Your Guide to the Mysterious “Vaping Illness” That Captivated Our Attention in 2019

The first smattering of cases were recognized in April 2019. By August, the mysterious illness had claimed its first lives. Months later, with the case count at 2,290 and 47 confirmed deaths, health organizations are scrambling to discover the cause of the vaping-related illness. Much is still unknown about the illness and its causes, but through the tireless efforts of state and local health departments, alongside federal agencies like the Food and Drug Association (FDA) and the Centers for Disease Control and Prevention (CDC), some important details have begun to emerge.

In early November, the CDC took an important step toward linking the known cases, announcing that a recent lab test of fluid collected from the lungs of 29 patients across 10 states revealed the presence of vitamin E acetate in all specimens. This marks the first time one particular chemical has been noted across an entire sampling, a potentially crucial breakthrough that the agency is pursuing accordingly. But given the limited sample size, it's important not to leap to any conclusions at such an early stage, so all possible connections will continue to be investigated. In the meantime, here's everything we know about the vaping illness so far.

What is vaping illness?

First, let's cover the basics. The condition has been given the term EVALI (e-cigarette or vaping product use-associated lung injury). Whether intentionally or not, it's an acronym that speaks directly to how little is known about the illness; thus far, the only solid link between cases is that those who fell ill reported a history of vaping or e-cigarette use. Sufferers typically report a gradual onset of early symptoms over days or weeks, including respiratory symptoms such as coughing, chest pain, and shortness of breath, as well as nausea, vomiting, diarrhea, fatigue, fever, and weight loss.

After onset, however, the deterioration of lung function is often swift. Many patients have developed acute respiratory distress syndrome, a progressive disease occurring in critically ill patients that's caused by fluid buildup in the lungs. That buildup overwhelms the lung's tiny air sacs — known as alveoli — preventing oxygen from circulating to the organs, which makes breathing arduous and ultimately threatens the patient's life. Remarkably, a full third of EVALI sufferers have been placed on respirators, a staggering statistic for an illness targeting such a large number of the otherwise young and healthy.

Who is likely to be affected by it?

Thus far, EVALI has hospitalized patients across 49 states, as well as the District of Columbia and the U.S. Virgin Islands. (As of November 5, Alaska remains the only state that has yet to log a single case.) It has struck patients from ages 13 to 75, with the median age for casualties hovering around 53, even as the median age for an EVALI patient remains at 24.

Robinder Khemani, a pediatric intensive care physician and clinical researcher at the Children's Hospital Los Angeles, speculated on that difference. "This type of pattern is common with other causes of acute lung injury," he explains. "If the injury is very severe, it can potentially overwhelm the lung and lead to failure of all the vital organs in the body, regardless of age. However, patients who have other health problems such as heart disease, other lung disease, cancer, etc., are potentially at higher risk for death because their other organs are not as healthy and may be more likely to fail." He joins the chorus of health experts urging everyone to stop vaping, but emphasized that "people with any pre-existing condition should be particularly careful."

Overwhelmingly, the people who are falling victim to EVALI are those who are vaping most frequently, and that group remains both young and male. Of the reported cases where the requisite data is available, the CDC reports that 70 percent of patients are male, 79 percent are under the age of 35, and a full 86 percent report the use of products containing tetrahydrocannabinol, or THC — the main psychoactive compound present in marijuana — suggesting that the chemical plays a marked role in this outbreak.

But while it's tempting to draw conclusions from these statistics, it's also impossible to ignore the outliers, like the 11 percent of cases in which the patient-reported use of exclusively nicotine-containing products, claiming no exposure to THC-containing products whatsoever. Without that overlap, experts have struggled to find a through-line linking the thousands of cases nationwide, and have launched investigations into a variety of possible causes.

What causes vaping illness?

That turns out to be an enormous question. In order to grasp just how many factors are in play, it's important first to understand the mechanism behind vaping, especially in how it differs from smoking. Beth K. Thielen, University of Minnesota fellow in adult and pediatric infectious diseases, offers a helpful explanation: "With both, the goal of the user is to convert the drug — typically nicotine or THC — into a gas form that can be taken into the body by breathing the drug. With vaping, there is typically a heating element powered by a battery that converts the liquid contents of the vape cartridge into a gas or aerosol. While the way they generate aerosols or gases is different, both smoking and vaping can deliver potentially harmful byproducts in addition to the drug."

With smoking, of course, we now know that those potentially harmful byproducts, include tar and carbon monoxide, ingredients e-cigarettes were specifically designed to sidestep. But in avoiding one potential contaminant, the largely unregulated vaping industry opened the door to a host of others. "Because there are so many different chemicals in vape products, with different producers offering different formulations, it can take some time to identify which chemical or combination of chemicals is causing the disease. People with severe lung disease may be too sick to provide accurate information until they are recovered, and because of legal implications, they may not be forthcoming about their exposures or where they're obtaining their supplies," says Thielen. Even more frustratingly, she adds, "Individuals may use multiple products, so it may be difficult to tell which caused their symptoms."

Accordingly, early leads — some more promising than others — cover a great deal of ground. There are investigations into particular brands, active ingredients, solvents, and even the design of vapes themselves. As reported by NPR, for example, of 86 EVALI patients interviewed in Illinois and Wisconsin, 66 percent reported using products labeled as Dank Vapes.

In its own experiment, NBC tested ten black market THC cartridges} for pesticides and discovered traces of myclobutanil in each. (Myclobutanil is a fungicide that, when burned, can transform into hydrogen cyanide, a poison.) As far back as February 28, scientists at the Johns Hopkins School of Public Health warned that the tiny metal coils inside an e-cigarette — that heat and ultimately aerosolize the liquid nitrogen — could be tainted with toxic metals like chromium, manganese, nickel, and even lead.

For its part, the vaping industry at large is pointing the finger at the unregulated black market. In a statement issued to the media in September, Tony Abboud, executive director of the Vapor Technology Association, said, in part: "There is clear and compelling evidence that demonstrates that the illnesses are caused by unregulated, black market THC and CBD products—not regulated nicotine vapor products." However, it's important to note that the entire e-cigarette industry is ultimately unregulated. In the decade that e-cigarettes have been on the market, the FDA has repeatedly delayed its review of e-cigarettes, a lapse the agency has vowed to address. In a recent congressional hearing, the FDA's acting commissioner, Ned Sharpless, acknowledged the agency's inaction and promised, “We’re going to catch up."

What's the current consensus?

But the potential cause that's gotten the most coverage of late has been vitamin E acetate, an oil that's gained popularity on the black market lately as a thickener for THC. Vitamin E is harmless in topical application on your skin, as well as in dietary and supplement forms, but when it crops up in vape cartridges, it seems to tell a very different story. Ellen Foxman, an assistant professor at Yale University School of Medicine's Department of Laboratory Medicine, explains: "Vitamin E acetate is an oil, and in general inhaling oils can be very irritating and damaging to the lung."

In early November, the CDC announced the results of the first lab test in which it had found a common chemical across every sample. That chemical? Vitamin E acetate. From the CDC's statement about the results:

But both the agency and the clinicians we consulted stopped short of labeling vitamin E as the sole, definitive cause of the EVALI outbreak. "The CDC has excellent methods to find the source of an outbreak if there is a single cause, such as a single bad ingredient," Foxman explains. "The fact that no particular ingredient or a particular supplier has been linked to all of the cases suggests that this is not a straightforward outbreak."

Okay, so what can we do?

In a statement released to Allure, the CDC reiterated its advice to all potential vape users: "CDC continues to recommend that people should not use e-cigarette, or vaping, products that contain THC, particularly from informal sources like friends, or family, or in-person or online dealers." Meanwhile the investigations into EVALI continue. "When complications of a behavior are rare, we need to observe many people doing that behavior before enough of those rare complications occur [and can be brought to] attention." She noted that there have been case reports of lung injury associated with vaping as far back as 2014, and maybe before. She adds that while vaping-associated lung injury has garnered media attention, the phenomenon itself is not new.

Given that e-cigarettes have been on the market for a decade, what we're seeing now is likely the result of explosive growth in the number of people — mostly young people — who are vaping. Foxman cites a recent study showing a 78 percent increase in the activity for high school students between 2017 and 2018, and a 48 percent increase for middle school students during that same period. "Over 3 million high school students (20.8 percent of students) reported vaping in 2018, compared to 1.5 percent (220,000) in 2011. If only a small percentage of e-cigarette users become sick with a severe illness, the number may have been too low to notice previously when fewer people were vaping."

As if to confirm that fact, the CDC noted in late October that the number of new cases was leveling off and even declining, likely due to the media attention and repeated warnings from clinicians. For a small fraction of vape users, the EVALI outbreak represents an unrecoverable tragedy. For the vast majority of others, it will hopefully continue to serve as a tragic but important reminder that the vape industry remains unregulated, and we should be extremely cognizant of what we're putting in our bodies.

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Originally Appeared on Allure