by Carl V Phillips
It has been documented recently on twitter that the National Cancer Institute (NCI), at their smokefree.gov site, has been deleting stories of people quitting smoking by switching to e-cigarettes. (Apologies to whoever first broke the story — I cannot figure out who you are to give proper credit. We retweeted what was probably a retweet of a retweet.) At this page, NCI solicits stories of successful smoking cessation. They have like 200 of them! They would have a lot more, except that when someone reports quitting using e-cigarettes, they systematically delete it.
[UPDATE: I have been told that this forum discussion may be the reason so many were submitted and where the deletions were first reported. There is at least one call for posts that predates that, via CASAA, but the other is the earliest report of deletions I have found. Note that those are almost three months old, but complaints about the deletions did not go viral until this week.]
The U.S. government historically was, and possibly still is, the world’s most influential anti-THR liar, particularly including the Surgeon General, the National Institutes of Health (which includes NCI), and the CDC. These lies have undoubtedly killed tens of thousands of smokers, and conceivably hundreds of thousands given their reach. U.S. government agencies turned down their anti-THR lying a bit for a few years, but have picked up recently with a vengeance.
The lies at the NCI website are particularly egregious since it is very explicitly — in both its name and content — about stopping smoking. It does not claim to be generally anti-tobacco. That is great, since the NCI has no business opposing the use of forms of tobacco that cause trivial or no risk for cancer. (Indeed, it is not entirely clear what business NCI, a research institute, has in creating propaganda even against smoking, but that is a different story.)
I have seen at least a dozen reports from vapers who reported that NCI deleted their stories. There will probably be dozens more tomorrow since right now the most recent 15 entries, and another 14 of the next 20, are about e-cigarettes (thanks, presumably, to the twitter comments). The 16th comment and at least three older ones are by people observing that their entries keep getting deleted. (You might find those at the above link; click the “text only” button unless you want to mess with their silly “click on the map” thing (why, exactly, would anyone care where the people live??). Of course, chances those will be deleted by the time you go there, so I printed the page as it existed at the time of this writing if you want to see it.)
But unacknowledged deletion is not the only anti-THR lie on this site.
The site is relatively silent about smokeless tobacco, which is interesting because NCI was historically a leading anti-ST liar. The side does link to couple of documents that contain the usual anti-ST lies, including their own anti-smoking publication which, as an aside, lies:
If you also use smokeless forms of tobacco like chewing tobacco or snuff, you are still putting yourself at risk for oral health problems and cancer. Just because these products do not involve smoke, doesn’t mean they are safe. Smokeless tobacco is addicting and isn’t a healthier substitute for cigarettes.
Of course, the evidence does not support the claim that ST causes cancer or any other oral health problems (indeed, if you avoid the highly sugary versions, it plausibly has oral health benefits on net). Most of the government has learned to lie with plausible deniability, such that they would phrase that lie that cigarettes are no worse for you than ST as “not a healthy substitute”. This is a literally true statement that communicates the same lie to the reader, but lets them pretend to be telling the truth. (Though since, as I have pointed out, the act of carefully choosing words in order to lie with literal truths is arguably more unethical than just stating the lie, perhaps we should give them credit for this.)
The site does not, however, outsource the lies about e-cigarettes. At a tab on the page, NCI lies:
E-cigs aren’t regulated:
E-cigs contain other chemicals besides nicotine, which also get inhaled. Since e-cigs aren’t regulated yet, there’s no way of knowing how much nicotine is in them or what other chemicals they contain. These two things make the safety of e-cigs unclear.
Yawn. Not regulated — other than the thousands, perhaps tens of thousands, of regulations that apply to them. No way of knowing how much nicotine — except by doing what we do for every other product in the market, trusting the manufacturers to be telling the truth about the ingredients. No way of knowing what other chemicals they contain — other than the many tests that have been done on what chemicals they contain.
But good news! Since these apparently are the two things that make the safety unclear to NCI, and we know that they are wrong about them, the safety apparently is clear.
E-cigs haven’t been shown to be effective
There haven’t been any scientific studies that prove e-cigs actually help people to quit smoking. There is also concern that using e-cigs may lead kids to start smoking regular cigarettes.
That is the real kicker, since the very evidence that does show them to be effective is exactly what NCI is systematically deleting from the website. You would like to think that people at our national health science research institute would be familiar with what “scientific” means, but no such luck. (Your tax dollars at work!) They seem unaware that each and every one of those stories they are deleting is a scientific study in itself.
As for that “concern”: I am really worried that e-cigarettes represent a secret plot by a sleeper cell of space aliens to prepare for their eventual takeover of the Earth. (I mean have you seen some of the mods out there? If those are not evidence of alien design influence, I don’t know what they are.) So there is concern that e-cigarettes will lead to the enslavement of humanity, since all that word means is “someone once said they are worried about this.”
In fairness, their other bullet point is true:
E-cigs contain nicotine:
An e-cig is a battery operated (disposable or rechargeable) device that contains nicotine. The nicotine is turned into a vapor in the e-cig and then inhaled. The vapor looks similar to smoke. E-cigs come in all sorts of sizes and sometimes have flavored nicotine cartridges.
I think they are trying to suggest that this is a strike against e-cigarettes. I think that perhaps this means they are really clueless.
The bottom line is that we just don’t know enough about e-cigs, so we don’t recommend that you use them. There are other quit aids, with or without nicotine, that have been proven to be safe and effective at helping people quit smoking. But if you do choose to use an e-cig, we recommend that you be very careful!
A remarkably mild conclusion, actually (setting aside the lie that there are medicines that have been proven to be safe and effective). Ok, NCI, fine. Since you seem unaware of the vast body of evidence about e-cigarettes, it is fine if you choose not to recommend them. E-cigarettes do not need the recommendation of an agency that is not supposed to be in the recommendation business anyway. But that is no excuse for lying about something that you openly admit you do not know as much about as we do. It is most definitely no excuse for the government to censor citizens’ perfectly legitimate, honest, useful, topical comments at a website that they are paying for.
[UPDATE 2: A few CASAA members — at least I assume you are CASAA members!! — have already reported filing the suggested FOIA request (see comments). No use being redundant about this, so please forward whatever responses you get to board@casaa.org when you get them.]
Tobacco harm reduction, anti-THR lies, and related topics 
Pingback: NCI Lies About The Effectiveness Of E-cigarettes, Via Deletion And Explicitly • The Spinfuel News Blog
Well, so far my comment is still there. :)
But lets see how long it lasts!
If I get the chance, I’ll be filing a Freedom of Information Act request for copies of all entries deleted from their map, as well as for internal communication regarding whether or not to delete quit stories dealing with e-cigarettes.
Great idea. You are the FOIA guru, but let me know if you need any help from CASAA.
And here it is. THR advocates can send one of their own to NCIFOIA@mail.nih.gov
Dear NCI FOIA Officer:
This is a request under the Freedom of Information Act. Please confirm receipt of this e-mail.
I request that a copy of the following documents be provided to me: all “Smokefree Stories” submitted to http://smokefree.gov/journey that have been removed from the website from October 1, 2013 to January 20, 2014.
In order to help to determine my status to assess fees, you should know that this request is made as part of news gathering and not for a commercial use.
I request a waiver of all fees for this request. Upon information and belief, the National Cancer Institute is intentionally deleting stories [link to this blog post] from smokers who have quit smoking thanks to smoke-free tobacco and nicotine products like electronic cigarettes and smokeless tobacco. In or around December of 2013, I submitted my smoke-free story to smokefree.gov/journey, only for it to be later removed. Disclosure of the requested information to me is in the public interest because it is likely to contribute significantly to public understanding of the operations or activities of the NCI as they relate to the free and open exchange of ideas.
Thank you for your consideration of this request.
Sincerely,
Go Greg!!!
Ah, the NCI.
I was at a conference last year about Social and Affective Neuroscience (= what you aptly call ‘brain porn’). One of the talks was by a young lady from NCI, basically begging the audience to apply for NCI funding. ‘Even when you think your research is not about cancer, I can spin it for you to make look like it is about cancer! Come talk to me!’
I thought that was extremely odd. Surely there is enough research to do that actually relates to cancer? Apparently not, and apparently the NCI has entirely too much money.
Meanwhile, as a vaper I’m paying to crowd-fund actually useful research on ecigs. Because no government or health organization is willing to pay for that, apparently. It’s a funny world.
That is indeed an interesting story. Weird.
Based on the little information we have about it, it sounds like the study you are talking about could have easily gotten traditional funding.
If I were Farsalinos, I wouldn’t want to spend my precious funding on that study I think. Funding at Greek universities is probably a bit short in supply at the moment (it definitely is in my field, not sure about cardiology). And the study is not ‘real science’ IMO – ‘how widespread is this potentially dangerous component in eliquids that are on the market right now’ is a consumer matter.
It’s exactly the kind of thing I’d want the (various equivalents of the) FDA to do.
To their credit (I hope), the Dutch version of the FDA did buy up a bunch of eliquids a few weeks ago for analysis, but I have a feeling they’ll just be familiarizing themselves with what’s in them in the first place, and looking for contaminants that may creep in from PG/VG.
U.S. government grants are not limited to U.S. nationals. Contaminated PG probably does not contribute substantially to unwanted chemicals in ecig vapor.
You are right, of course, Carl, that each of the testimonials qualifies as a “Case Study Design”, which is one of several legitimate designs for scientific research. http://libguides.usc.edu/content.php?pid=83009&sid=818072
It’s surprising that the NCI is ignorant of the report published in the Lancet of an “Experimental Design” that compared e-cigarettes with nicotine, the nicotine patch, and e-cigarettes without nicotine. “At 6 months, verified abstinence was 7·3% (21 of 289) with nicotine e-cigarettes, 5·8% (17 of 295) with patches, and 4·1% (three of 73) with placebo e-cigarettes (risk difference for nicotine e-cigarette vs patches 1·51 [95% CI -2·49 to 5·51]; for nicotine e-cigarettes vs placebo e-cigarettes 3·16 [95% CI -2·29 to 8·61]).”
http://www.ncbi.nlm.nih.gov/pubmed?term=%28%28Bullen%5BAuthor%5D%29%20AND%20%22Lancet%22%5BJournal%5D%29%20AND%20e-cigarette
No matter how you interpret this study, it shows the NCI is wrong. If you interpret to mean that e-cigarettes that contain nicotine are at least as effective as the nicotine patch, then the NCI is wrong about e-cigarettes not helping people to quit smoking. If you interpret it to mean that none of the treatments worked, then the NCI is wrong about the patch being proven safe and effective.
Nice. I hadn’t thought of that dilemma. Even if they are too clueless about science to understand the value of individual experiments (case studies), there is that one (fairly useless) clinical study. If they are going to pretend (quite contrary to the reality) that clinical research is what is useful, then they are forced into the dilemma you note.
WHO, may I ask, is not being bought by big tobacco and PHRMA? Wow, is all I can say about the NCI’s ignorant take on e-cigs and their systematic deletion of testimonies from those of us who have used them to successfully quit smoking cigarettes.
It is sometimes tempting to blame opposition to THR to someone being bought, but it is (mostly) not realistic and sets up a false premise that interferes with effective action. NCI seem like pretty much as far from bribable as is possible — relatively little revolving door, direct tax funding. Bigger companies are happy to take advantage of stringent regulation that favors them over smaller competitors, and thus tend to lobby for such (note that this also includes the big ecig-only companies). But most tobacco companies are positioning themselves to be fairly indifferent about which product wins and pharma does not care that much about this little market niche to do anything other than business-as-usual lobbying and pushing of a few smaller organizations that they have easy control over. Those who make the mistake of thinking that is what is driving anti-THR (as opposed to the reasons I have outlined at the About tab, above) are at risk of misdirecting their efforts.
I just HAS to post my quit story. Hee hee
Patty Piazza
Date: Sun, 19 Jan 2014 20:26:27 +0000 To: pattypiazza@hotmail.com
My post has been removed a few times now,but i will carry on doing it until they stop removing and then people can read that after over 50yrs of smoking the only thing that worked for me was an ecig.Also since vaping for 11 months my COPd FEV1 readings have improved from 1.12 to 1.6.
OK, here’s a thought experiment. With the code savvy people that we know, why don’t we place a map on the internet that will allow anyone that has quit cigarettes by whatever means to place a pin on our map with their story or at least with what method they used to quit and use a color code or something. Also some data mining to determine if it’s legit or a troll.. I don’t know if this is possible but perhaps it’s worth a try..
Pingback: Quit Victoria - Success Stories from real life....
I understand your complaints about NCI, although I disagree with the name calling and gotcha mentality, but I’d like to hear vapors opinions on the use of e-cigs among youth, addition, and the influence of nicotine on the developing brain. Are ecigs safe to use for everybody, including nonsmoking children? And if not what would be appropriate regulation?
Hi, Steve. Glad to find you read my blog (at least when you stumble across old posts via a web search :-). Since this is an old post, and few other than us will read the new comments, I will go ahead and respond in detail even though I usually discourage discussions that are not specifically about the post at hand. (If you have seen what the comment sections of blogs in this space that do not enforce that turn into, you will understand.)
First, I don’t think I do any gotcha, which implies some kind of entrapment. I respond to things that others have written or done with no prompting from me. As for the unforgiving criticism, that is something you would understand if you were fighting against a billion dollar industry — the tobacco control industry — which does not hesitate to lie, cheat, and steal to further their goals.
While neither I nor anyone else can speak for vapers as if they were monolithic, there is general agreement among merchants and advocacy groups that selling to children is bad and should be banned. That is the law in most of the USA and merchants adhere even where it is not mandatory. The reason it is not the law in every state is that the tobacco control people have fought against bans on sales to minors. Yes, you read that right. I have written about that at length here. Basically it appears that they prefer that sales to minors continue so that they have an excuse to restrict sales to adults because of that. Like I said: lie, cheat, steal.
On the other hand, while this is the obvious position for merchants, it is a little more difficult for those of us who care about public health (not to be confused with anti-THR people who are part of the “public health” industry). Since almost all e-cigarette use (real use, not just trying them a time or two) among kids is among those who already smoke, they apparently largely serve the same harm reduction role in that population as they do among adults. No regulation could possibly stop kids from trying a few puffs in any case (note the much greater use of cigarettes, for which every possible attack under the sun has been tried, to say nothing of drugs that are per se illegal to possess or sell at all), so there is no point in burdening adults with futile attempts to do so, even if it did matter.
I wish we had good information on the effects of nicotine. We really do not. Most of the research on the topic comes from ANTZ, who cannot be trusted. They patently lie about epidemiologic results. It would be insane to trust them to not be lying in cases where it is far more difficult to check their work. The other faction producing such claims are the brain porn people who have a tool for seeing something happening in the brain and are looking for an excuse to use it and made unsupported claims about what it means. All in all, we (i.e., everyone) are remarkably ignorant on the subject.