A conversation with Anne Geddes about meningitis, vaccines and her remarkable photo series of meningitis survivors
Next week, the CDC’s Advisory Committee on Immunization Practices will decide whether to recommend the MenB vaccine, which protects against the B strain of meningococcal disease. Strains A, C, W and Y are already covered in current vaccines. Over at Forbes today, I wrote about some of the issues – mainly cost and the rarity of the disease – the CDC will consider. But I also wrote about the efforts of photographer Anne Geddes in raising awareness about meningococcal disease. Yes, THAT Anne Geddes – she of the adorable babies in flower petals and pea pods, “under the sea” and posing as acorns.
I admit I jumped at the opportunity to interview Anne Geddes. (You can watch the complete interview – and get a sense of how I interview folks – in the video below.) After all, I love photographing babies too! But there was another reason I was thrilled to interview her: we have shared a common photography subject, one of the amazing survivors she photographed for her awareness project Protecting Our Tomorrows: Protecting Against Meningoccoal Disease, which she describes here.
Jamie Schanbaum, whom I mention at the beginning of my Forbes piece, was a student at the University of Texas at Austin when she developed meningitis, which led to seven months in the hospital and loss of both legs and all her fingers. I met her while doing my graduate degree in photojournalism because I wanted to photograph her for my thesis, which, you’ll be completely unsurprised to find out, was a series of visual and written stories about families and individuals affected by vaccine-preventable diseases. One of those stories I’ve written about before on this blog, that of Nicolis Williams, who did not survive meningitis.
My photojournalistic, candid style is quite different from Anne’s gorgeously crafted portraiture, but both of us captured Jamie’s spunk, strength and intensity. She’s a hell of a survivor, having gone on to win paralympic events in cycling. You can see the images both Anne and I shot here, as well as some other survivors Anne photographed that she gave me permission to include. You can see the full series and some great behind-the-scenes images at this Tumblr.
In addition to interviewing her and Dr. Leonard Friedland from GSK (one of the pharma companies that manufactures a MenB vaccine and which supported Geddes’ photo series.), I wanted to hear what drew Anne to do the series and how she approached it. When I told her we had both photographed Jamie, she told me how her image of Jamie came to be: Read the rest of this entry »
There’s a new study out finding that breastfeeding reduces the risk of childhood leukemia. It’s a meta-analysis, which means it pools together the findings from a dozen and a half different previously published studies. I’ve gone through the details on the numbers below, but I’ve written about the more important issues tied up with this study over at Forbes. Why write about it in two places? It was far too lengthy to cover the problematic aspects of a study like this in social terms as well as the problems in the study itself. So I go over the findings and problems in the study itself here, and I discuss the implications of this study at Forbes, which I hope you’ll read.
But I will give you the spoiler summary: studies like these, especially when they do not really provide any new information (as this one does not), are most commonly used as weapons, even if not intentionally, on women who do not meet the breastfeeding recommendations. It’s yet another study telling us “breast is best” but without providing the social support and the resources that are absolutely essential to successful breastfeeding. And for those moms who cannot breastfeed – regardless of the reason – studies like this make them feel even more inadequate than their physicians, neighbors, fellow moms and the rest of society often already have, an issue Suzie Barston, author of Bottled Up and blogger at Fearless Formula Feeder, regularly addresses.
So, what about this study? It’s honestly nothing new. And as Barston points out on my Forbes post, it’s riddled with the same problems as past meta-analyses (and plenty of past breastfeeding studies in general). The study is a meta-analysis and systematic review, which means the authors, a couple of researchers from the University of Haifa School of Public Health in Israel, searched for all the studies on breastfeeding and leukemia risk that they could find across three large research databases (PubMed, the Cochrane Library and Scopus) and then analyzed the findings together. They only include case-control studies. In this study type, researchers identify a certain number of leukemia cases and then match these to controls, children with similar characteristics who did not develop leukemia. Then they compare the breastfeeding histories of all the children. For this study, the authors found 18 studies published between 1960 and 2014, involving more than 10,000 children with leukemia cases and more than 17,500 matched children without leukemia. (Three previous meta-analyses, all of which contained studies that overlapped with those in this study, found similar results as this one did.) Read the rest of this entry »
With summer nearly upon us, the bugs already are upon us in most of the U.S. My sons both came home from child care yesterday stinking of Deep Woods Off, but I knew it was better than the alternative – bite-speckled skin that would be scratched open for the next month and likely leave scars. Still, the smell was awful, so I’m exploring other effective bug spray options, and friends on Facebook directed me to the recent Consumer Reports ranking. For the most part, the article is very helpful, and I’ll be checking out some of the products they rank highly. But I was disturbed by the article’s implication that DEET was unsafe. It doesn’t outright say that, but it’s implied, and the side effects mentioned only apply to very high concentrations that the average person is very unlikely to use. So that reminded me of the post run last summer on the safety of bug spray ingredients. I’ve updated and revised that fantastic guest post by Matt Shipman. The references are at the bottom, but I’ll link to them within the text soon!
It’s estimated that no living creature on earth has caused more deaths (besides man) than the mosquito. From yellow fever to malaria to West Nile virus to dengue fever to various forms of encephalitis, mosquito mommies have left a devastating impact on humanity. Fortunately, most of these diseases are no longer threats in the U.S., but West Nile returns every summer to some degree, and dengue fever has been arriving in parts of the South. In 2012, 5,674 people contracted West Nile virus, of whom 286 died. Around 1,500 people are diagnosed with malaria every year in the U.S., though these are nearly all cases in people who have returned from traveling abroad. And it’s not just mosquitos that cause harm: More than 19,000 people have contracted Lyme disease every year since 2004. Even if children don’t catch a disease from a bug bites, they can suffer allergic reactions, and the itching can lead to scarring or skin infections, such as impetigo.
The two chemical compounds that show the greatest effectiveness in warding off mosquitos and other six- and eight-legged critters are DEET and picaridin. Neither is 100% effective (even though they’re EPA-approved), but they are pretty good at keeping blood-sucking arthropods at bay, and, consequently, they are the best (and most common) active ingredients used in U.S. mosquito and tick repellents. It’s not entirely clear how DEET, developed by the U.S. Army in the 1940s, works, but the most recent findings suggest insects sense it and then avoid it, perhaps because it confuses how they smell things – the blood-feeders don’t respond to odors that would normally trigger feeding behavior. It might also disguise human scents enough to throw bugs off the trail, but that’s less certain. The mechanism for picaridin, available since 2005 in the U.S., is even more a mystery. We just know it works.
Okay, fine, it keeps the mosquitos away – but at what cost? Well, bug repellents are not totally harmless, but they are probably less harmless than a lot of scare-mongering online would have you believe. Before we dig into the research, remember, the dose makes the poison. That means following the instructions regarding both amount and application on the insect repellent packaging, which is regulated by the EPA. The EPA has a fact sheet on proper use of DEET-containing products, such as not applying repellent on or near the hands or mouths of young children, near the eyes or mouths of anyone, or on cut, irritated, or wounded skin. It should also be washed off once you’re away from the bloodsuckers, especially if you’re using it over several days (such as on a camping trip).
But onto the safety information. Both DEET and picaridin have been approved for use on all children with no lower age restriction. Based on the available toxicological data, both chemicals have low acute toxicity, and normal use of both should not present a health concern to the general U.S. population, including children, as long as the label directions are followed. For instance, a 20% picaridin product should not be applied more than twice per day to adults or children. The effectiveness of both DEET and picaridin appears to last three to seven hours, though up to 25% DEET has been necessary to last the longer duration. Read the rest of this entry »
The first comprehensive, nationally representative study on what treatments children are receiving for ADHD was published a few weeks ago. The findings are especially important because they are based on data collected in 2009-2010, the year before the AAP published its policy statement on ADHD treatment, so we have an excellent baseline to compare against future studies. I wrote about the research at Scientific American, and I hope you’ll read that piece, so I won’t go into the details here, but here are a handful of the key findings:
- Medication alone was the most common treatment for children with ADHD in 2009-2010.
- Almost 1 in 2 preschoolers (ages 4-5) with ADHD received behavioral therapy, but 1 in 4 only received medication.
- Less than 1 in 3 children (ages 6-17) with ADHD received both medication treatment and behavioral therapy.
- 9 out of 10 children with ADHD were treated with medication and/or behavioral therapy, both of which are recommended ADHD treatments (which means 1 in 10 did not get meds or therapy).
- About 1 in 10 were taking dietary supplements for ADHD, which are not currently recommended to treat the developmental disability.
Also, as I wrote at Scientific American, it was reassuring to see that black and Latino/a children and low-income children tended to be more likely to receive behavioral therapy than white children. It’s not often that you find better access to care among minorities and lower income households, which is why I wrote the story for SciAm in the first place.
But what treatment *should* your child receive if they’ve been diagnosed with ADHD? Well, here’s a handy set of infographics to make it simple, compliments of the CDC. If you’d like to read a summary to learn more about what the CDC study found in plain language, check out the Key Findings here. You can also learn more about the specifics of your state in these measures at this interactive map on the CDC site. The state profile of Texas, for example, tells us that 75% of kids had taken meds for ADHD in the previous week when surveyed, and a third had received behavioral therapy within the past year. Read the rest of this entry »
The measles outbreak that began at Disneyland in December is officially over, the CDC reported last week. Between that announcement and this week’s European Immunization Week and National Infant Immunization Week in the U.S., it’s an opportune time to reflect on what the winter measles outbreak might mean in a broader social context in the U.S. As a high-income country with a comparatively well-developed health infrastructure and a Vaccines for Children program that ensures low-income children can get all their recommended vaccines, the biggest barriers to vaccination here are less often logistical or financial ones so much as they are psychological and ideological ones. Measles may be contagious, but, in a way, so is vaccine hesitancy. But just as containing a measles outbreak is exhausting, challenging, and complex, so is addressing the many concerns parents may have about vaccines.
The outbreak made a couple of things undeniably apparent: the small pockets of low immunization coverage that have begun to proliferate here and there throughout the U.S. – even if overall national immunization coverage rates have remained very high – really do pose a risk to the rest of the country. Although the majority of those who became sick with measles were unvaccinated, many of them had not received the vaccine because they were too young – babies who are more vulnerable to the serious complications measles can cause. Others had received the vaccine, but measles is so infectious that even a vaccine that works 95 to 98 percent of the time cannot protect everyone when an outbreak occurs.
Fortunately, no deaths occurred in the outbreak, which makes sense given the total number of cases and an estimated risk of death in 1 out of 1,000 to 2,000 measles cases (depending on how you calculate it and various factors influencing the rate). But media reports and social media postings of hospitalizations appeared sufficient to bring many parents into doctors’ offices to get their children the MMR (which was found once again this week not to increase the risk of autism spectrum disorders). It’s too soon for any studies to have scientifically assessed how the outbreak influenced parents’ attitudes or kids’ catch-up visits or families switching from not vaccinating to vaccinating, but anecdotal evidence from dozens of doctors I spoke to and in media reports implied that the outbreak hit home for a lot of parents who finally realized the threat measles can pose when immunization coverage drops in local communities.
On the other hand, the outbreak unleashed the fury of those parents who had previously comprised the silent majority: the ones who vaccinated their children according to the CDC schedule, who recognize the safety and effectiveness of vaccines, and who are fed up with the increasing risks posed by parents choosing not to vaccinate. It is reasonable for a person to have the right to choose what risks they want to take on for themselves and their families with medical interventions, but how do we balance that risk against the right of others not to get ill from a disease that can cause far more damage than the vaccine that can prevent it? That was the question that raged (and still does) in headlines, op-eds, blogs, comment threads, social media, and parenting groups. Read the rest of this entry »
Yesterday, April 12, marked the 60th anniversary of the announcement that Jonas Salk‘s inactivated polio vaccine was “safe, effective and potent.” It’s somewhat difficult to imagine today the kind of effect that news had. I’ve written about that day and the days leading up to it – and the tragic days that followed a few weeks later with the Cutter incident – over at Forbes, which I hope you’ll check out.
In the meantime, I’ve pulled together a couple images, all in the public domain, from that time that show just how monumental the moment was.
For more images, check out the photo gallery at the Academy of Achievement website
Welcome back, Brontosaurus! An opportunity to explain the scientific process to your dinosaur-loving kids!
Remember how heartbroken you were when you found out they demoted Pluto? Well, a new investigation of paleontological evidence might just make up for it… Brontosaurus is back! A massive 300-page study in the open-access journal PeerJ has made the case that Brontosaurus should once again become its own genus, distinct from the genus Apatosaurus. Rather than summarizing the tortured history of the massive sauropod, I’ve included an infographic below with the timeline of Brontosaurus’s discovery, re-extinction, and now its return.
The short version is that in the mad rush to discover new species of dinosaurs in the late 19th and early 20th century, there was sometimes confusion about whether a specimen was new or simply another individual of a species already discovered. The first Brontosaurus, or “Thunder Lizard,” was found and named in 1879, but just a few decades later in 1903, it was determined that the two species of Brontosaurus were not different enough from the species of Apatosaurus that had been discovered, so the former were folded into the genus Apatosaurus. The genus Brontosaurus then ceased to exist since Apatosaurus had been named first. (There is much more to the story, which is worth learning if you’re going to discuss this with your children. You can read a more detailed version of the story in the study’s press release, though be warned that the press release is a little over-the-top.)
Fast forward to today: Without getting into the weeds too much, three researchers – Emanuel Tschopp, Octávio Mateus, and Roger B.J. Benson – examined all the evidence available on the bones of dinosaurs in the family Diplodocidae to find commonalities and differences in the morphology (an organism’s structure) of different specimens. To say they were thorough would be an understatement. When I sent the paper to paleontologist Dana Ehret, Curator of Paleontology for the Alabama Museum of Natural History, to confirm that it was legit, his first line in his email back to me was “This paper is a monster!” That’s a good thing – it’s just under 300 pages long. And again and again in the evidence they reviewed, the Brontosaurus emerged as its own unique genus. So then they took the traits of the bones they identified as grouping together as Brontosaurii and determined what characteristics make up the now-resurrected genus Brontosaurus. Read the rest of this entry »
We’ve had a bad run of illness in the past several weeks, and that’s meant measuring out acetaminophen, ibuprofen, an antihistamine, an anti-nausea medication, an oral steroid, and a medication for reflux at different times for one kid or the other. In the midst of all this, a mistake was bound to happen, and it did. We’ve gotten pretty good at communicating between ourselves and others who watch our children regarding whether and when a dosage has been given, therefore avoiding a double (or triple!) dose. But the bottles look alike and the labels don’t always specify what symptoms the medication treats. So my youngest was given 5 mL of his reflux medicine — except he’s only supposed to get 1 mL of it; it was mistaken for the steroids he was prescribed (which he does get 5 mL of). So he ended up with five times the dosage he was supposed to get for the reflux meds. Fortunately, a call to the nurse line and then poison control let us know he would be fine and that we didn’t need to take him to urgent care to get his stomach pumped.
But other kids aren’t so lucky. I reported last fall on a study in Pediatrics which found that medication errors outside of a medical setting are incredibly common – on average, they occur every 8 minutes. While the vast majority are like ours, not requiring medical treatment, a small percentage do required critical care, and even more rarely, some result in death. Another study found that more than 70,000 children a year end up in the emergency room because of an accidental overdose, and two of the most common reasons are incorrect measurement and using the wrong measuring device. A new policy statement from the American Academy of Pediatrics aims to address at least part of that problem by encouraging all medication measurements to be prescribed in metric, specifically in milliliters, or mL.
I wrote about this policy statement at HealthDay already, so here I’ll just hit the highlights, and they’re really pretty straightforward: no more teaspoon of this or tablespoon of that. Now it’s all milliliters, preferably using a syringe (which usually comes with the medication), and only using one of those small measuring cups if a syringe isn’t available. Here are the key recommendations:
- Exclusively use milliliters and exclusively use “mL” as an abbreviation
- Don’t have any measurements except mL on a dosing device
- Round to the nearest 0.1, 0.5 or 1 mL
- Use a zero before the decimal (0.1 instead of .1) but no zeroes after the last digit after the decimal (0.5 instead of 0.50) to avoid giving ten times the dose
- Frequency of dosage should be clearly described on the label
Another of the recommendations actually would have prevented the error that occurred at our house if we had kept each syringe with its respective medication. The recommendation that pharmacies, hospitals and health centers should distribute appropriate-volume dosing devices also suggests, “When possible, dosing devices should not be significantly larger than the dose described in the labeled dosages to avoid twofold dosing errors.” The syringe that went with the reflux meds only went up to 2 mL. The larger syringe for the steroid medication went up to 5 mL. Of course, ours was a fivefold error rather than a twofold one, but had we kept the right syringe with the right medication, it would have been impossible to give him five times the dose.
These new recommendations are not all that new. Many practices, such as that of Dr. Roy Benaroch (whom I quoted in the article and who blogs at the highly recommended Pediatric Insider), have already been exclusively using metric. But by publishing this official statement, the AAP hopes to standardize this practice across the U.S. and banish the teaspoon (which was often just a kitchen spoon, varying in size and volume) as well as a large proportion of the medication dosing errors that occur each year. This practice won’t eliminate all those errors. But it has the potential to cut out a huge chunk of them if doctors fulfill their role in educating patients and parents, and parents are conscientious about measuring. At the very least, we’re one step closer to using the same measuring system that every other country on the planet uses.
As I wrote about at Forbes today, PBS Frontline aired an updated version of their 2010 documentary “The Vaccine War” last night, including information about the current measles outbreak that started at Disneyland and the legislative effort in California to roll back personal belief exemptions for vaccines that allow parents to opt out of getting recommended vaccines for school attendance. During the show, discussion on Twitter followed the hashtag #VaccineWar. Most of those participating had been invited to do so by the digital content manager at Frontline.
I had also been invited to participate, but I declined. For one thing, spending my time, unpaid, to provide free marketing to a documentary airing on a publicly funded medium is inappropriate in my opinion. But above and beyond that, the email invitation mentioned that PBS Frontline was seeking people “from all sides” of the issue. So I asked for clarification about what that meant. The first response was not specific enough, so I spelled out my question in my second email: “I’m sorry to belabor the point, but I’m still not clear on what kind of diversity you have invited. I suppose I should be more blunt. Have you invited people who explicitly believe that the risks of vaccines outweigh the benefits? Have you invited [list of four known anti-vaccine activists who propagate misinformation] or similar individuals?”
I received the following response: “I guess my email wasn’t to the point enough. Yes! We are looking to include more people who specifically believe that the risks of vaccines outweigh the benefits. We are still reaching out and adding to our list.”
Those who follow my work know my deep concerns with false balance in the media on scientific issues. Therefore, I wrote the following response back:
“Thank you for the clarification. I will have to decline participation in the event because it sounds as though it will be counterproductive and confusing to parents who see it, and I am not comfortable in participating in something that can cause damage to public health. You mentioned in your original email that you were seeking informed discussion on Twitter about the film, but specifically seeking individuals who hold a non-science-based belief that is counter to the evidence to participate would not lead to an informed discussion. It will only lead to the confusing back-and-forth “debate” that further confuses and isolates parents, and that is not something I can participate in in good conscience. I have spent a great deal of my writing discussing the perils of false balance — see the links below — and I will not participate in a program specifically designed to contain false balance. When you present “both sides” as equally valid despite a consensus of scientific evidence on one side and a combination of cherry-picked, misunderstood, non-representative papers or anecdotes on the other side, you do a disservice to parents and to public health. In fact, as Curtis Brainard excellently covered at the Columbia Journalism Review, the media has already played a pernicious role in the current levels of vaccine hesitancy: “Sticking with the truth: How ‘balanced’ coverage helped sustain the bogus claim that childhood vaccines can cause autism”: http://www.cjr.org/feature/
Peer reviewed research has further shown the damaging effects of inaccurate or misleading comments made online which reflect beliefs instead of facts, which is exactly what will be brought by those who believe incorrectly that vaccines’ risks outweigh their benefits: http://www.sciencedaily.com/
The tenor of comments can play a role as well, and when those who refuse to accept the scientific consensus on vaccines participate, the tenor often becomes unpleasant, which can also influence parents’ perception of vaccine science. See: http://www.nytimes.com/2013/
Why Is Katie Couric Promoting Vaccine Skeptics?: http://www.politico.com/
Discussions about vaccination have always been fraught, particularly over the past decade, but the tenor of the national discussion has intensified since the Disneyland outbreak this winter has jumpstarted the nation toward what’s likely going to be a record year of cases since measles was eliminated in 2000.
Yet measles cases aren’t going to stop occurring because we’re shouting at one another. Much of the anger and vitriol spewed in both directions is likely only to further polarize the discussion about vaccinations and leave sincerely concerned, confused, uncertain parents in the middle left without any sense of what they should do to protect their children’s health. In fact, many of the misconceptions that exist about parents who don’t vaccinate or delay vaccinations can do as much damage when it comes to “fence-sitting” parents as anti-vaccine misinformation that may lure those parents in when they feel alienated by the “pro-vaccine” groups.
I don’t consider myself pro-vaccine, and I never have. I consider myself pro-science, pro-evidence, and pro-science-based and evidence-based data and information. Now, in one of the most vitriolic settings for vaccine discussions, there is finally a place for parents to get accurate, science-based, evidence-based information about vaccines without risking mockery, snide comments, sarcastic jokes, judgmental advice or any of the other turn-offs that make it difficult for parents just to ask a question: The Vaccine Page.
As the page’s description states, “We have seen a need for a place to come with questions and concerns where parents can trust that they will not be mocked, bullied, criticized or intimidated.” As this attitude is something I’ve promoted for a long time, it won’t surprise any readers here to hear I’m involved with The Vaccine Page. The pretty bluntly named page came out of discussions with three other moms who find the bitterness of vaccine discussions as frustrating and damaging as I do, and we joined together to change that. We recruited one heck of a team, if I do say so myself, that runs the gamut of clinicians, moms, researchers and advocates. And we offer something unique that, to our knowledge, doesn’t exist anywhere else in social media: a page providing accurate information with all disclosures and qualifications, in plain language, without judgment — and we don’t allow others to pile on either. Read the rest of this entry »