Why the CDC’s “7 banned words” is worse than you think

Yesterday, the Washington Post broke a story noting that CDC officials are no longer allowed to use the following seven words: “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based” as part of a larger Orwellian attack on science at large and specific communities and topics more generally.

It’s horrible on its face and not even trying to pretend it’s anything but an attack on science and the most vulnerable among us–forcing out the scientific term “fetus” (clearly to allow for the idea that terms like “baby” should be used instead, in a nod to the anti-choice movement); the poor who receive “entitlements;” minorities and LGBTQIA who are no longer allowed to be referenced by terms like “diversity” and “transgender.” And it attacks the very background of scientific research, taking away “evidence-based” and “science-based” as descriptors for policy recommendations. It’s hard to believe this is real life in the United States and not Soviet-era Lysenkoism.

But what chills me more, even beyond the removal of these words from the CDC’s formal lexicon, is the suggested replacement given for “science” or “evidence-based” is instead: “CDC bases its recommendations on science in consideration with community standards and wishes.”

Soak that up. This opens the door for official CDC documents to support, say, abstinence-based education in conservative areas as a “recommendation based on science in consideration with community standards and wishes.” In other words, not science-based at all, even though many communities support it *despite* the scientific evidence. Or anti-vaxxers in Oregon who believe vaccines are “toxic” to have that now become a CDC recommendation based “on science in consideration with community standards and wishes.”

If this policy is allowed at the CDC, there’s no reason to think this will stay in that agency, either. Imagine all of HHS, NASA, NOAA, the Department of Education, and many others requiring similar definitions of science/evidence-based. It’s programmatic approval of the idea that facts are anything you want them to be.

It’s literally turning “truthiness” into Federal policy.

“War is peace. Freedom is slavery. Ignorance is strength” never felt quite so close to home as it has in 2017.

Vaccine advocacy 101

I recently finished a 2-year stint as an American Society for Microbiology Distinguished Lecturer. It’s an excellent program–ASM pays all travel expenses for lecturers, who speak at ASM Branch meetings throughout the country. I was able to attend Branch meetings from California and Washington in the West, to Massachusetts in the east, and south as far as El Paso, Texas, with many in-between. Each Lecturer selects several topics to speak on, and the Branch chooses from those which they want to hear. Mine included basic research (zoonotic disease, antibiotic resistance) as well as science outreach and advocacy topics (zombies, vaccines).

My talk on vaccines covered vaccine hesitancy and denial, the concerns some parents have regarding vaccination, and the way social media and celebrities contributed to the spread of vaccine misinformation. Inevitably, someone would ask in the Q&A or speak to me afterward inquiring, “But what can I do? I don’t feel I know enough about why people reject vaccines, and feel helpless to combat the fears and misinformation that is out there.” These were audiences of microbiologists and other types of infectious disease specialists–people who are very likely to be educated about vaccines and vaccine-preventable diseases, but who may not have followed the saga of disgraced former physician Andrew Wakefield, or aren’t familiar with the claims of the current anti-vaccine documentary, Vaxxed, or other common anti-vaccine talking points.

To help fill this gap, I recently published a paper in Open Forum Infectious Diseases,” Vaccine Rejection and Hesitancy: a Review and Call to Action.” As the title suggests, in it I give a brief overview of some of the figures in the anti-vax movement and the arguments they commonly use. I don’t go into rebuttals directly within the paper, but the supplemental information includes a subset of both anti-vax literature as well as several published rebuttals to them that interested individuals can look up.

I also briefly review the literature on vaccine hesitancy. Who fears or rejects vaccines, why do they do so, and how might we reach them to change their minds? This is really an area where many individuals, even if they’re educated about vaccines and infectious disease, lack a lot of background. As I note in the paper, many science-minded people still think that it’s enough to just educate people about vaccines properly, and that will be enough. While accurate information is indeed important, for many individuals on the vaccine-hesitant spectrum, it’s not only about misinformation, but also about group identity, previous experience with the health care field, and much more.

Still, vaccine advocates can get involved in a number of way. One of the easiest is simply to discuss your own vaccine history in order to normalize it. I regularly post pictures of my own vaccinations on social media (including my public Facebook and Twitter accounts), and those of my kids*. In over 17 years of parenthood, their vaccinations have all been…boring. These “uneventful vaccination” stories are the ones which rarely get told, as the media focuses on “vaccine injury” stories, in which the injuries may or may not actually be caused by vaccines. Those interested in promoting vaccines can write letters to the editor, get involved with local physicians to speak with hesitant families, break out and be political about vaccine exemptions; there are a number of ways that we can work to encourage vaccination and keep our children and our communities healthy (again, explored in more detail in the manuscript).

Figure 1: Examples of photos posted to the author’s social media accounts. Panel A: The author (middle) and her older children after receipt of seasonal influenza vaccines. Panel B: The author’s youngest child at Walt Disney World, wearing a shirt saying “Fully Vaccinated. You’re Welcome.” Both techniques can serve as conversation-starters around vaccination.

 

I hope this paper will serve as a starting point for those who want to be a vaccine advocate, but just aren’t sure they know enough background, or know where or how to jump in. Whether you’re an expert in the area or not, everyone can do small things to encourage vaccines and demonstrate your trust in them. Those of us working in the area thank you in advance for your help.

Reference:

Smith TCVaccine Rejection and Hesitancy: a Review and Call to Action. Open Forum Infectious Diseases, 2017, in press.

 

*AKA, how to get your kids’ pictures into a scientific paper.

Is there such a thing as an “evolution-proof” drug? (part the third)

A claim that scientists need to quit making:

I’ve written about these types of claims before. The first one–a claim that antimicrobial peptides were essentially “resistance proof,” was proven to be embarrassingly wrong in a laboratory test. Resistance not only evolved, but it evolved independently in almost every instance they tested (using E. coli and Pseudomonas species), taking only 600-700 generations–a relative blip in microbial time. Oops.

A very similar claim made the rounds in 2014, and the newest one is out today–a report of a “super vancomycin” that, as noted above, could be used “without fear of resistance emerging.” (The title of the article literally claims “‘Magical’ antibiotic brings fresh hope to battle against drug resistance”, another claim made in addition to the “no resistance” one in the Scripps press release by senior author Dale Boger). This one claims that, because the modified vancomycin uses 3 different ways to kill the bacteria, “Organisms just can’t simultaneously work to find a way around three independent mechanisms of action. Even if they found a solution to one of those, the organisms would still be killed by the other two.”

A grand claim, but history suggests otherwise. It was argued that bacteria could not evolve resistance to bacteriophage, as the ancient interaction between viruses and their bacterial hosts certainly must have already exploited and overcome any available defense. Now a plethora of resistance mechanisms are known.

Within the paper itself, the limitations are much more clearly laid out. Discussing usage of the antibiotic, the authors note of these conventional semisynthetic vancomycin analogs:

“However, their use against vancomycin-resistant bacteria (e.g., VRE and VRSA), where they are less potent and where only a single and less durable mechanism of action remains operative, likely would more rapidly raise resistance, not only compromising its future use but also, potentially transferring that resistance to other organisms (e.g., MRSA).”

So as they acknowledge, not really so resistance-proof at all–only if they’re used under perfect conditions and without any vancomycin resistance genes already present. What are the odds of that once this drug is released? (Spoiler alert: very low).

Alexander Fleming, who won the 1945 Nobel Prize in Physiology or Medicine, tried to sound the warning that the usefulness of antibiotics would be short-lived as bacteria adapted, but his warnings were (and still are?) largely ignored. There is no “magic bullet;” there are only temporary solutions, and we should have learned by now not to underestimate our bacterial companions.

Part of this post previously published here and here.

HIV’s “Patient Zero” was exonerated long ago

The news over the past 24 hours has exclaimed over and over:

HIV’s Patient Zero Exonerated

How scientists proved the wrong man was blamed for bringing HIV to the U.S.

Researchers Clear “Patient Zero” from AIDS Origin Story

H.I.V. Arrived in the U.S. Long Before ‘Patient Zero’

Gaetan Dugas: “patient zero” not source of HIV/AIDS outbreak, study confirms

HIV’s supposed “Patient Zero” in the U.S., Gaetan Dugas, is off the hook! He wasn’t responsible for our outbreak!

This is presented as new information.

gaetan_dugas
Gaetan Dugas, from Wikipedia.

It is not, and I think by focusing on the “exoneration” of Dugas, a young flight attendant and one of the earliest diagnosed cases of AIDS in the U.S., these articles (referencing a new Nature paper) are missing the true story in this publication–that Dugas was really a victim of Shilts and the media, and remains so, no matter how many times the science evidence has cleared his name.

First, the idea that Dugas served to 1) bring HIV to the U.S. and 2) spark the epidemic and infect enough people early on that most of the initial cases could be traced back to him is simply false. Yes, this was the hypothesis based on some of the very early cases of AIDS, and the narrative promoted in Randy Shilts’s best-selling 1987 book, “And the Band Played On.” But based on the epidemiology of first symptomatic AIDS cases, and later our understanding of the virus behind the syndrome, HIV, we quickly understood that one single person in the late 1970s could not have introduced the virus and spread it rapidly enough to lead to the level of infections we were seeing by the early 1980s. Later understanding of the virus’s African origin and its global spread made the idea of Dugas as the epidemic’s originator in America even more impossible.

When we think of Dugas’s role in the epidemiology of HIV, we could possibly classify him as, at worst, a “super-spreader“–and individual who is responsible for a disproportionate amount of disease transmission. Dugas acknowledged sexual contact with hundreds of individuals between 1979 and 1981–but his numbers were similar to other gay men interviewed, averaging 227 per year (range 10-1560). And while Shilts portrayed Dugas as a purposeful villain, actively and knowingly spreading HIV to his sexual partners, that does not jibe with both our scientific knowledge of HIV/AIDS or with the assistance Dugas provided to scientists studying the epidemic. Dugas worked with researchers to identify as many of his partners as he could (~10% of his estimated 750), as the scientific and medical community struggled to figure out whether AIDS stemmed from a sexually-transmitted infection, as several lines of evidence suggested. There’s no evidence Dugas was maliciously infecting others, though that was the reputation he received. Dugas passed away from complications of AIDS in March of 1984–weeks before the discovery of HIV was announced to the general public.

Furthermore, the information in the new publication is not entirely novel. Molecular analyses carried out in part by Michael Worobey, also an author on the new paper, showed almost a decade ago that Dugas could not have been the true “Patient Zero.” The 2007 paper, “The emergence of HIV/AIDS in the Americas and beyond,” had the same conclusions as the new paper: HIV entered the U.S. from the Caribbean, probably Haiti, and was circulating in the U.S. by the late 1960s–when Dugas was only about 16 years old, and long before his career as a flight attendant traveling internationally. So this 2007 molecular analysis should have been the nail in the coffin of the Dugas-as-Patient-Zero ideas.

But apparently we’ve forgotten that paper, or other work that has followed the evolution of HIV over the 20th century.

What is unique about the new publication is that it included a sample from Dugas himself, via a plasma contribution Dugas donated in 1983, and other samples banked since the late 1970s. The new paper demonstrated that Dugas’s sample is not in any way unique, nor is it a “basal” virus–one of the earliest in the country, from which others would diverge. Instead, it was representative of what was already circulating among others infected with HIV at that time. In supplemental information, the authors also demonstrated how notation for Dugas in scientific notes changed from Patient 057, then to Patient O (for “Outside California”) to Patient 0/”Zero” in the published manuscript–which Shilts then named as Dugas and ran with in his narrative.

patient-zero-graphic
Graphic of sexual network of early AIDS cases, from Auerbach et al., Am J Med 1984.

 

The media then extended Shilts’s ideas, further solidifying the assertion that Dugas was the origin of the U.S. epidemic, and in fact that he was outright evil. The supplemental material notes that Shilts didn’t want the focus of the media campaign initially to be about Dugas, but was convinced by his editor, who suggested the Dugas/Patient Zero narrative would result in more attention than the drier critiques of policy and inaction in response to the AIDS epidemic by the Reagan administration.

And the media certainly talked about it. A 1987 edition of U.S. News and World Report included a dubious quote attributed to Dugas: “‘I’ve got gay cancer,’ the man allegedly told bathhouse patrons after having sex with them. ‘I’m going to die, and so are you.’” NPR’s story adds “The New York Post ran a huge headline declaring “The Man Who Gave Us AIDS. Time magazine jumped in with a story called ‘The Appalling Saga Of Patient Zero.’ And 60 Minutes aired a feature on him. ‘Patient Zero. One of the first cases of AIDS. The first person identified as the major transmitter of the disease,’ host Harry Reasoner said.”

This is the real scandal and lingering tragedy of Dugas. His story was used to stoke fear of HIV-infected individuals, and especially gay men, as predators seeking to take others down with them. His story was used in part to justify criminalization of HIV transmission. So while science has exonerated him again and again, will the public–and the media–finally follow?

 

 

 

 

Interview with HIV denier-turned-science-advocate John Strangis

Long-term readers of the blog know of my interest in HIV denialism, especially as it is maintained and spread via the Internet. In my online travels, I recently met John Strangis via this blog post. John has an interesting story to tell regarding his experiences with HIV denialism and subsequently, his turn to patient and science activism. Many thanks to John for sharing it here.

John and family
John with his wife and son.
TS: Can you tell the readers a bit about yourself?
JS: My name is John Strangis. I was born in the United States from Italian parents but lived for fifteen years in Italy when I was brought there at 10 years old after my dad retired; I lived there for 15 years before moving back to the States. I have a technical degree in network engineering and computer tech support and have worked in this field until I was laid off in 2010. After my layoff I developed a love for cooking, self taught myself in culinary arts and discovered I was quite talented so I decided to start my own cooking show on youtube. Along with my youtube channel I run a blog where I post HIV/AIDS information, recipes or anything else I may feel like writing about. I also have a passion for science and medicine, which are topics I love to study on my own as a hobby and also because as an HIV/AIDS activist, I find it important to be knowledgeable about certain issues so I can do a better job informing people about HIV through my activism work which I do through my blog and social media. I am a Social Ambassador for Get Tested Coachella Valley; a region wide public health campaign dedicated to dramatically reducing HIV by making voluntary HIV testing standard and routine medical practice and ensuring linkage to care. I believe it is important for people to see that the H in HIV stands for human and being a heterosexual man living with HIV and a public figure, my work can show others that HIV is a condition that affects us all, can help reduce the stigma and discrimination against people living with HIV and encourage others to get tested and treated.
TS: When were you diagnosed as HIV positive? What was your initial reaction?JS: I was diagnosed with HIV in 2011 after learning that my partner, Jessica was living with HIV. I met her in 2007 and she didn’t disclose her status to me out of stigma and fear of being rejected and although I already knew she was living with HIV because I found her prescriptions for HIV medicines, I decided not to hold it against her because I cared for her deeply. When we started seeing each other she made the mistake of throwing her antiretrovirals away and when I discovered she did so, I strongly urged her to tell me the truth because if she was living with HIV as I believed, the last thing I wanted was for her to fall ill because she was not on treatment. Well, my concern became a reality when after four years, she ended up in the hospital with pneumocystis pneumonia. Fortunately she got better and returned on treatment and I reassured her that if after testing, I was also found to be positive, we would deal with it together and I would never leave her side because of it. It did happen that I tested positive for HIV but my initial reaction wasn’t one of fear; I was aware that HIV today is a manageable chronic condition and just viewed my new status as another bump in the road of life and started researching HIV/AIDS to learn as much as possible for us to be able to live a long and healthy life regardless of living with HIV.

TS: How did you become introduced to HIV denialism? Can you describe your involvement with this movement?

JS: It was during my research on HIV/AIDS that I stumbled upon the denialist information; information which is quite easy to find when doing a search for HIV on google. I was into conspiracy theories at the time and the thought of HIV being a conspiracy was something I found pretty interesting to say the least. I asked questions about the denialist information on official HIV/AIDS websites and was banned for doing so by moderators who told me that I was parroting denialst propaganda. This censorship reinforced my belief that perhaps the denialist information had some truth behind it, without knowing that the reason I was banned was because this information can be and is a danger to public health. I searched for denialst groups to attempt to make contact with these people in order to learn more and this led me to joining the Facebook group “Rethinking AIDS”. Eventually, I decided to become a vocal speaker for the denialists because I believed at the time that their information was genuine and I wanted to do the best I could to spread this information in the hopes of helping other people.

During my time with them I was advised not to speak to certain people from the “orthodox side” because they’re all lying shills and sociopaths or not take seriously scientific information on HIV because according to the denialists it’s all propaganda from the “AIDS establishment”. Once I lifted my confirmation bias and decided to disassociate myself from Rethinking AIDS and denialism in general, it caused a wave of attacks, anger, disbelief and insults with some members even alluding to the fact that I was the leader of Rethinking AIDS at the time. Of course I wasn’t and I always reminded them that I was and independent even if I was supporting their point of view regarding HIV/AIDS. You can say I was very involved with the movement; I spoke on radio shows about denialism, filmed my own youtube videos, wrote my own articles about denialism and attempted to inform every person I could about the denialist information.

TS: You mentioned the notorious HIV denialism documentary “House of Numbers” in your blog post. What did you find so compelling about that movie?

JS: The most famous denialist documentary happens to be “House of Numbers” and denialists recommend the viewing of this film to everyone they speak to because according to them, this documentary and others like it prove their allegations that HIV is a scientific fraud. It does so by attempting to show people how HIV tests are unreliable, HIV has never been isolated, HIV drugs are the cause of peoples’ illness and death, etc. I can honestly say I believed the same until I viewed the youtube series “Debunking the AIDS Denialist Movie House of Numbers” by Myles Power. His series deconstructs “House of Numbers” to show you that the film is nothing more than a biased piece of denialist propaganda. I was aware of Myles’ series when I was still a denialist and never took it seriously because for me and others, his series was nothing other than propaganda from the “AIDS establishment”. Once I disassociated from denialism and lifted my confirmation bias, I decided to give Myles’ videos another watch and this time I could see clearly how deceptive the movie “House of Numbers” is. The film contains interviews with scientists that have been edited in such a way to make people believe these scientists support the idea that HIV is a fraud, when in reality many of their statements were taken out of context and some have even released statements to clarify their real position on HIV/AIDS. People to this day are being misled into believing “House of Numbers” is proof that HIV is a fraud, when in reality it’s a cleverly designed tool of denialist propaganda.

TS: What caused you to modify your stance?

JS: During the last year with the denialists, Jessica and I had a son who was born negative for HIV because my she and my child received the appropriate treatment to avoid vertical transmission. I was still entrenched in denialism during the birth of my son and was not too happy about the doctors wanting to give AZT to my wife and newborn child but decided to do so for two reasons. The main reason was the worry that the authorities would force treatment on my son but the second reason was a thought that crossed my mind: What if I was wrong? We opted for the treatment and hoped for the best and although everything worked out fine for us; the denialists chastised us for our decision. The final blow which led to my disassociation from denialism was when months after our son’s birth, my wife Jessica fell ill with pneumocystis pneumonia again; this time so severe she almost died. Jessica restarted treatment after falling ill the first time in 2011 but only stayed on treatment until we joined the denialists; we both stopped treatment during our time with them because as they preach, we believed the medications were toxic poisons and the real cause of AIDS. Something was definitely not right here and I decided to end my time as and HIV/AIDS denialist. Fortunately Jessica recovered and we are back on treatment but this choice and our disassociation from denialism caused us to be attacked, insulted, unfriended on Facebook by many people I was associated with; something akin to being thrown out of a cult, actually.

TS: What has been the response you’ve gotten from the denialist community? How have you and your wife handled it?

JS: As I previously mentioned, we were attacked, insulted and even my son was brought into the filth they spewed against us. The president of the group “Rethinking AIDS”, David Crowe, accused me of selling my soul to the devil, many others continued to harass me and even told me that our decision to get back on treatment will result in the death of my whole family. My wife and I have pretty thick skins and while she ignores them and is happy she is doing better now, I use my knowledge to help other people avoid the same trap we fell into in the hopes that perhaps I can do some real good this time and avoid people’s suffering because they were fed and believed incorrect medical information. The best example I can make of how we were treated by the denialist community after our disassociation would be how a member of Scientology is treated once he or she decides to abandon the church. To the denialists we are nothing more than human garbage. I was called a shill and a sellout, and they accuse me of leading people to the death camps because today I promote HIV/AIDS awareness instead of pseudoscientific nonsense. The denialists in my eyes are a cult; too bad I did not see this before becoming entrenched into their dogma and becoming a voice for their agenda.

TS: How do you feel others can avoid being miseld (potentially dangerously so) by the denial movement?

JS: In the past, censorship of denialist information was the norm; pretend it doesn’t exist and hope nobody will notice. I believe that people should be informed about the dangers of eschewing necessary treatment for HIV and what can possibly happen to them if they do. I have people writing to me daily asking for help or wanting to hear my story because they got involved in denialism and are falling ill but don’t know what to do. Although I cannot and do not offer medical advice, I share my story in the hopes that they make the best choice for themselves. It’s great to also hear one of these same people write to me again down the road to thank me because their health has improved after returning on or starting treatment. Articles such as this one and many others exposing the denialist agenda are a great help and I will continue to do my part to make sure people understand the risks they are taking when getting involved with HIV/AIDS denialism. Giving people the correct information regarding HIV/AIDS, how today it is no longer a death sentence and that on treatment they should expect to live a long and healthy life comparable to a person not living with HIV is also very helpful. For now me and a few others are the only voices speaking against denialism but there should be more. In some countries it’s illegal to disseminate incorrect medical information and I believe such a law could prove to be of some benefit in this country as well. The article entitled “Can You Inoculate Against Science Denial?” is a great read and explains very well what we are facing today and how to approach this issue.

TS: What message would you pass on to others who are newly diagnosed?

JS: If you’re newly diagnosed, the treatments today can keep you healthy and living a long life comparable to a person not living with HIV and there are many people and organizations that can offer you support; you are not alone. Remember, HIV doesn’t define you, you define HIV. Being newly diagnosed is a life changing experience, but it doesn’t have to be a bad experience. By getting tested and getting into treatment, you are taking control of your health. Become informed as much as you can about HIV. Ask your doctor questions, research, reach out to support groups and if you happen to stumble upon the denialist information, make sure you know what you’re possibly getting yourself into before jumping on the bandwagon. If anyone newly diagnosed is reading this and would like to contact me for information or support, feel free to reach out.

“The Hot Zone” and the mythos of Ebola

The Hot Zone was first released in 1994, the year I graduated high school. Like many readers, that book and Laurie Garrett’s The Coming Plague* really sparked my interest in infectious diseases. In some sense, I have those books to thank (or blame?) for my career.

But I’m still going to criticize The Hot Zone, because as a mature infectious disease epidemiologist and a science communicator in the midst of the biggest Ebola outbreak in history, The Hot Zone is now one of the banes of my existence. A recent article noted that the book is back on the bestseller list, going as high as #7 on the New York Times list recently, and #23 on Amazon. It’s sold over 3.5 million copies, and it’s reported as “a terrifying true story.” Many people have gotten almost all of their Ebola education from just The Hot Zone (as they’ve told me over, and over, and over in the comments to this blog and other sites).

Here’s why The Hot Zone is infuriating to so many of us in epidemiology and  infectious diseases.

First–the description of symptoms.Preston himself admits that these were exaggerated. Over and over, he uses words like “dissolving,” “liquefy,” “bleeding out” to describe patient pathology. (If I had been playing a drinking game while reading and did a shot every time Preston uses “liquefy” in the book, I’d be dead right now).

Of a Marburg patient, pseudonymously named Charles Monet, he describes him as

“…holding an airsickness bag over his mouth. He coughs a deep cough and regurgitates something into the bag. The bag swells up….you see that his lips are smeared with something slippery and red, mixed with black specks, as if he has been chewing coffee grounds. His eyes are the color of rubies, and his face is an expressionless mask of bruises. The red spots…have expanded and merged into huge, spontaneous purple shadows; his whole head is turning black-and-blue…The connective tissue of his face is dissolving, and his face appears to hang from the underlying bone, as if the face is detaching itself from the skull…The airsickness bag fills up to the brim with a substance known as the vomito negro, or black vomit. The black vomit is not really black; it is a speckled liquid of two colors, black and red, a stew of tarry granules mixed with fresh red arterial blood. It is hemorrhage, and smells like a slaughterhouse….It is highly infective, lethally hot, a liquid that would scare the daylights out of a military biohazard specialist…The airsickness bag is brimming with black vomit, so Monet closes the bag and rolls up the top. The bag is bulging and softening, threatening to leak, and he hands it to a flight attendant.

“…the body is partly transformed into virus particles…The transformation is not entirely successful, however, and the end result is a great deal of liquefying flesh mixed with virus…The intestinal muscles are beginning to die, and the intestines are starting to go slack…His personality is being wiped away by brain damage…He is becoming an automaton. Tiny spots in his brain are liquefying…Monet has been transformed into a human virus bomb.

“…The human virus bomb explodes…The victim has “crashed and bled out.”…He becomes dizzy and utterly weak, and his spine goes limp and nerveless and he loses all sense of balance….He leans over, head on his knees, and brings up an incredible quantity of blood from his stomach and spills it onto the floor with a gasping groan. He loses consciousness and pitches forward onto the floor. The only sound is a choking in his throat as he continues to vomit while unconscious. Then comes a sound like a bedsheet being torn in half, which is the sound of his bowels opening and venting blood from the anus. The blood is mixed with intestinal lining. He has sloughed his gut. The linings of his intestines have come off and are being expelled along with huge amounts of blood. Monet has crashed and is bleeding out.”

And later, at autopsy:

“His liver…was yellow, and parts of it had liquefied–it looked like the liver of a three-day-old cadaver. It was as if Monet had become a corpse before his death…Everything had gone wrong inside this man, absolutely everything, any one of which could have been fatal: the clotting, the massive hemorrhages, the liver turned into pudding, the intestines full of blood.”

And I didn’t even get to what Preston says about Ebola and testicles. Or pregnant women. Seriously, there’s pages upon pages upon pages of this stuff.

Throughout the book, Preston presents these types of symptoms as typical of Ebola. Not “in worst case, this is what Ebola could do,” but simply, “here’s what happens to you when you get Ebola.” It’s even beyond a worst case scenario, as he notes in part: “In the original ‘Hot Zone,’ I have a description of a nurse weeping tears of blood. That almost certainly didn’t happen.”

Compare that to just about any blog post by actual workers with Médecins Sans Frontières, healthcare workers on the front lines of this and many previous Ebola outbreaks. Stories are scary enough when the reality of the virus is exposed, and with it the dual affliction of poverty and the terrible health system conditions of affected countries. I interviewed MSF’s Armand Sprecher a few years back during a different Ebola outbreak, and he noted this about symptoms–quite different from the picture Preston paints:

The patients mostly look sick and weak. If there is blood, it is not a lot, usually in the vomit or diarrhea, occasionally from the gums or nose.

The clinical picture of Ebola that people take away from The Hot Zone just isn’t accurate, and with 3.5 million copies sold, is certainly driving some (much? most?) of the fear about this virus.

Second, airborne Ebola. Though this trope is often traced back to “Outbreak,” Preston clearly suggests that both Zaire Ebolavirus and Reston Ebolavirus can be airborne. What he never discusses nor clarifies is that the “evidence” for this potential airborne spread is really thin, and not even indicative of animal-to-animal or animal-to-person transmission.

Rather, it’s much more likely that if airborne spread was involved, it was aerosols generated by husbandry (such as spraying while cleaning cages), rather than ones which would have been generated by infected primate lungs (a necessary step for primate-to-primate transmission via a respiratory route). Indeed, this is the paper that Nancy Jaax et al. published on the findings Preston talks to Jaax about, 13 years after the fact (the experiment is marked as 1986 in The Hot Zone), and noting that transmission due to husbandry practices could not be completely ruled out. It’s unclear also that the Reston strain moved through the primate facility via air, rather than via spread due to caretakers, equipment, or husbandry. Nevertheless,  it’s frequently cited as fact and without any qualification that Reston is an airborne type of Ebola.

Instead, here is what Preston says about it:

“If a healthy person were placed on the other side of a room from a person who was sick with AIDS, the AIDS virus would not be able to drift across the room through the air and infect the healthy person. But Ebola had drifted across a room. It had moved quickly, decisively, and by an unknown route. Most likely the control monkeys inhaled it into their lungs. ‘It got there somehow,’ Nancy Jaax would say to me as she told me the story some years later. ‘Monkeys spit and throw stuff. An when the caretakers wash the cages down with water hoses, that can create an aerosol of droplets. It probably traveled through the air in aerosolized secretions. That was when I knew that Ebola can travel through the air.'”

He then comes back to “airborne Ebola” several times, based in part on this idea.

But here’s the thing. Just about any virus or bacterium could be aerosolized this way–via high pressure washing of cages, for example. If it can bind to lung cells and replicate there, as we already know Ebola can, it can cause an active infection.

But that’s not the same as saying “Ebola can drift across the room” from one sick person to a healthy person and cause an active infection, as Preston tries to parallel with HIV in the above paragraph. Even in Jaax’s experiment and others like it, there’s zero evidence that primates are expelling Ebola from their lungs in a high enough concentration to actively infect someone else. And that is the key to effective airborne transmission. Think of anthrax–if it’s released into the air, we can inhale it into our lungs. It can replicate and cause a deadly pneumonia. But anthrax isn’t spread person-to-person because we don’t exhale the bacteria–we’re dead ends when we breathe it in. This is what happens with primates as well who are experimentally infected with Ebola in a respiratory route, but Preston implies the opposite.

Third, if it wasn’t for points one and two, The Hot Zone really could be read as a “damn, Ebola really isn’t that dangerous or contagious so I have little to worry about” narrative. Preston describes many “near misses”–people who were exposed to huge amounts of “lethally hot” Ebola-laden body fluids, but never get sick–but doesn’t really bother to expose them as such. All 35 or so people on the little commuter plane Monet flies on between his plantation in western Kenya and Nairobi, deathly ill, vomiting his coffee grounds and dripping nasal blood into the airsickness bag he handed to a flight attendant–none of them come down with the disease.

The single secondary infection Monet causes is in a physician at the hospital where he’s treated, after his bowels “ripped open” like a bedsheet. That physician, Shem Musoke, not only swept out Monet’s mouth until “his hands became greasy with black curd” but also was “showered” with black vomit, striking him in the eyes and mouth. Monet’s blood covered Musoke’s “hands, wrists, and forearms,” because “he was not wearing rubber gloves.” Musoke developed Marburg virus disease, but survived–one of the few secondary cases of infection described in the book.

Another “close call” was that of Nurse Mayinga N. She had been caring for one of the Ebola-infected nuns at Ngaliema Hospital in Kinshasa during the 1976 outbreak in Zaire, the first detected entry of Zaire Ebolavirus into the human population. Beginning to feel ill herself, she ditched her job and disappeared into the city for two days. She took a taxi to a different, larger, hospital in the city, but was sent away with a malaria shot. She’s examined at a third hospital and sent away. Finally she returns to Ngaliema hospital and is admitted, but by that time, had caused a panic. Preston says:

“When the story reached the offices of the World Health Organization in Geneva, the place went into full-scale alert…Nurse Mayinga seemed to be a vector for an explosive chain of lethal transmission in a crowded third-world city with a population of two million people. Officials at WHO began to fear that Nurse Mayinga would become the vector for a world-wide plague. European governments contemplated blocking flights from Kinshasa. The fact that one infected person had wandered around the city for two days when she should have been isolated in a hospital room began to look like a species-threatening event.”

How many secondary cases were the result of Mayinga N’s wanderings? That possibly “species-threatening” event? Preston again devotes several paragraphs to Mayinga’s gruesome illness and death, and notes that 37 people were identified as contacts of hers during her time wandering Kinshasa. He tells us they were quarantined “for a couple of weeks.”

The fact that exactly zero people were infected because of Mayinga’s time in Kinshasa merits half a paragraph, and not dramatic or memorable. “She had shared a bottle of soda pop with someone, and not even that person became ill. The crisis passed.” <–Yes, that is a direct quote and the end of the chapter on Mayinga. Contrast that to Preston’s language above.

Finally, beyond the science and the fear-mongering about Ebola, beyond everything and everyone in the story “liquefying” and “dissolving” and “bleeding out,” reading this book again as an adult, as a woman in a science career with a partner and kids, I was also left annoyed at the portrayal of the scientists. All of the major characters except one, Nancy Jaax, are men of course, ranging in age from late 20s to 50s-60sish. Understandable since this is in a mostly-male military institution and in a BLS4 setting to boot, but the one Preston focuses on for much of the narrative is Jaax.

While Preston may have been trying to portray Jaax as the having-it-all, tough-as-nails woman scientist, the fact that she’s the only one with any kind of home life is telling–mostly because he devotes more paragraphs to how she neglects both her children and her dying father than any success she has in her life outside of work. She is told early on by one of her colonels that “This work is not for a married female. You are either going to neglect your work or neglect your family.” This thought comes up repeatedly for Jaax, and in the end, while she was accepted and even honored by her colleagues and bosses, we hear over and over again how her children are left on their own to microwave meals and tend to their homework. How they desperately wait up for her to get home after work, often eventually falling asleep in her bed before she arrives. How she tells her father, dying of cancer back in Kansas and both knowing he only has a few hours to days to live, good-bye and “I’ll see you at Christmas” over the phone. How she barely arrives on time for his funeral after he passes.

We hear one paragraph about how another colleague, Thomas Geisbert, had a crumbling marriage with two small children, and how he left the children at his parents’ house for a weekend. Other than that, the personal lives of any other characters are practically absent, save for Jerry Jaax, Nancy’s husband. Even with him, much of the character development revolves around his fears of his wife working in a BSL4 lab.

The Hot Zone, for me, is unfortunately one of those books that you read as a young person and think is amazing, only to revisit years later and see it as much more shallow and contrived, the characters one-dimensional and the plot predictable. The problem is that The Hot Zone is not just a young adult novel–it’s still presented and defended as an absolutely true story, especially by huge Preston fans who seem to populate comment threads everywhere. And now it looks like there will be a sequel. At least it should be good for a drinking game.

 

*I’ll note that The Coming Plague is much more measured when it comes to Ebola–the two were grouped together because temporally, they were released close together, not because they display the same type of hype regarding the virus.

Plague in Victorian San Francisco–lessons for public health communication

I have a post up today at the Scientific American Guest blog, discussing how an earthquake and denial led to prairie dog plague. It details an outbreak of plague in Victorian San Francisco–the first time plague hit the United States–and the many downstream consequences of that outbreak (which began in 1900 and wasn’t really contained until 1908). While the story is over at SciAm, here I wanted to talk more about why the outbreak became such a public health disaster.

The outbreak was first recognized by Dr. Joseph Kinyoun, a bacteriologist who had been, until his transfer to San Francisco, heading up the United States Hygienic Lab, the precursor to the National Institutes of Health. Charged with inspecting incoming ships, Kinyoun had the power to quarantine ships and their crew in harbor, in an effort to keep plague out (which was already circulating in port cities of Honolulu, Sydney, and Tokyo, amongst others). When Kinyoun first suspected a case of plague, San Francisco merchants quickly banded together to deny any such pestilence in their city. What followed was a mess of ineffective quarantines, fights over scientific data, accusations of “spiking” corpses with plague samples Kinyoun had brought with him from Washington, D.C., and an eventual call for Kinyoun’s execution.

History shows that Kinyoun was right–San Francisco had plague cases, and the plague would continue to smolder for almost a decade. As I note in the post, it still lingers today in squirrels and rodents from the Pacific Ocean inland to the Great Plains. So what went wrong, if Kinyoun clearly had the facts on his side?

Like many scientific issues today, it wasn’t the facts that ended Kinyoun’s career in San Francisco, but his messaging. Admittedly, he was acting without all the knowledge of plague transmission that we have today–it wasn’t confirmed in 1900 that rat fleas were the main vector of the disease from rodents to person, and so Kinyoun couldn’t have been sure his attempts to quarantine Chinatown would be ineffective. Furthermore, in some cases, he was merely obeying orders from his superiors. His boss, Surgeon General Walter Wyman, had recently published a monograph on plague, endorsing the idea that plague selectively targeted Asians due to their particular diets and their poverty.

Still, the way Kinyoun went about attacking those most affected in the initial outbreak–the Chinese immigrants–only served to terrify them and drive plague cases underground. Indeed, when public health officers went door-to-door searching for plague cases, one anecdote notes that a game of dominoes was set up in a home, and all the men stayed perfectly still with dominoes in their hands while officers searched the home for anyone with plague symptoms. Little did they know that a plague corpse was sitting at the card table, “Weekend at Bernie’s” style (1). Other Chinese fled Chinatown, bunking with friends and relatives elsewhere when possible. Threats were made to burn Chinatown (as had recently happened in Honolulu); Kinyoun tried to bar travel by any “Asiatics” on trains or boats leaving the city, clearly a race-based order. Furthermore, even when cases of plague were identified in Chinatown, the very practice of carrying out autopsies was offensive to the Chinese, giving them even more reason to hide their sick and dead rather than cooperate with Kinyoun and other public health authorities.

Kinyoun left the city in 1901, and eventually Rupert Blue was brought in to control the outbreak. Taking lessons from those who’d been there prior (and were unsuccessful), Blue took a much more diplomatic tack. He secured the assistance of a Chinese translator, Wong Chung, and worked within the Chinese community to gain their support. He often downplayed the outbreak–never suggesting it wasn’t happening or wasn’t important, but trying to differentiate hype from supported fact. He worked to clean up Chinatown, both in its housing and in rat infestations, rather than to quarantine infected areas. He noted that plague could occur in many different races, and avoided scapegoating one particular ethnic class. He also reached out to businessmen to educate them, and show how important cleaning up the city was for their bottom lines. He worked with the facts as Kinyoun did, but he recognized the importance of grassroots support in his campaign, and targeted reasons why various factions should support his various anti-plague measures.

In the end, while Kinyoun was practically run out of town on a rail, Blue was given banquets and numerous accolades. He served as the Surgeon General from 1912-1920, and his methods for cleaning up the city led to a decrease not only in plague, but in many infectious diseases. While Kinyoun’s science was sound, Blue managed to break down barriers and work with those who could help him spread his message, and take ownership of the work that needed to be done. He framed* the threat in terms that meant something to the populations he was working with: businessmen and threat to their incomes; immigrants’ threat to health, with promises to respect their culture and help them make their homes cleaner places to live; city and state government, noting the threat to the very reputation of California and San Francisco in the US and around the world. His tactics served him well in 1902-08, and should serve as a reminder to science communicators today as well.

(*I know that term is somewhat tainted in some circles, but bear with me…)

Further reading and references

Chase, “The Barbary Plague”.

Echenberg, “Plague Ports: The Global Urban Impact of Bubonic Plague, 1894-1901.”

Matt Damon: no poo for you

Readers may be familiar with Matt Damon’s charity work with water.org, an organization he co-founded. Water.org seeks to raise awareness of the lack of clean water by almost a billion people on earth, and lack of toilets by almost 2.5 billion–and more importantly, they work to remedy that situation by providing sustainable, local solutions. His new video brings awareness in a rather unorthodox manner: he’s refusing to go to the bathroom until everyone on earth has access to clean water and toilets.

Skeptical science and medical reporting (#Scio13 wrap-up)

Ivan Oransky and I moderated a session last week at ScienceOnline, the yearly conference covering all things at the intersection of science and the internets. We discussed the topic ““How to make sure you’re being appropriately skeptical when covering scientific and medical studies.”

We started out discussing some of the resources we’d put up at the Wiki link. Ivan teaches medical journalism at NYU, and noted that he recommends these criteria when evaluating medical studies. I noted I use similar guidelines, and as a scientist, think about papers in a journal club format before I cover them on the blog, considering their strengths and weaknesses (especially in study design and analysis). Ivan also mentioned the need sometimes to consult a real statistician if you don’t understand some of the analyses–suggesting to “keep a biostatistician in your backpocket” or, failing that, to reach out to those at you local university, as “they tend to be lonely people anyway.” (Just kidding, biostats friends and colleagues!) A number of stats references for journalists were also mentioned (see the Storify for specific links). From here, we handed the discussion over to the audience.

One of the first topics we reviewed was just what is meant by being “appropriately skeptical,” which was a theme of the session that we kept coming back to. How does one do that without being an asshole? The importance of criticizing the study’s limitations and weaknesses–and not necessarily being a jerk to the authors–was noted. No study is going to be perfect, after all. It was also pointed out that anyone reporting on the study should go beyond the press release, and not to do so is in fact “journalistic malpractice.” Bora also started an interesting tangent–are medical studies more likely to be fake (or more deserving of skepticism about results) than more basic science reports? Also, is it worth reporting on bad studies? Sometimes this can help to point out the bad science (like that recent mouse-GMO study, which was reported on–negatively–in many venues). This recent study on “out” versus “closeted” homosexuals in Montreal was also brought up by Annalee Newitz–a small study that was widely reported, but was it designed and powered correctly to examine the questions it supposedly answered? (I haven’t read it, but just looking over the article, looks like “no”.)

Audience members also asked how to find sources to comment on studies. Ivan has previously written a post on this, and others in the audience recommended looking at other references in the story itself, or looking at reviews or meta-analyses on the topic to see who else may have expertise in these particular areas. However, SciCurious also noted that you need to be somewhat skeptical of those as well, and examine if the authors of these reviews or analyses have their own biases that may skew the information being presented.

The idea of “Glamour Mags” was also introduced. How should those reporting on a story know whether the results were published in a “good” journal or not? Several pointed out that just because a study is in a lower impact-factor journal doesn’t necessarily mean it’s not to be trusted. Eli elaborated, noting that fraud is actually higher in the big, fancy journals, and that many studies that end up in lower-tier journals actually go through *more* peer review in some cases, as they have been rejected from higher impact publications.

Unfortunately as I was moderating, I wasn’t taking notes, and I can’t recall what we ended the session on (but it was a great comment and general agreement that it nicely tied things up). I’ve also tried to Storify the session based on the #medskep hashtag, but I’m new to Storify and it doesn’t want to embed for me. If you were there, please feel free to add to the discussion in the comments below.

Social media evangelism

It’s that time of the year. Spots for ScienceOnline are a hotter commodity than Justin Bieber concert tickets amongst the pre-teen crowd; The Open Laboratory 2011 has just come out in print; and academics are discussing the utility of social media in full force. This topic has long been an interest of mine; with Shelley Batts and Nick Anthis, I even wrote a peer-reviewed paper on the topic way back in 2008. And it’s fresh on my mind, as last week I braved the world of the University of Iowa’s Internal Medicine Grand Rounds to discuss “Social Media and Medicine,” evangelizing for social media in an auditorium full of (mostly skeptical) physicians. When I came back to my computer, I saw this Twitter conversation about the utility of social media in academia (click to embiggen):

I agree with many of the points Patrick makes here. He describes how a student saw him browsing Twitter while proctoring an exam, and rolled her eyes. He notes though:

Certainly, Twitter and various other social media sites have a reputation for inanity…However, social media is a multifunctional tool that can be used in other, more productive, ways.

I’m an academic and an anthropologist, so I’ve tailored my social media use for those fields. Others may have different experiences. Certainly, I may use it for connecting with friends or family, sharing music or humor, or just venting. This isn’t to dismiss the personal – academics are people too! (so I’ve heard) – but there are more substantive benefits I wish I could have discussed with the eye-rolling student. A partial list includes: sharing news on research, professional networking, and engaging with a wider audience through blogging.

I discussed all of these today in my talk, tailoring them to physicians and med students. However, there are other reasons why I think social media is a good idea for today’s academic. Here’s how it’s benefited me:

1) Networking via social media has been huge for my career. A fellow academic who I met through social media–and probably wouldn’t have been in contact with otherwise because his work is on the very edge of intersecting with mine–ended up writing me a letter of recommendation for my K01 award, as I wanted to get more training in a field where he’s already a noted expert. I’ve had colleagues whom I met via social media read grant drafts and provide me feedback, strengthening my writing and presentation. I’ve religiously followed blogs like DrugMonkey for general advice on the grants game. Hell, even back in the stone ages when I was interviewing for my current job, the first place I went for advice once I had an interview was an online forum I was involved in, which was chock-full of academics.

I got the job, and the K award, on my first try. I think a big part of that success was due to assistance I received via social media.

2) Blogging, too, has paid dividends. My work has been well-cited for my field and has received quite a bit of media attention, and I do think that part of that is because I bring attention to what I’m studying via the this blog and my Twitter account. I’ve also had invitations to speak about my work at a number of academic, government, and “regular citizen” venues, which again I feel partially stem from the publicity my research has received. I’ve also given talks on science denial, social media, and zombies–all of which follow directly from my blogging. I noted above my paper on academic blogging; another on HIV denial and the Internet was published in 2007 with fellow blogger Steven Novella. The latter article has been accessed over 50,000 times, part of that due to the attention it received on social media.

3) Networking via social media has been great for my personal life. (It doesn’t have to all be about work, right?) I’ve met people online and in meatspace who are just fucking cool individuals, which is always a bonus. I even met my Significant Other via nerdy science-related social media, where we talked shop for years before ever meeting in person.

What about downsides?

1) Media attention. I mentioned this as a “pro” above, but it also can have its cons. I certainly still fear the Sagan effect. I do a good number of interviews–about one or two a month currently, but that can go up to one or two a day (or more) when there’s a big new paper out from my group or in my general area of expertise. I’ve tried to cultivate good relationships with journalists, both locally and nationally, and try to practice what I preach to colleagues about being available for interviews and not just blowing off the press. So far, I don’t know that it’s caused me harm in any way, but that concern remains.

2) Perception. Certainly many faculty still don’t “get” social media. The perception remains that it’s a time sink and makes one less productive, or that it’s something that “kids these days” do rather than professional adults. While I don’t think my online activities played a role in my tenure evaluation (either positively or negatively), I’ve felt pressure over the years to exceed expectations for publishing leading up to tenure simply so no one could say my case was borderline, and “if only she hadn’t wasted so much time blogging, she could have published more manuscripts and made a stronger case for herself.” I consider my use of social media a hobby and a service activity, but it’s a public hobby that can be easily viewed by colleagues–unlike hours on the golf course or time spent at home scrapbooking.

3) Creeps/trolls. I’ve had many of the same issues as other female bloggers: threatening emails sent personally to myself or to professional colleagues; commenters responding to my appearance rather than the content of my writing. I even had an HIV denialist show up at my office unannounced. Anytime you put yourself out there in an online venue, criticism is to be expected, but it seems to be nastier for women than for men. Blogger beware.

Even though the cons can be nasty, I still think the pros have far outweighed them over the past 10 years that I’ve been involved in science social media. And so, I will continue to evangelize and hope that other scientists and educators dip their toes into the social media waters–or at the very least, support their colleagues who test them out.