Monday, October 14, 2019

The CDC is Still Misleading the Public about the Cause of the Respiratory Disease Outbreak: Why?

Last Thursday, CDC finally revised its warning to the public about the vaping-associated respiratory disease outbreak to state clearly that vaping THC-containing products is playing a major role in the outbreak. It stated that: "The latest national and state findings suggest products containing THC, particularly those obtained off the street or from other informal sources (e.g. friends, family members, illicit dealers), are linked to most of the cases and play a major role in the outbreak. Therefore, CDC recommends that you should not use e-cigarette, or vaping, products that contain THC."

In addition, CDC finally recommended that clinicians test case patients for THC with a urine drug screen, something I recommended more than a month ago.

This is a huge step forward because prior to this, the CDC was hiding from the public the fact that THC vaping was playing a major role in the outbreak and failed to provide an explicit warning to stop vaping THC.

The Rest of the Story

However, the very next day, CDC issued the following Tweet:

"CDC and @US_FDA have not identified the cause or causes of lung injuries associated with e-cigarette, or vaping, products. The only commonality among all cases is patients report the use of e-cigarette, or vaping, products."

This is a meaningless statement because in an outbreak investigation, one almost never finds a commonality that ties together every single one of the patients. If you did, you wouldn't need a special CDC team to investigate it. The cause would be quite obvious. In fact, the reason why an epidemiologic investigation is necessary to identify the cause of a disease outbreak is that not all the cases report a common exposure and so special epidemiologic methods are required.

For example, in 2017, CDC investigated an outbreak of Salmonella poisoning in which there were 19 identified cases in seven U.S. states and British Columbia. Many, but not all of the 19 cases reported eating pre-cut coconut pieces from grocery chain A. Specifically, 12 of the 19 cases (63%) reported eating pre-cut coconut pieces from grocery chain A. Records collected at grocery chain A locations and distribution centers uncovered that many of the cases had consumed products from a potentially contaminated lot of pre-cut coconut pieces imported from Indonesia.

The CDC did not tell the public:

"CDC has not identified the cause or causes of grocery A-related Salmonella poisoning. The only commonality among all cases is patients report having shopped at grocery store A. Most of the cases report having eaten pre-cut coconut pieces. However, no single product was common to all of the cases. CDC recommends that people who are concerned about Salmonella poisoning should consider not shopping at grocery chain A."

What did CDC do? They concluded that the pre-cut coconut pieces were the source of the Salmonella outbreak and facilitated a recall of these products. They don't close every one of these stores down completely because they weren't able to find a single product that was common to all of the cases.

Note that unlike youth THC use, there is no stigma associated with eating pre-cut coconut pieces and it is perfectly legal. So even without a good reason for under-reporting, the CDC was still able to identify a common exposure in only 63% of the cases. In fact, they did go back and re-interview some of the patients and in at least one case, they found a store receipt proving that the person had purchased pre-cut coconut pieces even though they had denied it.

If that can happen for pre-cut coconut pieces, then one would certainly expect under-reporting to occur for the use of illegal black market THC vape carts purchased from drug dealers on the street.

I have never before, in any outbreak investigation, heard the CDC withhold a specific warning because not every case reported a common exposure. There is something underneath the surface that is making the CDC reluctant to provide the public with the information and warnings that they need in order to curtail this outbreak.

The rest of the story is that the CDC's communication about the cause of this outbreak has been steadily improving, but we still have a long way to go.

Like the Telephone Game, CDC's Lack of Clarity is Becoming Completely False Facts at the Local Level

Do you recall the telephone game? Players sit in a circle and the first person whispers a phrase into the ear of the second person, who whispers it to the third person, and so forth, until it gets to the last player, who then repeats the phrase that they heard. Typically, the phrase changes substantially from the beginning because a series of small, progressive changes add up to a completely different phrase at the end.

The only way to prevent this is for the first person to deliver such a clear message that it cannot be mistaken.

In this commentary, I show how the lack of clarity by the CDC and other health groups in communicating about the health risks of electronic cigarette use is leading to the dissemination of completely false information at the local level.

The Rest of the Story

In an article in the Williston Herald (North Dakota), a respiratory therapy care manager at CHI St. Alexius Health in Bismarck informs the public about the vaping-related lung disease outbreak that we are experiencing. She has apparently been involved in the management of several affected patients in North Dakota.

In the article, she tells the public that: "Propylene glycol is not water soluble, and that could be behind the recent vaping illnesses that are emerging. “The lungs don’t tend to absorb anything that is not water soluble, so they can’t get rid of it,” Backman said. “So those patients we are hearing about in the news who come into an ER or hospital are the ones heavily using these devices.”"

She did get some of the facts right. It is true that the lung has difficulty getting rid of oil-based liquids and that many of the outbreak patients who come into the hospital are using vaping devices with THC oils that are not water-soluble.

However, she gets one key fact wrong: "Propylene glycol is not water soluble," she tells the public, implying that the inhalation of propylene glycol is what is likely causing the outbreak. But propylene glycol is soluble in water and is almost certainly not the chemical responsible for the outbreak. If it were, we would see as patients many vapers of all ages using virtually all brands of nicotine-containing e-liquids, including many products sold at retail stores. If nicotine liquids were oil-based, I would be the first one telling everyone not to use e-cigarettes because they  pose a high risk of developing a potentially fatal lung disease.

I do not completely blame the individual who was passing along this misinformation because when the CDC communicated to the public about the fact that many of the identified case patients were presenting with lipoid pneumonia, it did not explain that all nicotine-based e-liquids sold in stores are water-based and thus cannot be the cause of lipoid pneumonia, but that many black market THC vape liquids are oil-based and must be avoided. This has apparently led to massive confusion among the public.

The rest of the story is that our communication about the health risks of vaping has been a complete failure. The public health community has completely fouled this up. This example shows how the lack of clarity at the level of the CDC can ultimately result in the provision of completely false information at the local level. This is why it is essential that CDC be as clear as possible in its messaging, something it has largely failed to do during this outbreak investigation.

Friday, October 11, 2019

News Headline Shows How Misinformation About Respiratory Disease Outbreak is Spreading

The featured headline of a news article published yesterday at (the North Jersey Record) was: "Vaping with JUUL Damaged NJ Woman's Lungs, Left Her Hospitalized."

The headline of the article itself read: "'My Lungs Were Chemically Burned': NJ Victim Speaks Out Against Vaping."

These headlines certainly give the impression that this unfortunate 21-year-old woman developed acute respiratory failure due to her use of JUUL.

If true, this would be an absolute disaster because there are an estimated 7 million JUUL users.

This is no doubt going to contribute to the public's belief that electronic cigarettes sold at retail stores, not tainted THC vape carts sold mostly on the black market, are responsible for the terrible respiratory disease outbreak that has now affected nearly 1,300 people and caused 26 deaths.

The first paragraph of the story reinforces the impression that JUUL was the cause of this woman's respiratory failure: "[She] started smoking cigarettes when she was 17 or 18, she said. Hoping to find a “safer alternative” — one that wouldn’t leave a smell — she picked up a Juul, a popular electronic cigarette device, and began vaping."

The Rest of the Story

It isn't until you get to the fine print that you found out the following:

"[She] began using vaping devices more and more, eventually taking hits almost every 10 minutes, she said. She first had other people purchase her vapes, and she began buying them from stores and unregulated dealers as soon as she was old enough."

Since nicotine products sold by retail stores are all regulated, it appears that by unregulated dealers she is referring essentially to illegal, black market products.

Of course it is not clear what specific product caused the illness. However, it certainly cannot be definitively attributed to JUUL since the patient was also apparently purchasing black market vaping products as well.

One must look at the overall epidemiologic data, and what those data tell us is that the vast majority of affected patients admit to vaping THC cartridges, most of which were purchased off the street or over the internet, not from licensed retail stores.

But this story illustrates how easy it is for misinformation to be disseminated widely enough so that the public gets the inaccurate impression that JUUL products are responsible for this outbreak. There are plenty of dangers associated with youth use of JUUL - namely, the potential for addiction - but acute respiratory failure is not one of them. If it were, we would certainly be seeing numerous cases of the illness among adults of all ages who report using JUUL.

Although there may be a tendency to blame the media, I believe that the media coverage is actually framed largely by the way we as health professionals communicate the information to the media. And I think the coverage is most profoundly influenced by the way the CDC has communicated about the causes of the outbreak.

While the CDC's most recent communication finally admits that THC vaping products are playing a role in the outbreak, it may be too little too late. The public clearly has the impression that your every day, retail sold, nicotine-containing e-cigarettes are what is causing this outbreak. This is reflected by large reductions in the sale of these products over the last few weeks.

Sadly, the tragic consequences of this failed communication include an increase in the sale of real cigarettes (as many vapers try to avoid the alleged risks by switching back to smoking) and I suspect a larger number of people continuing to use THC vape carts than would be had the CDC been transparent from the start.