Sunday, April 6, 2014

CASAA is truly grassroots, not a 'front group'

I recently came across a blog post about e-cigarettes that had this in the comments:
What strikes me about CASAA is that the board is stacked with power players: lawyers, smokeless tobacco lobbyists and web marketing experts. Not a random assortment of Americans, but exactly what a company would seek out as a PR front.
Once I stopped laughing at "stacked with power players" and picked myself up off the floor, I wanted to set the record straight.

CASAA, The Consumer Advocates for Smoke-free Alternatives Association, was formed in 2009 on an online e-cigarette enthusiast forum. Here is a thread discussing the creation of the organization, before it even had a name: ECO - Organization Charter: Administration and here you can see a lot of the democratic process that went into the name and organization. Clearly, CASAA was not formed by e-cigarette or tobacco companies as a "PR front."



During that time, members of the forum were becoming increasingly alarmed by the negative publicity being generated by public health groups such as the American Lung Association, American Cancer Society and Campaign for Tobacco-free Kids, and attempts by the FDA to stop shipments of e-cigarette supplies from entering the country. It was a genuine shock to see these groups, which had been pushing for us to quit smoking for decades, come out against e-cigarettes. In our naivety, we thought we just needed to show them how these products were working for us and they would come around. Surely, we thought, once they hear our stories about quitting smoking and improved health, they would support e-cigarettes.

We soon found out that their objections to e-cigarettes had nothing to do with health and quitting smoking. It didn't matter if the devices worked for adult smokers. It became apparent that they were more concerned about the possibility that some youth may use a low-risk alternative than how that low-risk alternative had the potential to save millions of smokers. In our minds, that was akin to banning seat belts because of the small risk that they could trap a person in a car wreck. Sure there is a small risk of that happening, but it is widely accepted that the benefits of seat belts far outweigh that small risk. Similarly with e-cigarettes, we felt it was clear that the small risks of some kids using them - kids who would have likely been smoking traditional cigarettes anyhow - were far outweighed by the benefits of millions of adult smokers no longer inhaling cigarette smoke. But the fact that e-cigarettes were enjoyable, contained nicotine and looked like smoking was more than the public health groups could tolerate. Their goal is to eliminate all tobacco and nicotine use, so a product that mimics smoking and allows anything but complete abstinence is unacceptable, even if it can save millions of lives. Only their way - quit or die - will be tolerated.

I found e-cigarettes at a state fair. Typical of most e-cigarette consumers at the time, I wasn't looking to quit smoking. I was pretty sure I'd smoke until I died. However, at 39, my daughter was born and I was concerned about living long enough to see her grow up and have kids some day. When I heard the "pitch" at the e-cigarette booth, I was intrigued by the low cost compared to smoking and fact that they eliminated smoke. I was already aware that it isn't the nicotine that is linked to smoking-related diseases, but the smoke itself, so it was easy to see how eliminating the smoke would be hugely beneficial. Additionally, as a real estate consultant, I liked the idea that the e-cigarettes would not leave an odor on me that my clients would smell. Typically, I was ashamed of smoking and feared I would be judged negatively for being a smoker. A bonus feature was that e-cigarette use was not included in the State's recently passed smoke-free air law. In Wisconsin, it's a definite incentive to not have to step outside to use an e-cigarette in the cold winters. I became part of the e-cigarette phenomenon of "accidental quitters" - smokers who weren't even trying to quit, but still ended up quitting cigarettes by switching exclusively to smoke-free e-cigarettes. (Unlike with FDA-approved gums and patches, which only attract smokers who are actively trying to quit and still fail 97% of the time.)

But by far the most appealing aspect of e-cigarettes was that I could eliminate nearly all of the health risks without feeling like I was giving up smoking. I wasn't concerned about the addiction aspect of smoking, just the health risks. Like many other e-cigarette consumers, the addiction itself wasn't the issue, so e-cigarettes allowed me to "have my cake and eat it, too." Of course, that is appalling to the ANTZ ("Anti Nicotine and Tobacco Zealots", who put ideology and their tobacco and nicotine-free dream ahead of the health of 42 million smokers.) How could anyone not care about being addicted to nicotine? Inconceivable! Don't all smokers want to be nicotine free? Apparently not, as e-cigarettes have exploded in popularity with smokers who don't care about "addiction," but don't want to die from smoke, either.

Also typical of the time, my e-cigarette looked and somewhat tasted like a traditional cigarette. However, the flavor only served to make me want the real thing and the tiny batteries were not dependable. So, I sought out better batteries and flavors, finding myself at the e-cigarette forum. Not only did I find better devices and flavors such as chocolate and peach existed, much to my horror, I found out that health groups and the FDA were trying to ban the devices. All of the coverage in the media was unquestioning of this, so I felt compelled to write my own article about e-cigarettes and let consumers tell their story. That resulted in "Negative Reactions Mystify Electronic Cigarette Users," published on Yahoo! Voices in September of 2009. Shortly afterwards, along with 12 other forum members, I was nominated and elected by members of the e-cigarette forum to be a charter director of the new, as-of-yet-unnamed e-cigarette consumer organization.

So, how did CASAA become "stacked with power players?"

CASAA "power players" discuss issues at the first
live member meeting at VaperCon in 2012
Well, e-cigarette consumers may be a little eccentric, but they aren't stupid. Those nominated all had some characteristic that members felt would help the organization succeed. This included doctors, lawyers, previous non-profit experience, web design experience, community involvement and in my case, a previously untapped knack for writing. Because most e-cigarette stores at the time were run by e-cigarette consumers, who became entrepreneurs to help others switch to e-cigarettes, they were allowed to join as members and even serve on the board of directors. In order to remain consumer-focused, however, the organizational bylaws restricted the number directors with financial ties to the "industry." The number of directors with industry ties are kept in the minority and will never be allowed to outnumber the consumer representatives. That way, consumer interests always take priority.

Even with all of those "power players," CASAA struggled to survive. Several of the elected directors never even made it to the first online Skype meetings. A year after the election, only 5 of the 13 original directors were actively participating. By the end of 2011, the first president had resigned and only 3 of the original board of directors remained. It became a matter of "fake it until you make it."

Since then, CASAA added and lost a few directors until we came to the board of directors we have today. In addition to three of the originally elected directors (myself, a former real estate consultant, now a work-from-home mom; Elaine Keller, a retired vocal coach with a talent for writing and non-profit experience; and Drew Gliem, an e-cigarette retailer and consumer, also with extensive non-profit experience,) the current (2014) board includes Michael Cozzi, an active e-cigarette video blogger and community activist with expert web and computer skills; Karen Carey, an outspoken community member and professional accountant; Julie Woessner, a respected  community member and retired attorney; Dr. Carl Phillips, a non-vaping epidemiologist with extensive experience in tobacco harm reduction science and policy (we considered it a real coup when someone of Dr. Phillips' caliber agreed to join us); and Ron Ward, another e-cigarette consumer activist and attorney, who has just opened an e-cigarette store in Maryland. None of us are professional lobbyists, nor are we paid by tobacco or e-cigarette companies to serve as CASAA directors. In fact, we aren't paid at all. CASAA is definitely not an "e-cigarette industry group." We do this because we are passionate about tobacco harm reduction and possibly because we may be a little bit crazy.

Our dedication has paid off. In the 4 years since our inception, we have grown from a few hundred members to nearly 12,000. We have collected over $100,000 in member donations, our members contributed over $25,000 for a  research grant resulting in a comprehensive study of e-cigarette chemistry, we've met with the FDA and countless other government officials and representatives, networked with the e-cigarette and tobacco industries and the scientific community, developed a reliable and expert reputation, changed the once entirely one-sided dialogue in the media and inspired and assisted dozens of local advocacy groups across the country and around the world.

To use the old cigarette slogan: "We've come a long way, baby."

CASAA is also more than just an "e-cigarette advocacy group." From early on, we made the conscious decision to advocate for all smoke-free alternatives, not just e-cigarettes. Much of what we believe is true about the low risks of e-cigarettes is actually based on decades of research on smoke-free tobacco products, such as snus - rhymes with "goose." (Read: Smoke-free Health Effects) CASAA's support of the users of other smoke-free alternatives is very important to me and had a huge impact in my decision to become and stay involved. Unlike my experience, my husband did not immediately quit smoking when he started using e-cigarettes. He found that there was "something missing" with them and couldn't give up those last couple of traditional cigarettes a day. One day he mentioned the possibility of using snus, a product he had used in the past, but I had never heard of.

Of course, my first reaction was to say "no way," because I worried about oral cancer - the main danger we hear about smokeless tobacco from the health groups. But I did my due diligence and researched it. I found out that, in spite of the required warnings on the labels, decades of research has shown that snus has no increased risk of any cancer or disease. Even the risks of using products like "chew" are extremely low and smokers and heavy drinkers have much higher risk of oral cancer than smokeless tobacco users - and the public health groups have known this and not told smokers the truth!

These are the same groups misleading the public about e-cigarettes today. Suddenly, I could no longer trust anything I had ever learned as "fact" about tobacco. Everything that came out of the ALA, ACS, CDC and FDA was suspect. And for smokers like my husband, who find "something missing," (I "guess-timate" at least 25% of e-cigarette consumers) it is extremely important they also know about and have access to low-risk, smoke-free alternatives like snus, not just e-cigarettes. Once my husband started using the snus, alternating between it and his e-cigarette, he was able to give up those last few cigarettes a day. For this reason, you will never hear me worry about disassociating e-cigarettes from "tobacco," because I know that low-risk, smoke-free tobacco products are just as important (and safe) as e-cigarettes for tobacco harm reduction. I won't perpetuate the ANTZ lies about tobacco.

But there is still a long, hard fight ahead of us. The ANTZ still control the dialogue both with lawmakers and the media. We need our 12,000 members to start stepping up more and helping with the tasks that need to be done - tasks that the 8 volunteer members of the board cannot do by themselves. (See: How You Can Help) In true grassroots fashion, it is the regular members who will determine the success of the organization and in the end, whether or not reasonable and intelligent tobacco harm reduction policies will prevail.

If you think you don't have any power or ability to make a difference, remember this story about CASAA. A ragtag group of inexperienced e-cigarette consumers have built a growing organization of thousands and has become a force to be reckoned with. If we can do it, so can you. And remember - you won't be going it alone.

4 comments:

  1. Great blog, I am pledging my full support. I am emailing, tweeting, mailing letters, and will start phone calls to my representatives this week. We need to unite so people may break the hold of cigarettes.
    Chris

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  2. Excellent Blog Kristen! We will follow you to the promise land!

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  3. Wow, excellent! Thank you very much for this interesting history of CASAA!
    Best regards from Germany - Anja

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  4. As always great post Kristen!

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