This is the first in a four-part series on vaping.
April 25, 2023 -- Rashelle Bernal vaped and ended up in an induced coma for a week. She was one of almost 3,000 people who were hospitalized during 2019 and early 2020 with severe lung damage from vaping and became part of what is now known as the epidemic of "e-cigarette or vaping product-associated lung injury" (EVALI).
For many, the EVALI epidemic is a distant, pre-COVID-19 memory.
But vaping-related injuries are still happening. And for Bernal, the aftermath is her reality. Her pulmonologist from that time described the harm from the vape ingredients as an oil spill in her lungs. Eventually, the toxins would probably clear. But she will likely wrestle with the injuries for a very long time.
More than 3 years later, she frequently finds herself in the emergency room.
“If I get sick, if there's anything that irritates my lungs -- it could be something as simple as pollen in the air – it will cause me to get like a bacterial infection or other issues, and I can’t breathe,” Bernal, now 30, said. “I get really winded, to the point where I'll walk up the stairs and I feel like I just like ran a mile.”
In 2019 and 2020, a media firestorm erupted as hospitals notified the public of outbreaks of vaping-related lung injuries. News headlines reported e-cigarettes were killing teens from Texas to the Bronx. Investigators at the CDC tracked most of the cases to vitamin E acetate, an additive in illegal cannabis vaping products intended to promote the metabolism of THC, the compound that produces marijuana’s “high.” The agency stopped tracking EVALI in February 2020.
But in April 2020, the agency’s National Center for Health Statistics implemented a diagnostic code, U07.0, for health providers in the United States to diagnose EVALI for the first time. The code is also used for lung damage related to use of e-cigarettes and dabbing, a method of inhaling cannabis. Damage could include inflammation of the lungs, pulmonary hemorrhage, and a type of pneumonia.
Cases appear to have risen sharply since 2020. In the last 3 months of 2020, 11,300 medical claims included the U07.0 code. That figure rose to 22,000 in 2021 and hit 31,600 in 2022, according to data compiled for and provided to Medscape – WebMD’s sister site for health professionals -- by Komodo Health, a health care technology company. Komodo holds a database of more than 330 million U.S. patients from Medicare, Medicaid, and commercial insurers’ medical, pharmacy, and laboratory claims.
Harm from vaping, including EVALI, has continued.
“We’re still seeing a number of patients diagnosed with vaping disorders, but it’s not at our top of mind,” said Usha Periyanayagam, MD, MPH, head of clinical product and real-world evidence at Komodo Health and a former emergency medicine doctor.
Where It Started
Devika Rao, MD, a pediatric pulmonology specialist at UT Southwestern Medical Center in Dallas, has cared for most of her EVALI patients in the hospital, with the most recent case in early 2023. But in January, for the first time, she saw an EVALI patient in an outpatient clinic. The person had not been admitted to the hospital like most were pre-pandemic. And like most who were seen during the pandemic, this patient had milder symptoms, not requiring intubation or take-home oxygen.
In 2019 and the beginning of 2020, many EVALI patients who were eventually hospitalized first sought help at urgent care centers or with primary care doctors and were presumed to have pneumonia or gastroenteritis and sent home.
“But they got worse and they would present to our emergency room; their chest X-rays and CT scans showed extensive lung disease,” Rao said, adding that the damage was striking among patients all under age 18. “They were short of breath. Their oxygen levels were low. They had diminished lung function. And they had a lot of GI issues like abdominal pain and weight loss from nausea and vomiting.”
EVALI’s impacts are different from smoking cigarettes, said Karen M. Wilson, MD, MPH, a pediatric hospitalist at the University of Rochester Medical Center in New York and a tobacco use researcher. “You might find some microvascular changes with normal inhaling of smoke or aerosol, but you're not going to find macro changes like we see with the EVALI.”
In late 2019, images of the CT scans of patients with EVALI were published, grabbing the attention of Arun Kannappan, MD, an assistant professor of pulmonary sciences and critical care at the University of Colorado Anschutz School of Medicine in Aurora. Kannappan knew that a patient with lung damage this severe could develop acute respiratory distress syndrome, which means a patient would be put on a ventilator because their inflamed lungs could not oxygenate blood.
“That confers within somewhere between 30% to 50% chance of dying; it made all of the pulmonary specialists really turn their heads to make sure that we keep a lookout for it,” said Kannappan.
CT scans of lungs proved to be a critical diagnostic tool for doctors. Most of the images from patients showed acute inflammation and diffuse lung damage. Ehab Ali, MD, a critical care and pulmonary disease medicine specialist in Louisville, KY, said the damage was often spread across both lungs in many areas and appeared opaque and hazy, known as “ground glass.” COVID, meanwhile, appeared differently in lung scans, often with damage that was more isolated.
But many diseases carry a “ground glass” appearance, with many potential causes like infections, cigarette smoke, or an autoimmune condition.
“Before you even talk to the patient, you can immediately put it in your mind that ‘I'm going to ask this patient if they vape,’ when I see the distribution of ground glass appearance,” Ali said.
Ali said other factors, like the age of the patient -- about three-quarters of EVALI patients are under age 34, according to the CDC -- would spur him to ask about vaping. But because so many patients were young, figuring out vape usage wasn’t always easy.
“When you're talking to teenagers, if you ask them upon admission, with the parents in the room, they're going say ‘no,’” said Rachel Boykan, MD, a pediatric hospitalist at Stony Brook Children’s in Stony Brook, NY. She added that her hospital is still seeing cases.
Rao said it often takes two to three people asking a patient about any vape usage before they confess.
Bernal, who was 27 at the time of her hospital admission for EVALI, said she bought vapes with THC at a retail shop in California. She’d been a traditional marijuana smoker, using the leaf product, but switched when someone told her it was healthier to vape THC than inhale smoke from burned marijuana leaves into her lungs. “I thought this was safe.”
Rao and her colleagues recently published a study of 41 teenage patients with EVALI who were seen at Children’s Medical Center Dallas between December 2018 and July 2021. All but one reported using e-cigarettes containing THC, and the CDC in its most recent report from February 2020 said about 80% of patients had used vapes containing THC.
The CDC also found that vitamin E acetate, an oily substance that allows THC to travel from the lungs to the brain quickly and an ingredient used in the food and cosmetics industries, was found in many of the lungs of EVALI patients, though not in all.
The outcomes of the thousands of patients who had EVALI, and may still be developing it, are largely untracked.
Bonnie Halpern-Felsher, PhD, director at the Stanford Reach Lab and a researcher on tobacco in youth, said she and many of her colleagues are frustrated that the CDC is not continuing to collect data on EVALI.
“I know a lot of colleagues who've said that they're still seeing EVALI, but because of COVID-19, they stopped collecting the data and that's been very frustrating because it's hard to say whether the kinds of lung issues you're having are related to e-cigarettes generally, or EVALI,” Halpern-Felsher said.
Researchers and doctors affiliated with the American Thoracic Society in January published a report with solutions on how to better track EVALI. They recommended that a national case registry and biorepository be created.
Doctors also worry that many cases were missed. Boykan said that while protocol dictated nurses and other health providers ask about a history of vaping, a key part of EVALI diagnosis, many did not. Ali said EVALI symptoms of nausea, cough, and fever are associated with viral infections.
Rao also said the treatment regimen at Children’s, which included high doses of intravenous steroids, seemed to help. But the best management approach for treatment, or long-term follow up care, has not been studied.
The report in the Annals of the American Thoracic Society said studies are showing that a significant portion of patients with EVALI experience prolonged respiratory issues and cognitive and mood impairment. Rao said a common thread for many of her EVALI patients has been significant stress in their lives with school or family, which led them to vape in an attempt to reduce stress.
That was certainly the case for Bernal before her hospital admission. She had recently moved across the country for her husband’s job, was trying to buy a house, and had spent months in a hotel with three children. She vaped to cope.
But she said her mental and cognitive health has worsened. Back in Louisville, she saw a neurologist, who told her that her brain had shrunk, she said. She hasn’t found a new neurologist in Portland, OR, where her family moved a year after the EVALI episode.
But she often finds herself overwhelmed and overstimulated with tasks that she said she never had problems with before. She tears up while talking about the newfound limitations. She struggled to find a primary care doctor who could manage her mental health and a counselor who can understand what she’s been through with EVALI.
But “a lot of doctors aren't educated in it, and they don't know how to respond or they don't know what to do,” Bernal said. “And that makes me feel like, I guess, what I had wasn’t important.”
Bernal does have a new pulmonologist and is going in for a round of pulmonary tests soon because she often finds herself unable to breathe while completing simple tasks. She is tired of rushing to the ER. She wants answers, or some kind of treatment to help her feel normal again.
“I feel like this is my fault.” Bernal said. “Had I not smoked, I would be fine, and that's hard to live with every day, telling yourself, ‘it's your fault.’ It's been how many years now? And I still haven’t found peace yet. I don't know if ever will.”