Consumer advocates are for real.
By Cheryl K. Olson
“My initial reaction is that I’m surprised. That’s not a sentiment I’ve heard from industry before,” said Danielle Jones, president of the board of the Consumer Advocates for Smoke-Free Alternatives Association (CASAA). I was passing on what I’d been told by industry sources: that consumer advocates should take the lead in correcting widespread public perceptions about nicotine harm reduction.
“From a personal standpoint, it’s a little disheartening,” she added. “Because that’s a lot of responsibility to put on underfunded nonprofit advocacy groups.” However, unlike industry, “we can’t get in trouble for saying whatever we want.”
Who are these harm reduction consumer advocates: Are they grassroots voices or artificial turf? What are they doing to change the narrative and to help individual smokers? What else could they be doing—and what is fair or reasonable to ask of them?
Not a ‘Smokers’ Rights’ Repeat
My first exposure to the CASAA was an email from its member coordinator, Kristin Noll-Marsh, in response to a Tobacco Reporter column. She asked me to join a “live YouTube advocacy show” as a guest that weekend. I was wary of lending my credibility to a consumer advocacy group that might turn out to be a corporate public relations facade. Although faux “astroturf” organizations are not unique to the tobacco industry, public health people remember well Big Tobacco’s late 20th century global strategy of founding “smokers’ rights” groups to fight the spread of smoke-free policies.
Happily, the CASAA turned out to be the real thing: a 501(c)(4) nonprofit advocacy organization dedicated (as its website says) to ensuring “the availability of a variety of effective, affordable, reduced-harm alternatives to smoking.” Founded in 2009, it sprang from an online forum for vaping enthusiasts stunned by attacks from anti-tobacco organizations on a product that had (by plan and by accident) turned them into nonsmokers. They were advocating for vaping as harm reduction years ahead of the legacy tobacco companies.
After our invigorating podcast conversation, I reviewed the CASAA’s impressive collection of online resources and got to know Danielle Jones, who helms the CASAA’s all-volunteer board of directors. (She’s a graphic designer by profession.) I’ve often said that most people in public health and politics don’t know smokers; it’s easy to treat them as abstractions instead of fellow humans. The CASAA puts faces on those smokers, collects their stories and seeks to amplify their voices. I’m embarrassed it took me so long to notice.
“Our approach, which is limited by funding,” Jones said, “is all about organically bringing people into the tobacco harm reduction conversation.” The CASAA works largely through social media (Facebook, Twitter and Instagram), including scheduled podcasts recapping news and events. The group also works to raise the profile of research and opinions from other sources.
The CASAA sells apparel, noted Jones, “so advocates can wear messages that provoke conversations out in the wild.” Projects in its pipeline include creating information pages about vaping geared toward the needs of physicians and researchers.
I asked Jones what the CASAA doesn’t do. It doesn’t endorse vaping products or companies. It also avoids engaging with youth, she said, “even to correct misinformation or help with school projects—we get a lot of those requests—as we would almost instantly be accused of trying to market or promote vaping to kids.”
‘I Want a Good Face for Vaping’
Alongside consumer groups such as the CASAA, there is an ecosystem of individuals influencing nicotine product opinions and behavior via social media. Jones referred me to Nicholas “Grimm” Green, a YouTuber and harm reduction advocate.
Back in 2009, Green was looking for something to cut back on but not to quit smoking. He enjoyed “the ritual of it, inhaling, exhaling, the smoke, everything about it.”
He stumbled across an online review by “this charming old bald man who had discovered vaping.” Soon, with the right device and flavor (root beer), “it was almost effortless to switch completely,” Green said. “And I knew I just had to tell other smokers about it.”
His mission to change the public perception of vaping involves a portfolio of activities. He reviews products on multiple social media channels, trying to “cater toward smokers” to help them find the approach that works for them, whether they become vapor hobbyists or want something more cigarette-like. He does a weekly YouTube livestream covering vaping news and opportunities to advocate (such as phoning politicians about particular legislation), often coordinating with the CASAA.
Green strives to respond effectively to misinformation on Twitter and Facebook, “engaging people as often as possible” through polite sharing of stories and research studies. “When you see [anti-vaping organizations] tweeting stuff about vaping causing brain damage, there’s a gut reaction to want to just yell at that person and call them names and tell them how wrong they are,” Green admitted. “But that’s not something that changes minds.”
He also works to amplify voices that others are likely to heed. “You retweet the more credible voices,” he said. “It means more if there’s a pro-vaping article or stance coming from the University of Michigan or any of these professors than a guy on YouTube with a throat tattoo.” Green is a fan of body art.
“I know what I look like,” he said. “So I try not to put myself out there so much. I want a good face for vaping in the United States of America.”
I mentioned that 2018 AP file photo, shown repeatedly next to news and opinion articles about vaping: a blond teen with acne and peeling black nail polish, sucking on a vape device. “That’s how they want to portray vaping,” said Green. “They don’t want to show you the 65-year-old grandmother who smoked her entire life who now loves strawberry cheesecake e-liquid.”
‘Not a Bot’
A 2021 academic paper, “#FlavorsSaveLives: An Analysis of Twitter Posts Opposing Flavored E-cigarette Bans,” illustrates the divide between academics and advocates. The authors tracked patterns of tweets pertaining to vaping, including flavor bans and safety fears, in 2019 to 2020. They noted that the state of California and the U.S. Congress “have investigated the role that social bots play in driving online discussions about e-cigarettes.” The spike in posts containing “not a bot,” they said, were “most likely to note that the backlash against e-cigarette regulation is not coming from automated accounts but instead real-life people who can vote.” Although the paper is not anti-vaping, its tone suggests that the authors never met any of those real-life folks whose tweets they analyzed.
Green was one of them. He recalled that, largely in response to e-cigarette or vaping use-associated lung injury misinformation, “we more or less mobilized a pretty large army of vapers to get on Twitter and make their voices heard. And when they saw this enormous spike in actual people getting on Twitter, those news reports came out that we weren’t real people. We got called bots.”
“That stings,” he said. “All we were doing was trying to defend our choice to not smoke cigarettes. So all these vapers started changing their Twitter handles to their real name plus ‘not a bot.’”
This throws some cold water on the idea that consumer advocates have inherent credibility. The emotions and history associated with nicotine complicate changing minds. Although organizations like the CASAA will accept funding from anyone, industry ties and control are often assumed. “People commenting online get called bots, paid shills, all the time,” affirmed Jones. “Our opinions as users of the products are constantly dismissed and trampled on as having some tie to Big Tobacco.”
“Vapers are so desperate for any recognition or public mouthpiece that we get susceptible to astroturfing,” said Green. “I don’t want to name names, but organizations have come in that have been associated with other, not-so-great organizations and tried to get vapers to do things or sign things or text things.” (The World Vapers’ Alliance and The 95 Percent were most recently outed as astroturf.) However, Green is optimistic that a steady drip of genuine engagement will pay off. “There is no magic bullet that will suddenly change the course of history for vaping. It has to be a slow, grassroots, honest consumer-based initiative.”
The Consumer Perspective
I asked Danielle Jones what the CASAA might do if it had more funding. Her wish list included “PR campaigns in print, digital and television, hold events and potentially hir[ing] a lobbying firm to help educate legislators.” They could expand their paid staff beyond one-and-a-half employees. Funding of research studies, by others and by the CASAA, are also on her list. She noted that researchers have recruited subjects through the CASAA’s lists but did not seek to involve the CASAA in their work.
The consumer perspective is newly prominent in health research. For example, the Patient-Centered Outcomes Research Institute (PCORI) has received millions of dollars from the U.S. Congress for effectiveness studies that give weight to patient circumstances and preferences. The nicotine user’s perspective surely deserves the same courtesy.