Chickenpox parties–just a Facebook friend away

I’ve written a few times about chickenpox parties. The first link refers to a magazine article describing the practice; the second, a few years later, about a Craigslist ad looking to hold such a party “at McDonald [sic] or some place with toys to play on.”

Clearly, as chickenpox cases have become more rare in recent decades due to the success of the chickenpox vaccine, moving toward social media to find infections is the way to go. It allows people to find such cases and expose their immunologically naive children to a serious virus, just as easily as googling Jenny McCarthy Body Count.” But now, it’s gone even farther, with parents on this Facebook page hooking up to not only find cases/parties, but also to ship contaminated samples through the mail:

Shipping any kind of microbial specimen is a huge pain in the rear, specifically because they have the potential to cause harm. Myself and any employees who do this shipping have to be specially trained, and we have to use a number of specialized shipping containers to mail samples, and take precautions to prevent any leakage etc. out of the packages. Yale has a nice overview of shipping specimens at the link–54 pages long. We also have to apply for permits to ship many of these organisms. Now, Varicella zoster (chickenpox) isn’t on their list as far as “select agents,” but secretions from a person thought to have or diagnosed with chickenpox would be considered a category B agent (moderate risk of harm):

Biological substances, such as diagnostic or clinical specimens from humans or animals that are known to harbor a pathogen or have a high probability of containing a pathogen.

How should you package these?

Triple packaging. Must pass a 1.8 meter or 4 foot drop test. Packages shipped by air must meet a 95 kPa or 14 psi pressure test of primary or secondary container.

You can see pages 10-11 of the pdf for more instructions. This isn’t as easy-peasy as “stick it in a Ziploc baggie.” These people are putting a dangerous substance in the mail with the possibility (remote, but there) of making people sick. What if your mail carrier had never had the chickenpox or the vaccine? What if s/he is immunocompromised in some way? These people are taking all the dangers of their “chickenpox parties” and putting them in the mail system. Thank you, Andrew Wakefield and Barbara Loe Fisher.

Now, to be generous, their information page has been changed since the story came out to note “ABSOLUTELY NO SENDING VIRUSES THROUGH THE MAIL. This will not be tolerated and will be deleted immediately. Local only.” However, c’mon–people still have messaging on Facebook and I doubt that’s really going to stop the determined ones. These people simply don’t care about anyone but themselves and are in denial about the fact that chickenpox can kill–the one woman who received samples didn’t even know the name of the person they were from. This is so many levels of irresponsible I don’t even know where to begin.

Finally, not surprisingly, they’re deleting any comments that run counter to their propaganda. I replied to a few comments noting that the link between chickenpox and subsequent Streptococcal infection, for example, and it was gone within 20 minutes. I also noted that both my grandmother (shingles which led to pneumonia) and an uncle I never knew (primary chickenpox followed by pneumonia when he was only a year old) died from Varicella infection. The virus isn’t a joke, and those of us who had it, like me, are at a much higher risk of developing complications via reactivation (such as shingles) than those who obtained immunity via the vaccine. I wish the vaccine had been available when I was a kid, and I am frustrated as hell that these types of “parties” still exist in the vaccine era.

[Update: at least in Tennessee, a US prosecutor is warning that these types of mailings are illegal].

Epidemiology and social media: conference fail

I have written and deleted this post. Twice. But damn it, it needs to be said.

I’m here in charming Montreal for the North American Congress of Epidemiology. It’s a good-sized meeting, as far as epi meetings go. The site notes that it’s a joint effort between four major Epi organizations: The American College of Epidemiology (ACE); The Society for Epidemiologic Research; the Epi section of the American Public Health Association, and The Canadian Society for Epidemiology and Biostatistics. Collectively, those associations represent a lot of epidemiologists.

The conference started off well. The first night kicked off with a movie about bioterrorism preparedness followed by a panel discussion. Great–movies! Engaging public in novel ways! Love.

On to Wednesday, when the first real sessions begin. The opening plenary discussed Science, skepticism, and society. Great again–this is a perfect warm-up. Later that afternoon, there was another session titled “Communicating Epidemiology: The Changing Landscape”. I was happily surprised when the room for this was pretty packed, as these types of meetings tend to be heavy on chronic disease epi and epidemiology methods. However, I was disappointed with the content. While the first talk was to give “a snapshot of how premier science journals experiment with features that blur old distinctions: blogs, data repositories, standard-setting, and advance online publications,” almost none of that was discussed–instead, it focused on how Nature Genetics was doing…something….about datasets. (Unfortunately I don’t have great notes and was at this point still trying to get the wifi to work; more on that later). Either way, it wasn’t anything as advertised in the description I quoted above, and it discussed *only* Nature Genetics–surely there are more “premier science journals” than just NG? (Why only NG discussed? The talk was by Myles Axton, who is the Editor).

Next on tap was Jennifer Loukissas, communications manager at the National Cancer Institute’s Division of Cancer Epidemiology and Genetics, to discuss “When epidemiologists talk to press and public.” However, there really wasn’t any “public” involved–it was a media training session. Period. Use soundbites, stay on target, think about your message, control the interview, call the journalist back in 5 minutes if you need to collect yourself, etc. Good stuff for scientists to know, to be sure, but isn’t there a world out there beyond talking to journalists? More on that later as well.

The third talk was Jonathan Samet of USC, on “Communicating around conflict.” He’s recently worked on the WHO cell phone-and-cancer opinion that was released earlier this month, and essentially extended what Loukissas began as far as what to and not to say to interviewers, particularly in controverisal areas.

This was not exactly my idea of science communication in 2011, especially since everyone agreed at the beginning of the session that scientists were terrible communicators, our messages frequently ended up getting distorted, all the typical canards. Merely telling scientists to stop being so jargon-y and prepare soundbites–while necessary–isn’t going to solve these problems.

During the (very brief) Q&A, I asked about scientists directly communicating with the public–via their websites, blogs, web video, etc., to get their own message out there and not have to worry about journalists messing it up. Loukissas was the main one to answer the question, saying–incredibly–she hadn’t thought about that.

It was all I could do to keep myself from saying “d’oh!,” complete with facepalm.

The reality is that scientists don’t have to be passive any longer, relying only on reporters to translate their work for them in order to send it along to the public. We should have our soundbites, but realize that we can go beyond our manuscripts (I’ve had ones recently trimmed down to 1200 or even 800(!) words). We can write about the research if it’s behind a paywall. We can write about the realities of doing our work as a jumping-off point after a journalist covers your research, and go beyond the dry data that goes into the paper. We can go beyond the press release and talk about what may be interesting to us about our findings, but maybe aren’t the “meat” of the publication, or are secondary to the “main point” that you’ve worked on for your soundbites and want to emphasize to interested journalists. We can elaborate on interesting research done by others, to discuss subtleties that you can’t fit into a 20-minute interview.

And more.

Communication-wise, this meeting has unfortunately been a bit of a letdown. The science is interesting and there have been some great speakers, but I haven’t been able to share much of that because wifi wasn’t arranged for in the conference rooms. I have internet in my room ($14.95/day, of course), but the password from my hotel room isn’t valid downstairs (something it took me almost a day and a half to find out, after getting the run-around from various people), and the organizers either didn’t care, didn’t think, or couldn’t afford to allow attendees to use the wifi network in the hotel conference rooms. So while I was able to take conference notes from the American Society for Microbiology meeting right on Twitter and share them with everyone via the conference hashtag, not so for this meeting. (ASM even had their own mobile app for smartphones).

The thing is, *epidemiologists need to be plugged into these kinds of things.* So many of the studies reported in the media have to do with epidemiological topics–cell phones and cancer, vaccines and autism, “chronic” lyme, does the internet really give you “popcorn brain”, just to take one current story from CNN. We can’t sit in our towers and just wait for a journalist to call us about those studies anymore–and why should we?

Last year, Craig McClain wrote about why scientists need to use Twitter. That post, while good, focuses mainly on the benefit to the scientist (though he does note that the public can also find information there). We need more of this. We need good, reliable information to be out there on the internet, freely available–and if that’s not possible in your academic publishing model, it’s still possible with a blog, or YouTube video, or basic website that you keep updated with recent news. Epidemiologists are certainly using social media and Google to explore disease; why not give back by wading out there and actually taking part in the conversation?