AKA: People with lived experience.
The latest volley started with a tweet by Vital Strategies. It states, “Harm reduction saves lives. Our Overdose Prevention team is at the Harm Reduction International Conference #HR25Bogotá this week. We've teamed up with author Jessica Hoppe to spread the word on the pivotal role of health-centered solutions, including harm reduction, to end the overdose crisis.” The tweet includes the link to Hoppe’s video, where she shares her story.
Her words are heartfelt. I related strongly to her experiences with losing loved ones to the use of a substance. I valued her plea for people to share their stories.
While I’m writing this, there are six replies to the Vital Strategies (VS) tweet. The replies all come from people wondering why Vital Strategies doesn’t support harm reduction for people who use nicotine when they support harm reduction for other substances.
Ziauddin Islam wrote his thoughts about the hypocrisy of supporting harm reduction for substances except nicotine and posted them on LinkedIn. It is evident that he is frustrated with and suspicious of VS’s Bloomberg funding.
But he is not the only one with suspicions! Oduor Kevin shared some of his own thoughts on LinkedIn. Thoughts that, to me, come straight from #OuchTown. He does not see or hear consumers expressing concerns over VS’s lack of support for reducing the harms of smoking tobacco. Instead, he saw “a wave of orchestrated responses from tobacco industry sympathizers, who sought to hijack this conversation by demanding the same legitimacy for “tobacco harm reduction”—a term increasingly weaponized to market alternative nicotine products like vapes, heated tobacco, and nicotine pouches.”
Yes, it was painful for me to read that. I don’t like seeing someone try to discredit the voices of the people trying to share the importance of tobacco harm reduction. So, two men who, like the rest of us, are in this space because the issue is important to us, disagree. Will their suspicions ever allow them to have an open and non-confrontational conversation with each other?
In the past few weeks, there has been a lot of buzz about the FDA cuts, what is happening to former CTP staffers, frustration with Bloomberg, and a resurgence of the ten-year-old myth about vaping causing popcorn lung. It’s enough to wear a person down.
Some people think we need to be more grassroots, while others believe we must start at the top and work our way down. I’m game for both, but starting at the top is a place I don’t know how to start from. I wish I could meet and speak with Mike Bloomberg, but my life does not intersect with his. We live in different worlds.
If anyone reading this knows Michael Bloomberg, please tell him I’d like an opportunity to talk to him about harm reduction. He’s an incredibly smart man, and I think if he’d agree to combine his intelligence and his passion for protecting kids with my passion to end death by smoking, we would be a powerful team. We could accomplish both goals.
Now, I know that some of my readers are going to be quick to point out that Mr. Bloomberg has already received an invitation to speak to experts about reducing the harms caused by smoking and declined. The experts tried again and sent more information, but were still denied an opportunity to speak personally with Bloomberg.
That was in 2021. Youth use has dropped since then. We know more now than we did in 2021 about tobacco harm reduction. I think it’s time to try again. I’m a small-town gal. It scares the heck out of me to go to Washington, DC. I have no idea how I’d handle going to New York City, but to talk to Mike Bloomberg, I would guarantee I’d find a way to deal with a city that big. I’d gladly work overtime or take a second job to pay for my trip. I hear NYC is even more expensive than DC.
In The Shawshank Redemption, Andy Dufresne goes on a letter-writing campaign and doesn’t stop until he gets what he is asking for. Even then, he doesn’t stop; he doubles his efforts and gets more books for the prison library. While the story is fictional, I think it provides an important life lesson: NEVER GIVE UP.
So, while we’re frustrated with Bloomberg-funded organizations and wish Bloomberg would talk to us, we’re past due sending that man another letter. And as we continue to point out the many health organizations sharing misinformation about tobacco harm reduction, I think we need to think about sending those folks MORE LETTERS and MORE OFTEN, too.
Let’s keep inviting them to sit at the table. Each letter has the potential to convince someone to talk to us.
I know everyone is busy, and composing a well-documented letter is a lot of work. But what if we set a goal? Perhaps we could write at least one letter per month, each of us taking turns. The author chooses the person or organization to whom the letter is addressed. We would act as peer reviewers and co-signers of each letter.
We will never know if we don’t keep trying.
May the Fourth Be With You! Happy Star Wars Day!
Until next time…
P.S.: Speaking of using our voices, none of us has only one type of lived experience that could benefit from lending our voices. Myself included. At times, I use my voice outside of the nicotine space.
Ted Kyle, founder of ConscienHealth, introduced me to three obesity researchers who wanted to write a commentary about the need to include the voices of neurodivergent people in the obesity space. They were looking for someone with lived experience to co-author with them. I am honored that they included my voice with theirs.
On the last day of Autism Acceptance Month and the eve of Mental Health Awareness Month, we discovered our commentary had been published. The timing was perfect! (Think about who is still smoking!) Thank you, Ted, for opening the door to another opportunity to use my voice!
#NothingAboutUsWithoutUs #SupportNotStigma
May awareness events that might interest those in the nicotine space.
Month: Mental Health Awareness Month, ME/CFS & Long COVID Awareness Month, May Measure Month, Stroke Awareness Month, National Asthma and Allergy Awareness Month, National Cancer Research Month, Older Americans Month,
Week: May 11-17 (National Prevention Week)
Day: May 4 (National Self-Employed Day), May 24 (World Schizophrenia Awareness Day), May 30 (World Vape Day), May 31 (World No Tobacco Day)
There is a new flurry of tweets and news articles about vaping causing popcorn lung because of a TikTok video by a mom claiming her daughter came down with it after secretly vaping for three years. Raidió Teilifís Éireann (RTE), Ireland's National Public Service Media, tweeted about popcorn lung and put the information on their website. The tweet received a community note. RTE deleted their tweet and took down their webpage (WayBack Machine archive of the webpage.)
Pushing back against misinformation:
Four Pieces of Misinformation From a Popular X Thread about ZYN. “I recently read a thread on X that has been viewed by half a million people. It aims to expose ZYN’s hidden dangers, but it just muddles the waters thanks to half-truths, poor research, and faulty conclusions.”
New Nicotine Alliance condemns uncorrected false information about our organisation. “In late January, a research paper was published by authors from The Truth Initiative and the University of Chicago which contained wholly false allegations about the New Nicotine Alliance. We have contacted the publishing journal, Sage Journals, on several occasions yet these fictitious claims have still not been corrected. We are writing this article to put on public record that the claims by the study’s authors are fundamentally untrue, and that the process to correct them has been unduly slow.”
What is the best way to communicate with teenagers about challenging issues like vaping? “Though rarely if ever articulated explicitly, U.S. tobacco control groups take a decidedly different view of youth communication. Their model is based on the use of fear to deter usage, which in turn requires liberal use of misinformation to ensure that the risk in question is sufficiently serious to generate a fear response. That is how we get claims that vaping causes popcorn lung, EVALI, elevated Covid risk, and so on. And because parents are also an intended target of these messages, there is no way to keep them from adults who smoke and who could potentially save their lives by switching to vaping.
The “ends justify the means” is not a public health principle, but truthful communication is. When it comes to the laudable goal of communicating with youth and their parents to deter vaping initiation, we should always be mindful that truth is paramount and misinformation illegitimate.”
A full guide to vape aerosols. Post 5: metals. “This is the fifth Substack post of a series of posts describing vaping aerosols, their properties, their optimal regime of operation and comparisons with tobacco smoke and other aerosols. Understanding how vape aerosols form, operate and can be tested provides the knowledge to understand their pleasurable usage, their toxicity profile and relative safety with respect to tobacco smoke and other aerosols and pollutants.”
Arielle Selya (Thread on X about a JUUL study) Repeated point-prevalence of switching away from smoking after electronic nicotine delivery systems (ENDS) purchase.
Kristen Panthagani, MD, PhD “Why criticizing "anti-vaxxers" often backfires” (It’s not about the nicotine debate, but it fits it perfectly!)
Gal Cohen “New preprint out: "Vaping and Heart Failure: Did the News Get it Right?" … Critical omissions included that exclusive e-cigarette (EC) use was not associated with a significant increase in heart failure (HF), and the impact of combusted cigarette (CC) smoking in dual-users was discounted as having a minimal association with HF. These details were absent in the press release, as well as in almost all subsequent news reports. Notably, CBS repeated an unfounded assertion that actually originated in another news site ("Vaping once may increase risk of heart failure"), and Fox News acknowledged confirmation bias in their reporting ("Let's be honest - this is great news")…”
Jeffrey Weiss “…Indeed, I would argue that the sincerity question should be turned back on the proponents of the “core measures” theory. Are advocates who reject tobacco harm reduction, even when implemented by FDA pursuant to the 2009 Tobacco Control Act, serious about a smokefree future?”
Federal court blocks Iowa vaping regulations from taking effect. “A judge granted a preliminary injunction Friday. The Court ruled the law intrudes on the federal government’s authority to enforce the FDCA. Court documents show the judge said Iowa in part: “May not condition market access on compliance with federal authorization standards in a manner that effectively transfers the FDA’s enforcement discretion to state authorities.”
Vape Bans Averted in TN and ND—Just Not for Public Health Reasons. “In Tennessee and North Dakota, lawmakers who once seemed poised to impose strict PMTA registries changed course. The shift, it’s true, was driven largely by concerns about protecting domestic manufacturing and local businesses. Still, its real-world effect was to preserve access to harm reduction for hundreds of thousands of adults in those states who rely on vapes to stay off cigarettes.”
Expert Reaction to Stall in Vaping Rates. “Prof Caitlin Notley, Professor of Addiction Sciences, Norwich Medical School, UEA, said: “This study presents an exploratory analysis of data from the Smoking Toolkit Study, an ongoing monthly cross-sectional survey of a representative sample of adults (≥16 years) in Great Britain.”
Coalition confirms it would introduce vape tax and allow vapes to be sold at retail stores. “The Coalition has confirmed it would allow vapes to be sold at retail stores, tax the products and regulate the industry, in a departure from the current legislation which allows for vapes only to be sold at pharmacies.”
Nicotine Patch for Long COVID or Alzheimer’s? Why Nicotine? “The explanation for this treatment involves the cholinergic nervous system. According to the scientists, the SARS-CoV-2 virus binds to crucial nicotinic acetylcholine receptors in the nervous system. This can lead to impaired nerve transmission and symptoms such as brain fog, memory problems and fatigue.”
More U.S. mental health and drug centres have policies to stop vaping than smoking, new government report finds. “The data from the Centers for Disease Control and Prevention (CDC) shows that 57.9 per cent of mental health facilities have vape-free policies while 54.6 per cent have smoke-free policies
Meanwhile, 43.6 per cent of drug use centres have vape-free policies while 34.9 per cent have smoke-free policies.”
Family Tragedy Spurs One Man’s Drive to Cut Smoking in South Africa. “The death of my father the day before our planned wedding was the catalyst for me wanting to quit smoking. Unfortunately, it took 10 years, with multiple failed attempts, before I managed to do so—with a flavored nicotine vape. A chance meeting, now 11 years ago, helped me quit smoking for good within three days.”
After Mass Layoffs at the FDA's Center for Tobacco Products, What Happens Next? “Instead of correcting the mistakes made and fixing the PMTA process, Hicks said CTP has created a task force alongside the Department of Justice (DOJ), Drug Enforcement Administration (DEA), the Bureau of Alcohol, Tobacco, Firearms and Explosives (ATF), and other agencies to “waste user fees while attempting to put a band-aid on a situation they created in the first place.”
New Nicotine Alliance condemns uncorrected false information about our organisation. “In late January, a research paper was published by authors from The Truth Initiative and the University of Chicago which contained wholly false allegations about the New Nicotine Alliance. We have contacted the publishing journal, Sage Journals, on several occasions yet these fictitious claims have still not been corrected. We are writing this article to put on public record that the claims by the study’s authors are fundamentally untrue, and that the process to correct them has been unduly slow.”
As heated tobacco products reenter the US market, evidence on their safety remains sparse – new study. “There is limited long-term data about the health harms of heated tobacco products. My colleagues and I analyzed the available data, drawn from 40 clinical trials, that followed participants who used these products for a year or less. We looked at molecular changes in the blood, breath and urine, called biomarkers, to explore the potential risks of heated tobacco products.”
More news:
FCTC & CoP11
The WHO’s Failure to Protect Health: Insights from the TPA Webinar. “A recurring theme was the urgent need to include all stakeholders in tobacco control policymaking, especially consumers. The TPA’s “GoodCOP/BadCOP” initiative, set to continue at COP11 in Geneva from 17–22 November 2025, aims to provide a platform for real-time fact-checking and to ensure that those most affected by COP decisions are finally heard.”
Final thoughts…
Kind people.
Notes:
I create these newsletters as a personal project. They are not affiliated with any current or past employers or groups with which I volunteer. I receive no financial compensation for my efforts to create these newsletters.
My blog, Skip's Corner, has an X/Twitter account. My personal accounts are on BlueSky, LinkedIn, and X (Twitter).