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.

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.

HIV denial: alive and well in 2014 [UPDATED]

Everything old is new again. For years on this blog, I wrote about HIV denial and the few fringe scientists and journalists who espoused it. I attracted a host of trolls, some of whom repeatedly attacked my credibility, my appearance, even showed up at my academic office. One of the most prolific of these was Henry Bauer, who posts long-debunked ideas on HIV/AIDS (and the Loch Ness Monster to boot).

That was, oh, 2007-ish and prior. In that same year Steven Novella and I co-authored an article on HIV denial for PLoS Medicine. In 2008, a leader of the denial movement, Christine Maggiore of “Alive and Well AIDS alternatives,” died of AIDS. In 2009, books were released from Seth Kalichman  (Denying AIDS)  and Michael Specter (Denialism), both further outlining the reasons why HIV denial is so, so, so incredibly flawed and dangerous. Seth still runs his blog, and HIV denial hasn’t gone away, but it’s lost some prominence in recent years–at least in the US.

For whatever reason, this week has been a hotbed of it.

First, MD/blogger Kelly Brogan had a post in support of HIV denial , specifically addressing pregnant women (currently taken down but the internet never forgets).

Now even worse, Frontiers in Public Health, an actual, peer-reviewed journal, has published a paper that is straight-out, unvarnished, HIV denial. Full stop. This journal is part of the “Frontiers in” series, that many readers will probably be familiar with. FPH claims that

Each Frontiers article is a landmark of the highest quality, thanks to genuinely collaborative interactions between authors and review editors, who include some of the world’s best academicians. Frontiers is well aware of the potential impact of published research both on future research and on society and, hence, does not support superficial review, light review or no-review publishing models. Research must be certified by peers before entering a stream of knowledge that may eventually reach the public – and shape society. Therefore, Frontiers only applies the most rigorous and unbiased reviews, established in the high standards of the Frontiers Review System. Furthermore, only the top certified research, evaluated through the democratic Frontiers Evaluation System, is disseminated to increasingly wider communities as it gradually climbs the tiers of the Frontiers Tiering System from specialized expert readership towards public understanding.

Except, no way in hell is that accurate after the publication of this manuscript: “Questioning the HIV-AIDS hypothesis: 30 years of dissent,” by a professor at Texas A&M University named Patricia Goodson. Goodson’s qualifications appear to be in health education, including sexual health (and many publications related to abstinence-only education and to abortion), but nowhere do I see any publications or training relevant to epidemiology or virology.

The paper itself consists entirely of the old claims that have been debunked time and time and time and time again, using tactics we defined in our paper: quote-mining, cherry-picking evidence, moving goalposts, citing prominent deniers and denial groups, and more. There is nothing of value here, and the only real nod she gives to orthodox opinions on HIV are to cite Kalichman’s book ever-so-briefly and dismissively (characterizing it as “a harsh critique of unorthodox views and of Duesberg in particular”). 

And who is behind the curtain? Well, for one, Henry Bauer, who appears immediately in the comments of the paper, pimping his list of HIV denial resources. Goodson comments (click to embiggen):

Goodman and Bauer

So how in the world did this paper make it into a peer-reviewed journal with the stamp of approval of the Frontiers line and backing of Nature Publishing Group?  (EDITED via comments: Grace Baynes of NPG notes that Frontiers journals are editorially independent from NPG; see my response below). The two reviewers, Preeti Negandhi and Lalit Raghunath Sankhe are also apparently both members of the FPH editorial board, despite almost no academic record. Neither has experience in HIV/AIDS , but the latter appears to be the editor,  Sanjay P Zodpey‘s go-to reviewer, while the former only has one publication listed on the FPH page, co-authored with Zodpey on public health capacity development in India. No publications are listed on Sankhe’s page, but there was one I could find which may possibly be associated with this name. Other than that, zero record in PubMed.

Why were these people, who clearly have as little background in this area as Goodson does, chosen as reviewers? This is, at the best, a pathetic excuse for peer review and editing, and completely unprofessional and unacceptable. Did Zodpey, who does appear to have some background in HIV, even read the article before passing it along to two unqualified reviewers? This type of review makes a mockery of the entire system and makes us all look bad.

Even worse, papers like this are clearly dangerous. I wrote not even a week ago about the deadly distrust so many have in our medical system, and cited HIV denial as an example. South African policies regarding HIV (and the denial that the virus was behind AIDS) led to an estimated 330,000 premature deaths from AIDS, and 35,000 infants born with HIV infections that could have been prevented in that country alone.  This is what Goodson and Bauer (among others) are supporting. Frontiers and Nature, do you really want to be a part of this as well?

(Tip o’ the hat to Kenneth Witwer and Brian Foley for bringing this to my attention.)

UPDATED 9/26 The Frontiers Editorial Office has posted a Statement of Concern on their site regarding the paper:

Statement of Concern: The article “Questioning the HIV-AIDS hypothesis: 30 years of dissent” (Goodson 2014), was accepted for publication on the 7th September 2014. In its duty to publish responsibly, and in light of numerous complaints received about the paper, Frontiers has launched an investigation, the outcome of which will be made public once all adequate procedures have been completed. September 26, 2016. Frontiers Editorial Office, Lausanne, Switzerland.

 

Deadly distrust

Gregg Mitman’s article in the September 17th New England Journal of Medicine, “Ebola in a Stew of Fear,” is unfortunately all too prescient. Dr. Mitman highlighted “the ecology of fear” in Western Africa. Fear is present on both the part of Westerners (scared of Africa’s yellow fever, malaria, Ebola, its mere “different-ness”), and by native Africans (of whites’ history of colonization and slavery, of medical exploitation dating back well over a century). Fear of each other.

This history of fear, the cultural legacy of decades of mistrust of both Western people and their medical science, played a role in the murders of 8 people working on the Ebola outbreak in Guinea–journalists, medical officers, local administrators, and a preacher who were just trying to educate locals about the virus. The hostile crowd first threw stones at the team, and ended in their brutal deaths. The steps in-between have not been reported.

This is the extreme end of the science and medical denial continuum. We can scoff in America and attribute such horrors to the “brutal, savage Africans,” who cut their daughters and rape virgins to cure AIDS, as I’ve unfortunately already seen in some Twitter comments–some of our notions of “them” not so dissimilar from American colonists of centuries past regarding the slaves they once owned.

We can accept this scape-goating and ignore the West’s own modern-day culpability, with our fake vaccination campaigns that have left others dead in the aftermath; with our movies and popular culture depicting Africans as the West’s guinea pigs, and our shady pharmaceutical dealings that make that characterization all too believable.

No, it isn’t always a battle of Africans against Westerners. In South Africa, former President Thabo Mbeki was deceived by false claims about the relationship between HIV and AIDS that he had read on the internet, suggesting that HIV was not the cause of AIDS, and that  Western science should be distrusted in favor of traditional herbal remedies recommended by his health minister, such as garlic and beetroot. Because of his suspension of Western medical treatments, an estimated 330,000 South Africans died prematurely from HIV/AIDS between 2000 and 2005 , and at least 35,000 babies were born with HIV infections that could have been prevented.

Denialism kills. Distrust kills. Fear kills.

Here in the U.S., Natural News, a site run by the self-dubbed “Health Ranger,” Mike Adams, ran a piece this past summer suggesting that journalists and scientists who defended genetically-modified organisms (GMOs) were similar to Nazis, accelerating “heinous crimes being committed against humanity” and collaborating with an “with an anti-human regime,” and that such individuals should be named as such for future crimes:

“Just as history needed to record the names and deeds of Nazi war criminals, so too must all those collaborators who are promoting the death and destruction caused by GMOs be named for the historical record. The true extent of their collaboration with an anti-human regime will all become readily apparent once the GMO delusion collapses and mass global starvation becomes an inescapable reality.

I’m hoping someone will create a website listing all the publishers, scientists and journalists who are now Monsanto propaganda collaborators. I have no doubt such a website would be wildly popular and receive a huge influx of visitors, and it would help preserve the historical record of exactly which people contributed to the mass starvation and death which will inevitably be unleashed by GMO agriculture (which is already causing mass suicides in India and crop failures worldwide).”

Adams is similarly anti-vaccine, and currently is featuring on his website “11 horrible truths about Ebola the government doesn’t want you to know.” These “truths” include suggesting that infected individuals should avoid hospitals, and that citizens everywhere should prepare for the inevitable quarantine at gunpoint.

The worst part of Adams’ misinformation of this type is that it doesn’t stay within the borders of the U.S.–misinformation on Ebola epidemiology and quack cures like those Adams promotes are also being spread in African nations via Facebook pages and other types of social media

Denialism kills. Distrust kills. Fear kills.

Because of distrust of Western medicine, a recent article noted that parts of Africa have better vaccination rates than many wealthy neighborhoods in Los Angeles–and as a result, 10 babies died in a 2010 outbreak of whooping cough in California.

The deaths of the workers in Guinea show this fear and denial writ large; the purposeful killing of those only wanting to help their local and global neighbors in the face of a terrible epidemic. Those murdered are the latest victims of the most malignant form of distrust. They will not be the last.