Monday, September 23, 2019

CDC Investigation into Respiratory Disease Outbreak Has Contributed Absolutely Nothing to the Public's Knowledge So Far

Before the CDC initiated its investigation of vaping-associated respiratory illness (VARI) on August 1, here is what we knew about the outbreak:

This outbreak is associated with vaping. If you want to avoid getting sick, you should avoid vaping.

After nearly eight weeks of CDC investigation, here is what the CDC's current conclusion is about the outbreak:

This outbreak is associated with vaping. If you want to avoid getting sick, you should avoid vaping.

In other words, the investigation has added nothing in terms of public knowledge. Most importantly, it has added nothing in terms of specific steps that the public can take to avoid this life-threatening illness.

Frankly, it didn't take a rocket epidemiologist to issue the same warning that the CDC is now issuing. Any guy off the street could tell the public that the outbreak is associated with vaping and that to avoid it, you should refrain from vaping. After all, the name itself tells you that: "vaping-associated respiratory illness."  

The Rest of the Story

In distinct contrast to most of its investigations, it appears that the CDC has lost sight of the purpose of this particular investigation. It appears that the driving purpose of the investigation is to do everything possible to demonize electronic cigarettes, holding out as long as possible to continue to invoke legally sold, nicotine-containing e-liquids as being responsible for the outbreak, even in the face of contradicting information.

The CDC might defend itself by arguing that until it can identify with exact certainty what all the causes of the outbreak are, it must err on the side of caution and not draw any conclusions.

But that shows a misunderstanding of the purpose of an outbreak investigation. The primary purpose, beyond anything else, is to prevent further cases from occurring. By the precautionary principle, this means that you do not wait until you have a definitive and comprehensive, detailed understanding of exactly what is causing the outbreak and until you know all of the causes. Instead, it means that if you have reasonable evidence even of one particular cause, you need to explicitly warn the public to avoid that exposure.

Sadly, the CDC's communications regarding the investigation have added literally nothing to the public's knowledge of how to avoid this disease. Based on the CDC's communications, the public doesn't really have any more knowledge today about how to avoid the disease than virtually any guy off the street could be telling us. The CDC's message remains: "If you're concerned, then don't vape."

Any sixth-grade student, without any training in epidemiology, could have told us that all the way back on August 1. After all, the case definition requires that a patient must have a history of vaping. So by definition, every case that occurs is going to be associated with vaping, and if you don't vape, you cannot - by definition - get the disease.

I think that the CDC is not doing its job if after eight weeks of investigation, it cannot tell us anything more than some guy off the street.

We are trained in epidemiology for a reason. And I'd like to think that my years of training in epidemiology allows me to offer the public more specific than what some guy on the street can offer. If not, then why am I being paid all this money?

Although conducting scientific research, reviewing the scientific literature, and attending scientific conferences are all a part of how I have gained specific knowledge regarding vaping that allows me to hopefully contribute something meaningful to the public's understanding of this outbreak, what has by far prepared me the most is the fact that I have spoken to thousands of actual vapers. This is something that, frankly, the CDC has simply not been doing.

Instead of talking to vapers, they have dismissed the knowledge and experiences of vapers as being nothing other than "anecdotes." This is the term that previous CDC director Dr. Thomas Frieden used to describe vapers in 2014. Perhaps the CDC should have been spending less time belittling vapers and more time listening to them!

One of the things I learned very early on in talking to vapers, and in reviewing the literature, is that oil-based liquids should never be vaped. This was widely known to vapers back in 2012, a full seven years ago. The CDC should have known this going into the investigation but it appears that it still doesn't understand this critical concept. In fact, the CDC has yet to issue any warning against the use of oil-based e-liquids when vaping.

Both the epidemiological and clinical evidence point strongly to the likelihood that what is causing most (if not all) of the cases to become so sick is that the lungs simply cannot handle being doused with oil. Since virtually all nicotine-containing e-liquids are water/alcohol-based, not oil-based, this is not a problem with the overwhelming majority of traditional electronic cigarettes. That there may be a few rogue companies or suppliers selling oil-based nicotine e-liquids remains a possibility and cannot be ruled out. However, we do know that in the overwhelming majority of cases, the affected patients were vaping THC oils, not water-based e-liquids. And the primary manifestations of the syndrome - lipoid pneumonia and eosinophilic pneumonitis - are completely consistent with THC vape oil poisoning.

Perhaps the most important principle of risk communication in outbreak investigations that the CDC is violating is being honest and open.

As CDC itself writes in a manual called "Communicating During an Outbreak or Public Health Investigation":

"Risk communication literature identifies four factors that determine whether an audience, including journalists, will perceive a messenger as trusted and credible, including
  • Empathy and caring,
  • Honesty and openness,
  • Dedication and commitment, and
  • Competence and expertise."
There's no question that the CDC investigation is marked by high levels of empathy and caring, dedication and commitment, and competence and expertise. However, the one thing it appears to be missing is honesty and openness.

The CDC has been reluctant to tell the public that the majority of cases are associated not with vaping e-cigarettes, but with vaping marijuana. Where the agency has mentioned that "many" cases report vaping marijuana, it has immediately undermined that connection by stressing that no single cause has been identified for all cases, something that almost never happens in an outbreak investigation (not everyone remembers having eaten some of the potato salad).

The rest of the story is that any guy on the street could look at the information available today and conclude that these cases of vaping-associated respiratory illness are associated with vaping and that to avoid the illness, people should consider not vaping.

But I think we know a heck of a lot more than that and can do much better than that guy on the street because of our training in epidemiology.

1 comment:

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