The disease was, in fact, partially identified on the basis of autopsies of infants. 

  5. For parents who each have a copy of the mutated gene, the odds are 25% for each combination appearing in their children: two mutated copies, two non-mutated copies, one copy from the father, and one copy from the mother. 

  6. Unlike in the case of NASA’s Mars Rovers, where the strategy has been to “follow the water,” the water in the human body usually follows the salt — sodium chloride. We excrete or absorb chloride or sodium and water goes with it. No wonder spilling salt is considered such bad luck! 

  7. During World War II, TB ran rampant in Eastern-European Jewish settlements, but despite this, healthy relatives of children with Tay-Sachs disease did not seem to contract TB, even when repeatedly exposed. 

  8. Other genetic diseases common in certain populations, such as sickle-cell disease, glucose-6-phosphate dehydrogenase deficiency, and phenylketonuria, are also associated with a heterozygote advantage in protection from certain infections. 

  9. Mount Sinai Hospital, where I trained, has a very well-known Ashkenazi Jewish genetic disease testing program that works closely with matchmakers in the community. In Israel, testing for cystic fibrosis has a 100 percent utilization in ultra-Orthodox communities before marriage. These groups are more insular and thus have a higher risk for inbreeding and transmission of this disease. And we are already seeing that increased screening reduces the disease’s prevalence

  10. Having an abortion is off the table for observant Jewish groups, as well as for many other religious and ethnic communities. 

Maker of dangerous pain pills is 'ghost' that can't be found

This is why people shouldn't buy unregulated, uncontrolled dietary supplements. Read the story linked to from the title--it's a doozy!

For those who are unfamiliar with the story, Reumofan is a non-prescription "all-natural dietary supplement" that many people in the US use for pain relief--it is marketed for arthritis and joint pain. However, despite it's claims to all-natural ingredients like shark cartilage and glucosamine, it's effects are not natural at all:

Dozens of Reumofan users have suffered serious and sometimes life-threatening health effects after taking the pills, including liver injury, strokes and severe episodes of bleeding, according to federal records obtained under the Freedom of Information Act. Three reports involve deaths, though the full toll of those injured will never be known because most adverse events involving supplements and drugs are never reported to the FDA.

And apparently, the company may not even really exist, or at least, not in any trackable form. There is an ongoing FDA investigation and to date they cannot find the company itself to even begin prosecuting them for the harm they have caused. Amazing.

Paul Offitt discusses this general issue in his new book Do You Believe in Magic?: The Sense and Nonsense of Alternative Medicine. This supplements industry is entirely unregulated and so things like this can happen--a drug therapy that may be bogus in the first place can cause irreparable harm to many people and yet the manufacturer gets off scott-free because nobody knows who they are.

As for the doctors who recommend junk like this? Between getting kickbacks from the companies themselves or the fact that people make and market they're own remedies, most of the doctors who recommend entirely unproven and untested non-FDA-approved supplements, or at least who do so with no reservations, should probably not be trusted any farther than they can be thrown, and any such recommendations should be taken with a bucketload of salt.

To patients out there, I can say only this: do your homework--if something sounds too good to be true, it probably is.

An Interview With Dr. Saul Hymes (hey, that's me!)

I recently came into contact, through Twitter, with an aspiring doctor and former journalist named Chantal Mendes who was interested in interviewing me about what it was like to be a pediatrician and an infectious disease doctor. My answers are a bit rambling but she seemed to like them!

Dr. Hymes graciously agreed to answer any questions I might have and responded to my long list with some fascinating, touching, and informative stories about his experiences as an ID doc and I’m really excited that I get to share them! If you’re interested in becoming a doctor or in going into Peds ID in particular then definitely take the time to read through the transcript because there’s nothing like getting advice from someone who has been through it already.

Rather than post the whole transcript here myself, please click over to the title link and view it on her blog if you’re at all interested in what I had to say. Many thanks to Chantal for the opportunity to talk about myself!

Here we go again…all over again

Much has been written so far today about Jenny McCarthy joining The View as host, replacing Elisabeth Hasselbeck (who will apparently be joining Fox News in a not entirely surprising turn of events). Excellent pieces by Seth Mnookin, Wendy Sue Swanson, Claire McCarthy, (no relation?) and Phil Plait have said far more, and in a more eloquent manner, than I could hope to. Suffice it to say, I lend my voice to the chorus of educated, pro-science docs and science writers who recognize this for the public relations—nay, public health—fiasco that it is. Giving a bigger and louder mouthpiece to a woman who does not need one, and who uses it to say anti-vaccine, pseudoscientific drivel, is frankly dangerous.

People listened to Jenny McCarthy over the years and look where it got us: a measles outbreak in Brooklyn, a pertussis epidemic in California. And on. And on. Jenny McCarthy has indirectly contributed to disease and to death and my fear is she will continue to do so when she begins her new job on The View. Maybe she will prove me wrong. Maybe the years of writers like Seth Mnookin and Paul Offit and the disgrace of Andrew Wakefield have all served to cow her. Uh huh. And I’ve got a bridge in Brooklyn to sell you…

Given that she is being hired by ABC precisely to drum up viewers and spice up the ratings, I have to think they know exactly what she wants to say and are all too happy with her saying it. The ensuing controversy and uproar (look, it’s already started and she hasn’t even said anything yet!) are what the network wants to have happen because they generate what advertisers want: tweets, Facebook likes, web page hits, viewers, eyeballs, mindshare. Viewers over vaccines. Ratings over remedies. I think I finally figured out what ABC may end up standing for: “Adding to the Body Count”.

(I realize I am probably adding a tiny amount (how many people do you think read this blog?) of fuel to the fire by writing about this—adding to the attention Jenny McCarthy and The View are getting and may continue to get. I can only hope that when ABC sees the sheer quantity of bad press and social media mentions they are getting by this decision that they will reconsider it. Or at the very least, that we all can help educate people and discourage them from watching The View in coming seasons.)

Give It Your Best Shot

A better narrative is required to counter the anti-vaccine movement’s fairy tales

This essay initially appeared in The Magazine—please subscribe!

During my pediatric residency, I took care of a three-week-old girl who went deaf from bacterial meningitis due to Haemophilus influenzae type b, an outcome against which pediatricians and other physicians have had a preventative since 1984. This little girl’s mother had never vaccinated her daughter or any of her children against anything; until that moment, they had been lucky.

Shortly before she fell ill, the girl’s older brother came down with an upper respiratory infection from this bacteria. He ended up being fine — it usually causes no more than a bad cold in older children — but before he cleared the infection he passed it to his baby sister.

I imagine the sounds in this baby girl’s first days of life: Her mother’s voice cooing to her. A silver Tiffany rattle jangling. The bubble and hiss of water on the stove boiling over as her bottle warms. Those sounds, uninterpretable to her at three weeks in the inchoate structure of a still-developing brain, are all she will ever hear. On her 22nd day of life, she became deaf and the world went permanently silent.

This was preventable. A simple decision made with the older child could have saved the little girl’s hearing. Most of us, if offered the knowledge of the consequences of that choice, would take the other path and vaccinate. It’s a “gimme,” isn’t it?

Which is why I was surprised years ago at the mother’s response when I asked if she would now give her children the benefit of modern medicine’s vaccinations.

She said no.

Why was it so easy for her, even when confronted with such an outcome, to cast aside nine decades of vaccine success stories?

Milk made

From the Latin for “cow,” vaccination owes its name to the first virus used in a vaccine: cowpox, or Vaccinia virus. In 1796, Edward Jenner acted on the long-known phenomenon that milkmaids who had contracted cowpox did not later come down with smallpox. Cowpox turns out to be similar enough to smallpox, with less deadly consequences, to provoke the immune system to create antibodies that later fight off the more virulent disease. Jenner developed the smallpox vaccine we still use today.[1]

The term was later applied more broadly to the concept of inoculation with any infectious organism in order to induce immunity. And with the invention of tetanus and diphtheria vaccine in the 1920s, polio vaccine in 1952, and others later on, the application for immunization was broad indeed. The widespread use of vaccination has transformed our world:

  • Infant mortality due to infectious causes has greatly decreased, despite claims to the contrary.

  • Previously widespread childhood disease and death from infections like meningitis and pneumonia is decreasing.

  • Certain previously widespread cancers, like liver cancer caused by hepatitis B, can now be prevented by vaccination against the causative agent.

Vaccines have been wildly, demonstrably successful. In the face of all the evidence, why did the mother of this little girl choose not to vaccinate? Like any parent making a decision, those who do not vaccinate choose based on their perceptions of the risks and benefits to their child — risks that have lately been perceived as too high.

Mercury rising

People have questioned the need for vaccination back to Jenner’s invention of it.[2] Criticisms have come and gone like fads, but the latest has been as hard to eradicate as some of the diseases that vaccines prevent. The current wave of anti-vaccine fervor dates to a single study published in 1998 by Andrew Wakefield.

The study claimed to show a link between measles-mumps-rubella (MMR) vaccination and the later development of autism. It was all over the news; understandably, parents were nervous. And then some stopped vaccinating their children. That shift was enough to overcome “herd immunity,” a statistical point at which sufficient immunity levels in a community will abort transmission and protect even unimmunized individuals. Breaking herd immunity leads to outbreaks.[3]

The study didn’t posit what biological cause connected MMR and autism. That left room for speculation, initially pointing to an organic compound that contains mercury (thimerosal) and has been used as a preservative in MMR and other vaccines since the 1930s. Then it was other toxins. Then concerns turned to the number of proteins in the vaccines — we were giving our children too many antigens for their immature immune systems. As with most arguments and concerns arising from fear, the anti-vaccine community became a hydra: as every concern was addressed, two, three, four new ones appeared to take its place. Something in the vaccines was causing autism.

Fifteen years later, nearly all concerns have been addressed in spades. To begin with, we now know that Andrew Wakefield committed fraud and misconduct in his initial study, motivated by the promise of money generated from increased medical testing and from lawsuits against vaccine manufacturers. The Lancet, which published the study, shamefully took until 2010 to retract it fully. (Wakefield had his medical license revoked in Britain, but continues to speak to anti-vaccination groups promoting his discredited research.)

We know that MMR has been shown over and over and over again to have no link with autism. Thimerosal was removed from vaccines in the United States in the years following the Wakefield study, but this hasn’t affected the rate of autism among vaccinated kids, nor did it in countries that had earlier removed it.[4] We know that the number of antigens a child is exposed to with even a single bacterial ear infection far outnumbers the antigens in all the vaccines put together, and moreover has no bearing on autism rates. (The Autism Science Foundation has additional links to studies for further reading.)

With all this to help assuage their fears, why do parents still choose not to vaccinate? It’s about the narrative created by anti-vaccine advocates who shape misinformation, outdated or discredited studies, and anecdote into a compelling story that provides a putative cause for a condition that appears to be growing in incidence.

“That’s My Science”

Jenny McCarthy. While the anti-vaccine movement did not start with her, a centerfold model and cable-television star, she has become the public face of many aspects of it thanks to media interviews and rallies. She has been a vocal proponent of reducing the number of vaccines, eliminating additives to vaccines, and altering the vaccine delivery schedule.

One of her notable interviews was on Larry King Live on CNN. It was typical of her media appearances: over the course of the interview, Jenny McCarthy and other anti-vaccine advocates are allowed to present their viewpoint with no opposition from the mainstream medical community or the pro-vaccine advocacy community.

Even when opposition is allowed to be presented, it isn’t on the same basis as McCarthy. In a now-famous interview on the Oprah Winfrey Show, Oprah reads a statement from the Centers for Disease Control (CDC) which states, among other points, that science has shown from multiple studies that there is no evidence that vaccines cause autism.

To which Jenny replies, "My science is Evan, and he’s at home. That’s my science,” and the audience tearfully claps, nodding in agreement. To paraphrase George Lucas: So this is how science dies — to thunderous applause? In the court of public opinion, data, and statements, and science are no match for an emotional parent and her child.[5]

So how can we, the medical community — how can I, as a pediatrician — win an argument like this? To us, in the world of science and medicine, data trumps anecdote. Is there a way to make data a narrative? Is there a way to make the right kind of data heard? Because the data is there. Cases like the one I began with are becoming all too common…again:[6]

  • Measles, once eliminated from the United States, is now on the rise. In 2011 there were 222 cases, many of which were in undervaccinated children. One outbreak in Minnesota affected six children whose parents had willfully withheld the MMR vaccine due to concerns over autism.

  • Whooping cough (pertussis) cases have been rising overall for the past two decades, and outbreaks are becoming more frequent, with 27,000 cases in 2010, and preliminary data from 2012 suggesting even more. Much of 2010’s outbreak was due to parents’ intentional undervaccination. In 2012 there were at least six deaths in children due to pertussis — a disease we can entirely prevent.[7]

Each of these data points is, of course, a story.

Empirically human

We, as people, as parents, need to see the evidence in front of our faces. Rational as we apes are, our emotional mammalian brains still respond to a good scare or gross-out far better than to a research paper. In fact, our rationality as a species demands this: our curiosity and intellect, while enabling us to abstract, also compel us to disbelieve what we cannot see and understand. Damage, morbidity, and disease of a personal nature all trump data. At least they do for my patients’ parents, and so perhaps for everyone.

Recently, I had to counsel a family on giving the tetanus/pertussis vaccine (Tdap) to their pre-teen son. He had a neurologic diagnosis, and the father was convinced that his previous pertussis shot at age four had caused it. I failed to disprove the connection between the vaccine and the disorder to the father’s satisfaction, and he nearly took a swing at me. I managed to calm him down.

The father then said, “Well, I’m not sure which of these vaccines he really needs, is all.” So I told him the other data: that pertussis is rising, that Long Island is in the middle of an outbreak right now, that not vaccinating is known to put you at risk. And I told him a story: that I had just cared for a baby in the ICU who was hospitalized for pertussis for three weeks, on a ventilator, and nearly died because the parents hadn’t vaccinated her yet. “Okay,” he said. “I guess this is one he really needs.” And that was that.

I was taught to use data to prove my point of view and to refute others. By knowing the history of vaccines, their historical benefit, and why the anti-vaccine groups are wrong — surely this alone will allow me to convince parents to vaccinate. But I can see it’s not always enough. As a doctor, I don’t have to convince someone that vaccines don’t cause harm; I just have to convince them that not vaccinating does.

So: let me tell you a story about a little girl who went deaf.

Biographical details of patients and families were changed to protect their privacy.

  1. Others had tried this concept over a period of 20 years before Jenner, but he was the first who publicized his results. In 1796, he successfully inoculated a young boy, James Phipps, with cowpox, thus protecting him against smallpox; he later proved this by exposing the boy to smallpox as well. Medical ethics were…shakier…in those days.  ↩

  2. Many of these are outlined in two excellent books by Paul Offit, MD, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia, among several other titles and positions. They are: Deadly Choices: How the Anti-Vaccine Movement Threatens Us All, and Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.  ↩

  3. When roughly 85% to 90% of a community is immune to a disease, its transmission is aborted. That typically prevents the remainder from developing it and thus passing it on. However if immunity drops below those rates, transmission can begin again. This jeopardizes the health of both those who have never received a vaccine and those who have. Immunization isn’t perfect, and the more a disease spreads among those susceptible, the more likely a small percentage of inoculated individuals will also develop a disease.  ↩

  4. In fact, not only has thimerosal been shown to have no link to autism, the WHO and AAP recently came out against the UN’s proposal to remove thimerosal worldwide. Thimerosal provides cheap vaccine preservation for the developing world, where refrigeration and rapid transportation are in short or erratic supply. To remove it would drastically disrupt global vaccine supply and delivery.  ↩

  5. Complicating matters, McCarthy said in 2010 that her son had been “cured” of autism through diet and other means. Time magazine raised the issue then that the symptoms she describes her son having and the subsequent alleviation of them point to Landau-Kleffner Syndrome or, even more prosaically, delayed development.  ↩

  6. I say “again” because this is obviously not the first time vaccine-preventable illnesses have led to death or disease. However, the first time, which ended 50–100 years ago, was because we didn’t have vaccines against the diseases.  ↩

  7. Editor’s note: Your editor’s home state of Washington had a pertussis epidemic in 2012 with nearly 5,000 reported cases, a fivefold increase from the previous year and on track to be five times higher than 2013. This was partly due to the easy availability in Washington of conscientious exemption from school vaccination for religious, medical, or philosophical reasons. A new law in 2011 required a licensed health-care provider to sign off on the exemption, and this resulted in a drop over two years from 6.5% to 4.7% of parents opting out. Reports indicate even higher vaccination rates in the current school year. —gf  ↩

Measles in Brooklyn

The question a story like this prompts, is why? Why, in the face of easy, accessible vaccination do people still not vaccinate their children? There are currently 34 reported cases in a Measles outbreak in Brooklyn, NY. All were unvaccinated at the time of infection–23 who had refused vaccination, 6 who had delayed vaccination, and the saddest part: 5 who were too young to be vaccinated. 26 were children.

Some of you who read this may think, “so what? Measles isn’t so bad…a little rash, a little fever…” Not in this case, from the New York DOHMH themselves: “Complications have included pneumonia, a miscarriage, and two hospitalizations.” Measles can injure. Measles can kill. It is not a joke. For the parents of the children who have been infected to have willfully either delayed or denied vaccines to their children, is akin to have purposefully done them harm.

Just as bad, the actions of this (for now) relatively small group has inflicted considerably larger damage to those around them. The 34 people infected have exposed more than 700 people, resulting in mass screening and prophylaxis at local hospitals that equates to considerable time and healthcare expenditure. And those 700 who may not be ill, but who have to take time out of their life to prove their measles immunity or receive a dose of post-exposure vaccine or antibody that they may not have wanted to take, well I guarantee you they are not happy about the impact this outbreak has had on them.

Finally, the 5 children who were too young to be vaccinated–they did not do anything to deserve a measles infection. Their parents may have even been planning to do their duty and vaccinate. But because of the ignorant actions, or lack thereof, of a group of people who are anti-vaccination, innocent children have suffered. This is not okay. This is not right.

We do not allow child abuse. We do not allow child neglect. Well, where do we draw the line? For how long will we continue to tolerate willful vaccine delay or refusal? The outbreak is at 34. For now. Must it spread further? Must adults die? Must children die? Measles is preventable. This is preventable. Vaccinate yourselves and your children and help prevent outbreaks like this.

The text of the Health Department’s Alert e-mail follows:

May 21, 2013

ALERT # 12: Update on Measles in New York City

1) 34 cases of measles have occurred in Borough Park and Williamsburg, Brooklyn. Additional cases will likely occur, because a large number of children and adults have been exposed to infectious cases. 2) Providers are reminded to consider the diagnosis of measles in clinically compatible cases, immediately report and isolate suspect cases, and vaccinate children and adults. 3) Children need to receive their first dose of MMR vaccine at 12 months of age. Older unvaccinated children should be immunized immediately.

Distribute to All Primary Care, Infectious Disease, Emergency Medicine, Internal Medicine, Pediatrics, Family Medicine, Laboratory and Infection Control Staff

Dear Colleague,

The measles outbreak in Brooklyn is continuing to grow. To date, there have been 34 confirmed cases, including 27 in Borough Park and 7 in Williamsburg. Additional suspected cases are being investigated. All cases are part of the Orthodox Jewish community and were unvaccinated at the time of exposure, including 5 cases too young to have been vaccinated, 23 cases who refused vaccine, and 6 cases whose vaccines were delayed. Cases range in age from 0 to 32 years (median 7 years), including 5 infants, 21 children, and 8 adults. Complications have included pneumonia, a miscarriage, and two hospitalizations. Measles is highly contagious. We have identified over 700 people who have been exposed, predominantly in health-care settings. Home isolation is required for up to 21 days for exposed persons without evidence of immunity to prevent further exposures. To interrupt the spread of measles in your community, we ask for your assistance regarding reporting, isolation, prophylaxis, testing, and vaccination.

Report any suspected measles case with generalized rash and fever to the Department of Health and Mental Hygiene (DOHMH) immediately. Do not wait for laboratory testing to report. Delays in reporting have resulted in missed opportunities to prevent disease using post-exposure prophylaxis. To report, call 347–396–2402 (weekdays 9–5pm) or 212–764–7667 (after hours and weekends).

Place suspected cases immediately in an airborne isolation room. Alternatively, see them at the end of the day after all other patients have left the office. Avoid having patients with rash in the waiting room. Post a sign outside your office notifying patients with rash to call before entering. If an airborne isolation room is not available, place a mask on the patient, and don’t use the exam room for up to two hours. Tell suspected cases to stay home while contagious, until day five after rash onset.

Post-exposure Prophylaxis
If a suspected exposure occurs in your office, offer the 1st or 2nd dose of MMR vaccine within 72 hours to everyone aged 6 months and older who was in your office through two hours after the suspected case left and who does not have a contraindication to vaccine. Do not delay MMR if immunization records are not readily available; there is no harm to giving an extra dose to someone who is fully vaccinated. Wait at least 28 days between doses of MMR. Exposed staff without evidence of immunity should be furloughed from days 5 through 21 after exposure, regardless of receipt of post-exposure prophylaxis.

Immune globulin should be given as soon as possible to susceptible individuals exposed to measles who are at high-risk for complications: infants aged under 6 months, infants aged 6 - 12 months who do not receive MMR within 72 hours, immunocompromised persons, and pregnant women who are not immune to measles. Immune globulin must be given within 6 days of exposure to prevent or modify measles.

Laboratory Testing
Collect blood for measles IgM and IgG and nasopharyngeal swabs for PCR testing of suspected cases. DOHMH will pick up and test specimens. Synthetic (non-cotton) swabs and liquid viral transport media can be purchased from commercial laboratories. These are the same kits used for influenza testing. DOHMH can also provide kits as needed, while waiting for your supply. Do not send specimens to a commercial lab for testing as this will only delay the diagnosis and delay outbreak control measures.

Timely vaccination
Ensure patients are up to date with their 1st dose of MMR at age 12 months and 2nd dose at age 4 to 6 years. Administer immunizations at the start of recommended interval. Do not delay. For assistance generating recall letters for patients not up to date with MMR or for assistance ordering MMR vaccine, call 347–396–2400. Children aged 6 to 11 months who will be traveling internationally should receive a dose of MMR before travel, although this dose does not count towards completion of the routine schedule. Ensure all healthcare staff have two documented doses of measles-containing vaccine or a positive measles IgG titer.

Please call DOHMH if you have questions at 347–396–2402 (weekdays 9–5pm) or 212–764–7667 (after hours and weekends). Your cooperation is appreciated.


Jennifer Rosen, MD
Director, Epidemiology and Surveillance
Bureau of Immunization

Jane Zucker, MD, MSc
Assistant Commissioner
Bureau of Immunization

Odds and Ends

Autism and Lyme Disease?

This is a thing?? Apparently I just moved out from a rock that I’ve been living under since 2008, when a paper was published linking Lyme seropositivity with autism in a cohort of children. I’m astonished, given the pervasive nature of the vaccine-autism controversy, that this other reported link has not come across my examining table. For those who are unfamiliar, Lyme Disease is a tick-borne illness endemic in parts of upstate New York, Long Island including Suffolk County where I work, parts of Connecticut, and a number of other areas in the Northeast and New England. It has been blamed for all manner of chronic complaints and apparently, for the past 5 years, for autism as well. But no more! Intrepid researchers from my alma mater have conclusively shown in a case-control study that there is no link between these two diseases. Phew! I for one now I will sleep easier at night… In all seriousness, this is a great paper and takes at least one fixed false belief down a notch. Disproving pseudoscience with science, one step at a time!

A Great New Podcast, or rather my recent introduction to it, is another piece of evidence that I’ve been living under a rock. How else did I miss this great podcast produced/hosted by Jason Newland, a pediatric ID colleague of mine, and Josh Herigon, a medical student and researcher who works with Dr. Newland. It’s a great podcast, covering wide-ranging issues on clinical care, patient safety, antibiotics, medical education, and more.Take a listen–if you’re in the medical field, or even if you aren’t, you won’t regret it! And maybe they’ll deign to have a little junior Peds ID faculty member from Stony Brook on as a guest…? You never know!

That’s all for now. Planning for a longer post on Lyme Disease, given the season, in the coming week.

An Update on Vaccines

In the days since my article on vaccines I have received a lot of feedback. Many readers have been very supportive but some have taken issue with some of my arguments, my mode of presentation, or raised questions that I did not answer. They presented a variety of valid, or at least understandable, concerns which I will take the opportunity to address here. At the request of those who contacted me I will respect their desire to remain anonymous.

I feel as though you did readers a disservice in not even casually mentioning any of the adverse effects of vaccines

The Institute of Medicine (IOM) document the reader linked to is an excellent summary statement on both established and unclear adverse effects of vaccines. I did not delve into this due to space considerations and the nature of the story I wanted to tell. But they are absolutely right, vaccines are not without some degree of adverse effects, side effects, and/or allergies. Most of these, however, are mild and do not compare in severity to the impact of a single infection with a vaccine-preventable disease, let alone an outbreak. And the adverse effects that are unprovable or unclear in their associations, by virtue of their uncertainty, are not worth using as a basis for vaccine policy; certainly not in the face of stronger evidence arguing for continued vaccine use. This is the ultimate conclusion of that IOM document cited above

In your article, you cited pertussis outbreaks as one of the strongest reasons to vaccinate, but you didn't give empirical evidence that the current outbreaks are actually related to under-vaccination.

We do in fact have a number of studies (I give one here as an example) that show that the lack of vaccination with pertussis specifically is a real and significant factor for increased outbreaks. Similar studies have been done for other vaccines.

A doctor at UCLA said “...the possibility that the pertussis bacterium has mutated ‘is an important hypothesis to test.’” Couldn’t this be the cause of outbreaks and increased disease?

This is absolutely true--this is an important hypothesis to test. There is a recent study from February in the New England Journal of Medicine that shows a number of strains have mutated to lose an antigen--Pertactin--that is contained in the vaccine. Is this a part of the reason for increased disease? It might be--we just don’t know. There will certainly be studies done by this group as well as others to look at the changing epidemiology of the circulating strains of bacteria. But even if this is multi-factorial (which for pertussis it almost certainly is--see below), not vaccinating still plays a major role.

In trying to objectively assess the risks of not vaccinating my children for pertussis, I see evidence that seems to be starting to lean toward the possibility that vaccination isn't even effective.

There is indeed some evidence that with the newer acellular Pertussis vaccine rolled out in the late ‘80s/early ‘90s, there is waning immunity over time, in particular between the 4-6 year and 11 year vaccine doses. However, this is a reason to develop either a new more immunogenic vaccine, or to add an extra vaccine in to the schedule to keep immunity up (until a new vaccine that lasts longer can be made if that is possible). The solution is not to further dilute the vaccine schedule or delay vaccinating.

It seems as though there are 100x more studies trying to prove the effectiveness and safety of vaccines than there are studies of adverse effects.

In fact, any study that addresses the safety of a new vaccine is by definition looking at adverse effects. Any new product that is approved has to go through a standardized FDA protocol, even vaccines, and even back in the 60’s when the older ones such as MMR were made. The newer ones go through rigorous safety evaluation including short- and long-term follow-up.

From my understanding, the reporting of possible vaccine reactions is not compulsory, so it's probably underreported — maybe even severely underreported given the aforementioned bias — and yet there are hundreds of thousands of reports of adverse vaccine reactions...Since I’m not a doctor it’s hard for me to find and parse medical literature. Are you aware of any strong studies done on the VAERS data itself and the likelihood of underreporting?

VAERS is indeed problematic. It uses passive reporting--there is no organization that actively seeks out adverse events. Instead doctors or others must report events themselves. In fact, the nature of VAERS is that anyone can report, not just a physician. And as was rightly said, many physicians are ignorant of VAERS and so do under-report. There are also MANY studies on VAERS, both about it in general and specifically making use of its database. Pubmed is a repository of many, many, many published studies (essentially all journals--though some aren’t indexed, all the major ones are)--go to their main page and just type in VAERS; many examples of VAERS-related studies will show up.

A caveat too about VAERS: because VAERS only catalogs associations, it would be possible to walk out of a doctor’s office after getting a tetanus shot, go drive away, and get hit by a car; and then you could have someone file a VAERS event saying that the tetanus shot was associated with the car accident. That would be a hard sell from a scientific standpoint. And since anyone can report, many with an axe to grind do so there, so we all need to take the VAERS data with a teaspoonful of salt.

In my research of the polio vaccine, it seems as though a person in the United States is now statistically more likely to get polio from a vaccination than from the live virus.

That used to be the case when we gave OPV, the oral polio vaccine, which contained live virus. That was phased out in the US in 2000 and this is continuing in more and more other parts of the world as the disease is eradicated. We have switched to IPV which does not have any live virus and so does not carry a risk of transmission. The only polio seen in the US since 1979 has been imported from other countries or, as above, before the early 2000’s, due to the vaccine. In recent years (since the late 1990’s) there has been no imported polio from other countries either. In fact, the reason I spent not much time on polio in my article is that this is indeed a vaccine that may be able to be phased out in the next few years, as Smallpox was, because of global eradication efforts--due to vaccination.

I hope you are catching on to the fact that I'm not a Jenny McCarthy type, mindlessly regurgitating bad data and mythology. I'm a dad having a deep intellectual battle over what’s best for the children I love. It’s unlikely that my kids would be harmed — especially severely — by vaccines, but it would tear me up if they were. It’s also unlikely that my kids would be harmed by not being vaccinated, but it would tear me up if they were.

I hear this comment loud and clear. And yes, the reader is right, the risk of catching measles or whooping cough, even with outbreaks and rising rates, is still small. And the risk of some similarly severe life-threatening event from a vaccine is small. Nobody knows for any single child what their chances are of getting whooping cough without being vaccinated--it depends on their contacts, exposures, etc. But similarly, nobody can tell you what the odds of one of your children having anaphylaxis due to a vaccine is. We can quote overall rates and populations, but individual patients are not populations and so the numbers don’t predict the small scale single events.

Part of the reason I still haven't done any vaccines with my children is because doctors wouldn't engage with my wife and I on a rational level. Which probably has to do more with fear and malpractice insurance, but it's a pretty sorry state when pediatricians live in fear as one of the most sued branches of medicine. We had several doctors completely refuse to see our children unless we followed the exact recommend vaccine schedule. And when we brought up safety concerns they pulled the same fear mongering everyone accuses the anti-vaccine crowd of using inappropriately.

I don’t think that’s true about pediatric malpractice suits--our rates of lawsuits are one of the lowest in fact, at least as of a NEJM paper from 2011.

Now, the refusal to see parents who either don’t vaccinate or wish to use a different schedule is a hotly debated topic among general pediatricians. Some feel that turning away patients is unethical. But some feel that to not vaccinate is also providing unethical & substandard care, doing harm and violating the Hippocratic oath. It is not about money or lawsuits or malpractice in a legal sense or risk, it is about professional ethics and our own code of morals--and this is, in fact where I fall. And again, maybe that’s unfair of us to so judge both ourselves and our patients. But for docs who view delaying vaccines as harming a child, you would not want them to see your child because they would be violating their interpretation of the Hippocratic oath to do so.

That's another aspect of your article that bothered me. I get that you were trying to create a "better narrative", but using the same unsound tactics as the opposition is not how a better narrative is created.

Well, the point of my piece was really that for a particular subset of people, data on its own does not work. Numbers and studies and such, while they may help you to decide, aren’t going to work on, for example, Jenny McCarthy. And my point was that in those settings, anecdote together with data helps reframe the story in terms that some people can get their heads around. This is not ideal. It does not make my own scientist-brain happy. But if it gets my patients what they need, it may be a necessary evil with certain folks who can’t hear things any other way.

And the term “a better narrative” was not to say that anecdote or fear-mongering is better than data--it’s specifically about the idea of integrating a more personal illness narrative aspect into our work on our side, given that they have done so on theirs. Some interesting writing on the idea of “narrative medicine” has come out in recent years--if you’re interested, I recommend you look into Rita Charon, Arthur Kleinman, and the Columbia University program on Narrative Medicine.

I thought it was incredibly unthoughtful of you to lump "reducing the number of vaccines, eliminating additives to vaccines, and altering the vaccine delivery schedule" into the jumble of myth and psudo-science you were trying to debunk.

That’s a fair point. I was trying to flesh out Jenny McCarthy’s position, but may have overdone it. That said, I would argue, outside of Polio being eradicated, the idea of reducing vaccines really isn’t safe or appropriate. And the vaccine schedule has been studied to death--every time a new vaccine is introduced they study it in combination with other vaccines to see when it should best be given. A random schedule thought up by Dr. Sears or Jenny McCarthy or someone else just doesn't have the same weight as one studied by multiple experts and panels. That leaves trying to eliminate additives to vaccines, which I’ll grant is a very reasonable idea that has in fact been and is being studied (search Pubmed for legitimate studies on Thimerosal to start).

My view is that scientists should be embracing the anti-vaccine group as the ultimate control group for long term studies about vaccine safety (similarly, the kids who are on alternative schedules). If parents are going to contentiously (sic) object to giving their children vaccines, it should at least be used to further the science of vaccines!

Scientists are already doing so at least with regard to some issues. But controlling for all the possible interfering factors and coincident conditions in these two patient populations is very difficult. The other issue is that many parents who don’t vaccinate are untrusting of medicine and don’t want to participate in surveys or long-term studies. The exception is some of the surveys administered by known anti-vaccine groups but there the element of bias is so strong it is impossible to know what to make of any results.

That said, see here or here for studies that try to compare across these groups and look at adverse reactions, infections, allergic issues, among other things.

feel free to use any of this for a "frequent objections" post on your blog.

Will do!

Hopefully this serves to clear up some issues and confusion. And to those who I have not yet convinced, well, I may never do so but it doesn’t hurt to try!

The Narrative--adding it to our medical toolbox

For those of you who may be finding this blog for the first time via my newly published piece in The Magazine, the piece linked via the title may be of interest.

Long ago, in medical school, I took a course in Narrative Medicine from Rita Charon and Nellie Hermann. It's a fascinating idea and I agree with the JAMA piece that it needs to be part of our armamentarium, together with evidence-driven care.

And credit where credit is due, to Seth Trueger, also @MDAware on Twitter, for sending me this great JAMA article.

Insurance against what?

Just a very short post today with some food for thought. I spent a good portion of my day yesterday struggling to ascertain whether insurance would pay for certain specific testing on a post-mortem specimen from a patient–that is, a specimen from a dead patient.

As I discovered, almost no autopsy-related charges are ever paid by insurance. They are nearly always incurred and paid by the hospital at their own expense. This seemed bizarre to me as the autopsy was in association with a hospitalization and an illness which was covered by insurance.

However, as a colleague pointed out to me, health insurance is precisely that: insurance of one’s health. All of the preventative services covered, all of the surgeries, they are aimed at keeping a person alive and healthy. Very reasonably, once a person dies, the role of insurance is rendered moot–the company’s obligation to insure anything seems to me to be gone once that insured item doesn’t exist. [1]

Of course, this also raises the question if who should be paying for autopsies? Should the hospital, as they are now? Should another type of post-death insurance be created, if it isn’t already? Should families be billed? (I think this last option is highly undesirable)

It’s an interesting question that I had never had occasion to think about but for now I think I am, amazingly, inclined to agree with the status quo and the idea that insurance against one’s health should not pay for testing or activities that cannot restore that health after death.

As always, I welcome comments and thoughts from others!

  1. except of course in cases where one is insuring theft or damage of property that can be replaced and returned. For now at least, once dead, a person cannot be replaced with a clone or brought back to life. The health insurance industry will have some thinking to do if we ever get to that point…  ↩

Snip, Snip

Another week, another post; this one on Jewish ritual circumcision…wait, what? How is this an infectious disease issue, you may ask? I’m not spoiling the ending…you’ll have to read to find out.

First, a meta-post: my apologies for the delay between my last post and this one. I have been struggling with how to best write this particular post, and when you read it, you’ll understand why. While I make no apologies for the views expressed on this blog, and I certainly do not shy away from controversial topics, even I had to acknowledge that this particular one is a bit dicey and had to be handled carefully; and it took me some time to figure out how best to do just that.

Those of you who know me In Real Life, know that I am Jewish. For those who are meeting me on this blog, well, shalom! However my views run toward the reform—the nonobservant—end of the spectrum. The particular subject of this blog is, in general, absolutely central to the Jewish experience. Circumcision (warning, some images NSFW) is, according to the Torah / the Old Testament, the primary covenant between God and the Jewish people. It is, arguably (and according to a more traditional viewpoint), the single most important practice that marks a male as Jewish. Separate from this, circumcision and one’s status as circumcised or not is also a highly personal and intimate thing, simply due to the details of the act itself [1]. So: a blog post about an extremely personal, intimate issue that is one of the central tenets of a major religion–where do I sign up? Here, apparently…

But as you’ll see, I am not writing about circumcision in general, nor do I wish to address any of the broader controversies surrounding it. No, here I am writing about one very specific practice, limited to a relatively smaller group of ultra-observant Jews, that has profound and personal (to my professional experience) infectious disease implications.

Now, where to begin…

The New York City Department of Health and Mental Hygiene (DOHMH for short) recently made headlines when they passed a regulation that will require consent from parents before an infant can have a particular form of Jewish ritual circumcision. The practice, known as metzitzah b’peh, is prevalent in parts of the ultra-Orthodox community and is distinguished by the circumciser (a mohel) using his mouth to remove blood from the incision. Its origins lie in a series of rabbinic injunctions regarding the practice of ritual circumcision and the need to let a small amount of blood out to, ironically, prevent infection. As its origins are hundreds of years old, the true medical necessity of this practice is doubtful to put it mildly. And while it should be obvious to any observer, it had apparently not occurred to the rabbinate that advocated for this practice that this itself could be a HUGE infectious risk.

Sure enough, over the years that this practice has been performed, a number of infants in Israel and scattered around the rest of the world have contracted disseminated Herpes Simplex Virus (HSV) infections from mohels who had an oral HSV infection at the time of the circumcision. In general, infants who are exposed to HSV through skin or mucous membrane contact are much less able to limit it to a simple skin infection. The virus invades and causes a disseminated infection, with organ damage, meningitis/encephalitis, or both. And the brain infection can lead to deafness, blindness, or permanent brain damage. Ultimately a severe disseminated HSV infection in an infant can be fatal; it frequently is, without treatment. And infants exposed to HSV via metzitzah b’peh are no different from infants exposed through other means.

This became an issue for the City of New York, and then in particular for me, when infants born in ultra-orthodox communities in Brooklyn began to contract HSV from mohels who practiced metitzah b’peh, starting in 2003–2005. To date, 11 infants have been identified who contracted an HSV infection in this way. I have taken care of one of them.

As a 4th-year medical student I took care of an infant who was in the throes of an acute HSV infection secondary to this practice. He had already suffered severe brain damage and was blind and possibly deaf. He was in the Intensive Care Unit. He was very, very sick. At the time, I was furious at his parents, who blocked investigation into the case at every turn. The family was hasidic, typical of these cases, and while the mother’s claims to be ignorant of the identity of the mohel and absent at the circumcision were believable given the gender separation present at orthodox religious ceremonies, the father’s professed ignorance was an obvious lie. In traditional circumcisions, the father holds the infant on a pillow on his lab while the mohel performs the act. That the father would not have seen the act itself, or met the mohel, was an impossibility. But they did not want the secular medical community invading their sacred world. They did not want the secular law enforcement community invading it either. And despite our pleas, and those from the city, that stopping this practice at that time would prevent needless future suffering and save lives, the hasidic community put up road blocks, insisting they would handle this internally through a Beit Din, or rabbinic court. Eventually, one of the mohels (who was responsible for 3 cases and 1 death) was identified and barred from practicing circumcision. However, since many of these religious procedures are performed without any civic oversight, it is unclear whether even this ban is being upheld.

It is in the context of this experience that I am ecstatic to see the city government finally taking some more substantive action through overall regulation. The DOHMH regulation requires informed consent from the parents before this practice of metzitzah b’peh can be done. That means being told of the risks of HSV infection–including blindness, brain damage, hospitalization for weeks, and death. I wholeheartedly agree with the idea of informed consent and regulation of this practice, but actually feel this does not go far enough. The regulation, despite how it might appear from the vigorous negative response from the orthodox community, lacks teeth. A mohel who performs this practice will only be investigated when a case of HSV is brought to the attention of the health department. And the punishment? A sternly-worded letter, a warning. No revoking of licenses, and certainly no arrests.

Not all physicians agree with the DOHMH decision, and feel it does too little:

Indeed, some panel members said they believed that requiring consent did not go far enough. “It’s crazy that we allow this to go on,” said Dr. Joel A. Forman, a professor of pediatrics at Mount Sinai School of Medicine.

I agree with Dr. Forman[2] and the many other physicians who recognize this procedure is exceedingly hazardous to an infant’s life. It should not be allowed to continue. Moreover, some orthodox rabbis also agree and go farther still:

“There is no requirement to make metzitzah b’peh. The Talmud says plainly it is not part of the ritual but belongs to the medical, post-surgical component,” said Rabbi Moshe Tendler, a medical ethicist and a dean of Yeshiva University’s rabbinical school, where he teaches fourth-year students about circumcision. Tendler, who has a doctorate in microbiology, said, “There is no doubt that insistence on metzitzah b’peh is wrong. I firmly believe that making metzitzah b’peh is a criminal act.”

With this last statement, I wholeheartedly agree. Based on my experience with my patient—seeing the devastating end result of this infection, seeing the way that the city was barred from investigating the cases, seeing the way the parents didn’t even seem to care that their obstruction was possibly affecting other infants—I believe that this practice needs to be outlawed. More specifically, as a clear and present danger to the children of the Jewish community, it should be illegal. Should an infant contract an infection due to a mohel’s performing this practice, that should be considered assault. An infant’s death from infection secondary to this practice should be considered manslaughter. The guilty party would be the mohel. And should the parents block investigation, as with any criminal investigation they could be considered liable—for charges of obstruction of justice, accomplice charges, I’m not sure of the correct legal terminology. But if this practice is handled as a criminal act, there could be legal consequences for them.

I am aware this is possibly trampling on religious freedom. I am aware this is a slippery slope, where if we can claim this practice is dangerous, what else can we claim? What other practices can we outlaw? But a practice that has devastated the lives of 11 infants and killed 2 just in New York City, let alone others around the world, cannot be allowed to continue. And an injunction or ban without legal consequences is useless. And along with punishing the mohels, legal consequences should have the potential to impact the families. Any law that does not do this, that does not cut off demand as well as supply, will likely not be effective.

Let me be clear—I am not in favor of a ban on circumcision. I am not even in favor of a ban on the practice of bloodletting during circumcision—this can be done using a sterile glass pipette in a way that is not a risk to the infant. It is only the specific practice of metzitzah b’peh, where the mohel puts his mouth on the infant’s genitals and in so doing exposes defenseless, innocent infants to the risk of death, that I feel should be outlawed.

As physicians, our obligation is to ‘first do no harm’. Not ‘first do no harm only when it is easy, convenient, and in keeping with religious and social norms’. The DOHMH regulation is a start, but only a start. The practice of metzitzah b’peh needs to be complete cut out… pun intended.

  1. Do I need to…ummm…spell it out…? The pictures in this link should be clear enough.  ↩

  2. A disclaimer: Dr. Forman was my program director during my pediatric residency at Mount Sinai, so I am a bit biased.  ↩

An Overreach on Overprescribing

A recent article by Jane Brody earlier this week in the New York Times discussed the overuse of an antibiotic group called fluoroquinolones. While she had the right idea, I think her approach and some of her data are at best flawed and at worst downright fear mongering. And while I certainly have a number of specific concerns about this article, they represent a more troubling broader tack being taken by popular press coverage of the phenomenon of antibiotic resistance and antibiotics in general.

Fluoroquinolones were originally created for use against hospital-acquired bacteria, especially antibiotic-resistant gram-negative bacteria. Their use, as Ms. Brody correctly points out, has now spread to more benign locations and situations. The group as a whole is one of the most popular antibiotics for use in community-acquired pneumonia, and it is also extremely popular as a treatment for sinusitis. For my part, as a practicing pediatric infectious disease physician, I use these agents only when a patient is allergic to, or their infection is resistant to, a penicillin-based antibiotic; I also use them when broadly effective oral treatment is required. Indeed, one of the advantages of fluoroquinolones, and why they are used so often in the outpatient setting, is that they are extremely well-absorbed when taken by mouth. They give blood levels nearly equivalent to those seen when administered by IV, which in certain infections can be very useful. All of that said, there is no reason to use them as any sort of routine outpatient or inpatient therapy and most guidelines agree that they are second-line drugs, in essentially all settings.

Ms. Brody recognizes all of this and argues for the decreased use of this class of antibiotics. But then she goes beyond that and attempts to argue that not only shouldn’t fluoroquinolones be used as they currently are, but she implies it is tantamount to malpractice to use them. Now, I grant that she does not use those words, but she points out numerous studies that she feels are strong evidence for problematic fluoroquinolone side effects and argues that physicians should know about these studies and not prescribe fluoroquinolones because of them. She also references the existing black box warning on the drug label (it causes tendinopathy) and says that doctors rarely discuss side effects and black box warnings with their patients.

And so, here is where I will now begin to pick apart and dismantle her article, starting with that near-final point of hers.

First, as a physician, I am offended by that offhand comment about warnings and side effects. I and nearly all of my current and former colleagues always inform patients of pertinent side effects or black box warnings on drugs we prescribe. Always. To offhandedly insinuate otherwise, especially while implying ignorance, is obnoxious and ignorant. Moreover, her handling of her so-called evidence, is shockingly unscientific and inaccurate.

Second, she presents a single patient with bizarre diffuse symptoms that are blamed on fluoroquinolones–as physicians we are (and even as a science journalist she too should have been) trained not to simply believe an isolated case–a study with an “n” of 1, as in only 1 patient participating in the study. This is simply not valid data and to include it is dishonest.

Third, she references one article that claims increased retinal detachments while on fluoroquinolones. The paper is solid and the data is good and is believable. However, the authors themselves state, while they had statistical significance, the clinical impact was very low because while the background rate of retinal detachments was 0.6%, even patients on fluoroquinolones had only a ~3% rate. tendinopathy or the neurologic issues now on the black box warning are both significantly more common. Why Ms. Brody spent time even discussing this eye issue and did not focus more on the things we know to bad about the drugs, is beyond me.

Fourth, the other major article she cites discusses the role of fluoroquinolones in inducing C diff diarrhea. She seems to claim that the article shows that fluoroquinolones are more likely to cause C diff than other antibiotics. This is false. A bit of a diversion on C diff: essentially, this is a secondary bacterial infection that is induced by antibiotics, causing overgrowth of a particular pathogenic bacteria. It is a real entity and is caused by a large number of antibiotics; and it is increasing in incidence. The major issue I take with the paper she cites is that during the time the authors were studying this connection, fluoroquinolone use was indeed rising but was the C diff due to this? Or were both rising for other reasons that could confound the results—an increase in hospitalized patients, for example. This effect by confounding is extremely likely in this case. And because the thrust of the article was that as fluoroquinolone use rose so did C diff, the point they argued was simply that this antibiotic too can cause C diff, so watch out. But there is no reason at the moment to suspect fluoroquinolones are any better or worse at inducing C diff than many, many other antibiotics. This work should not have been cited as it is not about a specific fluoroquinolone problem.

Finally, her tone throughout the article is one of alarm or emergency, as opposed to thoughtfulness, teaching, learning, or any combination thereof. The way to spread news to the NY Times readership is not through fear–it’s through news! I feel like Ms. Brody is peddling her wares differently and as a result ends up (hopefully unintentionally) masking the real truth. Because, the real reason not to use fluoroquinolones is not just that they are too broad but also they are not good , effective drugs! Bacteria can become resistant to almost any fluoroquinolone by a single mutation and this mutation does not seem to confer a survival disadvantage on the bacteria. They are also horrible drugs as a group for treatment of Staphylococcal infections, though many community practitioners do not seem to be aware of this and use them, with numerous clinical failures that we, the ID specialists, need to then fix.

My point is simple: I am not a pharmaceutical apologist and I recognize more than many that antibiotics are overprescribed—it’s my job to tell people when not to use antibiotics as much as it is to advise them on which to use. However there are many good reasons to not use the fluoroquinolones, some of which I have touched on here: tendinopathy, easy resistance, high rate of clinical failure against certain bacteria. For a journalist to cite bad studies or use anecdotal data to support her claim against an antibiotic not only undermines those claims, it undermines even the existing true data about the drug, as some physicians will begin to doubt all the data and may even prescribe the drug more.

But of course, for patients—the true audience for Ms. Brody’s piece—all they will read is the side effects and the personal tragedy and they will start to refuse fluoroquinolones at every turn, out of fear. They may trust their physician less because of her comments regarding proper warnings. They may begin to refuse all antibiotics, even when appropriate. None of these outcomes is a good one. Patients should be informed, but not at the expense of a productive therapeutic relationship with their physicians; not at the expense of appropriate treatment.

The hippocratic oath is often paraphrased as “first, do no harm.” Ms. Brody’s piece has, I fear, done a vast amount of harm; for her, for the reputation of her employer, and most important for the patients we physicians try, desperately, to serve, even in the face of unfortunately careless reporting.

In Memoriam

Today’s post isn’t about medicine, or infections, or antibiotics; rather, it’s about children.

11 years ago today, a horrific act of terror robbed the world of almost 3,000 people. Those women and men were mothers and fathers to children who will never again see the face of one of their parents. That is a truly grievous thing; and yet, time not only heals all wounds but it also clouds the memory, especially in the very young. A little girl may have already forgotten what her father’s voice sounded like; a little boy can’t quite recall his mother’s eye color. And so they are able to move on.

But while not all of those who died on 9/11 were parents, they were all somebody’s child. And for the victims’ parents, old or young, those who lost a child on 9/11, their minds are not so easily redirected. They will remember far, far longer and far more acutely the details of their grown (or even not so grown) children who died that day. As a parent, to think of it is more than one can bear. To experience it must be another thing entirely. That is why I was so struck by Joe Biden’s speech.

As covered very nicely by David Kurtz in a piece on, Joe Biden suffered the agonizing loss of his wife and daughter as a 30-year-old man, younger than I am. And yet despite every probable and possible urge to just stop and give up, he kept right on going with life. So when he spoke today to the families of the victims of United Flight 93, he spoke not just as a Vice President offering words of mourning, he spoke as a fellow survivor. He spoke as someone who knows exactly what his audience is going through and has himself lived exactly what he is talking about. Nobody should have to mourn the death of a child, but if they do, I think Joe Biden’s words would be awfully helpful. As he says in the speech, “My personal prayer for all of you is that in every succeeding year, you’re able to sing more than you weep.”

Let’s all go learns some songs.

Now the speech:

[I]t’s an honor — it’s a genuine honor to be back here today. But like all of the families, we wish we weren’t here. We wish we didn’t have to be here. We wish we didn’t have to commemorate any of this. And it’s a bittersweet moment for the entire nation, for all of the country, but particularly for those family members gathered here today.

Last year, the nation and all of your family members that are here commemorated the 10th anniversary of the heroic acts that gave definition to what has made America such a truly exceptional place — the individual acts of heroism of ordinary people in moments that could not have been contemplated, but yet were initiated.

I also know from my own experience that today is just as momentous a day for all of you, just as momentous a day in your life, for each of your families, as every September 11th has been, regardless of the anniversary. For no matter how many anniversaries you experience, for at least an instant, the terror of that moment returns; the lingering echo of that phone call; that sense of total disbelief that envelops you, where you feel like you’re being sucked into a black hole in the middle of your chest.

My hope for you all is that as every year passes, the depth of your pain recedes and you find comfort, as I have, genuine comfort in recalling his smile, her laugh, their touch. And I hope you’re as certain as I am that she can see what a wonderful man her son has turned out to be, grown up to be; that he knows everything that your daughter has achieved, and that he can hear, and she can hear how her mom still talks about her, the day he scored the winning touchdown, how bright and beautiful she was on that graduation day, and know that he knows what a beautiful child the daughter he never got to see has turned out to be, and how much she reminds you of him. For I know you see your wife every time you see her smile on your child’s face. You remember your daughter every time you hear laughter coming from her brother’s lips. And you remember your husband every time your son just touches your hand.

I also hope — I also hope it continues to give you some solace knowing that this nation, all these people gathered here today, who are not family members, all your neighbors, that they’ve not forgotten. They’ve not forgotten the heroism of your husbands, wives, sons, daughters, mothers, fathers. And that what they did for this country is still etched in the minds of not only you, but millions of Americans, forever. That’s why it’s so important that this memorial be preserved and go on for our children and our grandchildren, and our great-grandchildren, and our great-great-grandchildren — because it is what makes it so exceptional. And I think they all appreciate, as I do, more than they can tell you, the incredible bravery your family members showed on that day.

I said last year my mom used to have an expression. She’d say, Joey, bravery resides in every heart, and someday it will be summoned. It’s remarkable — remarkable — how it was not only summoned, but acted on.

Today we stand on this hallowed ground, a place made sacred by the heroism and sacrifice of the passengers and the crew of Flight 93. And it’s as if the flowers, as I walked here, as if the flowers were giving testament to how sacred this ground is.

My guess — and obviously it’s only a guess; no two losses are the same. But my guess is you’re living this moment that Yeats only wrote about, when he wrote, pray I will and sing I must, but yet I weep. Pray I will, sing I must, but yet I weep.

My personal prayer for all of you is that in every succeeding year, you’re able to sing more than you weep.