YDKN and Expertise

The Value of Lived Experience

The Documentary You Don’t Know Nicotine…

…is now available on Prime Video and Apple TV.

Somewhere in the iconic logo for You Don’t Know Nicotine (YDKN) is my picture. I am one of the 100s of faces used as pixels to create the eye and skin around it. Each of us has a story connected to nicotine that we can tell.

I’m not even going to pretend to be unbiased about this. I have watched this movie several times. I guarantee that I hold the world record for the number of times it has been watched.

I first “met” Aaron Biebert on Facebook. The first thing that struck me was how much he cares about people. ALL people. I don’t think he knows how to be anything but kind. He loves to hear people’s stories and believes everyone should have an opportunity to be heard.

Shortly after getting to know him, his team began filming A Billion Lives (ABL). We talked often while it was being filmed, edited, and premiered around the world. I was at the United States premiere in Milwaukee, WI. I’ll never forget Aaron talking on stage before the movie started when he encouraged everyone to “be a good neighbor” to others.

After a couple of years, it became evident that more information, put together in a better way, was needed. Aaron and his team decided to make another film. I was honored to provide my support and expertise, drawing on my lived experience, to Aaron and his team.

The team was excited to showcase YDKN at film festivals and premieres, just as they had done for ABL. Unfortunately, COVID hit, and the world ground to a halt as everyone hunkered down and isolated. A wealth of knowledge and perspectives sat there, waiting, while millions of people continued to die from smoking.

Aaron was devastated.

Not one to give up, they invested in a giant, inflatable movie screen in hopes of doing outdoor viewings of the film. It was a special day when they came up here and did a practice run of setting up the screen and showing the movie. We were among the first to see it!

It broke my heart to know the film was not going to be shown the way a film should be - premieres with red carpets, press, and dignitaries. I just had to give Aaron and the team the red carpet experience somehow!

The screen was set up in the parking lot of the race track a mile from my home. While the red carpet was small, the signage was just props for pictures and parties, and the snack bar was all individually packaged due to COVID, we still managed to pull off a backwoods version of a red carpet premiere.

I had hoped to spend some time with Aaron while everyone was setting up, but he disappeared into the motorhome they were using. A couple of weeks later, I learned that he had done that because he was so moved that he went and hid his tears, staying in there until he could regain control of his emotions.

We spent a wonderful evening with Aaron, his family, and the crew, eating dinner and talking while we waited for it to be dark enough to watch the film. It was worth the wait!

A few weeks later, there was the official outdoor premiere in Milwaukee, and, as you can imagine, I was there, along with many other advocates. We all had a great time, and it was heartwarming to hear the cheers after the film!

It was after this that I got a phone call from Aaron. I seemed “different” to him the times I saw the movie, and he wanted to know if I was OK. I tried to shrug it off and told him I was fine. He persisted and asked, “are you sure?” Those three words changed my life. I realized I wasn’t ok. I wanted to die.

Thanks to his reaching out, I went and got help. That is when I got diagnosed with Major Depressive Disorder and an Anxiety Disorder. A couple of months later would lead to the rest of the list: PTSD, Autism, ADHD, and Rejection Sensitive Dysphoria (RSD). The diagnoses started rolling in around the time my friend, Jason, died from suicide. The rudest wake-up call I’ve ever been given. It was time to pay attention to my mental health.

Over the past five years, a few people have been there for me when I needed someone the most, when their caring is what kept me alive. Aaron was the first to fill that role, the first person to tell me to stop listening to the thoughts that convinced me I was worthless and to listen to the people who said I had value and something to offer the world.

Back to the movie…

As we all know, money doesn’t grow on trees. The cost of traveling to show the film at outdoor venues became too high. The COVID pandemic dragged on for far too long, accompanied by numerous restrictions that limited where it could be shown.

The next most logical option was to find a major streaming app willing to pick up the film. It turns out that venues like Netflix aren’t interested in an educational documentary that isn’t hyped up with a bunch of conspiracy theories. And so, the team launched their own streaming service. It so deserved a larger audience!

I am thrilled to see that streaming services are starting to pick up the film. I hope more services adopt it, so it is accessible to more people.

While ABL talked about smoking and vaping, YDKN focuses on nicotine. What is it, where does it come from, how is it used, and why? What are the concerns about using nicotine? Are there any benefits? Who uses nicotine?

I am impressed with the diverse range of perspectives in the film, from children to the elderly. From Glantz to Benowitz. From those who think it should be banned to those who believe it should be embraced. The shock of a parent putting a nicotine patch on their non-smoking child, to a leader in tobacco control who changed his mind. It’s all in there! So many stories!!!

I was asked to be one of the people interviewed for the movie. I quickly declined. The smaller reason was my fear of public speaking. The biggest reason was that I didn’t think my voice mattered. In my eyes, there were more essential voices that should be heard. I’m just the lippy old lady in the Great North Woods.

When the YDKN team gave a private premiere of the movie in my community, I broke out in tears when, after the credits, there was an “in memory” section. I saw the name “Margaret Place” on that list. That is my mom. Aaron told me her story was part of the inspiration for the film.

After that, there is a “thank you” section, and among the list of names is my name! Whoa! I never imagined I had done enough to deserve that kind of recognition. I promised Aaron that night to never say “no” again to an opportunity to use my voice. He proved to me that all of our voices matter.

Since then, as a person with lived experience, I try to use my voice in any way I can to help save the lives of people who smoke. Even though public speaking is a major trigger for my anxiety disorder, if asked to speak, I accept the offer if I can get time off from my job (even if I’m out of vacation time). I try to self-fund these trips whenever possible. A couple of times, the only way I could afford the travel was to accept help from the conference organizers with travel expenses. MOST of the time, I have managed to self-fund.

I believe that people who use(d) nicotine need more representation at conferences. While many of us aren’t academics, policymakers, regulators, or paid staff of an NGO, we are experts in our own right. However, we don’t have an employer to cover the costs of our trips or registration fees for these events. We have to take time off work and either use our vacation time or go without a paycheck for a few days.

I find this statement interesting: “This BMJ Collection was proposed by the World Health Organization's [WHO] Global Coordination Mechanism on the Prevention and Control of Noncommunicable Diseases [NCD], which funded the Collection, including open access fees and paying the lead authors with lived experience for their expertise…” [emphasis added]

Why do I find that interesting? Well, thank you for asking. The first thought that knocked me up the side of the head was the fact that one of the major contributors to NCDs is smoking tobacco. None of the pieces are about smoking and include the voices of people who use nicotine.

The second thought that stuck in my head was that people with lived experience are considered experts in this collection, and their expertise is valued enough that it was prudent for them not to have to make financial sacrifices to use their voices.

This is not always true for people who use nicotine. People like me. When I accept help to attend events to use my voice, I risk having my voice discredited with fingers pointing at me, saying I have a conflict of interest and am nothing but a Big Tobacco shill.

How is this right or fair? How did we end up with nicotine so demonized that the people who use it are nothing more than low-life scum who should be forced not to use it by the likes of the WHO? Why do the voices of other types of lived experience matter, but the voices of those who use nicotine don’t?

If Aaron and his team can give all voices a seat at the table, why can’t the WHO, public health groups, policymakers/regulators, researchers, the press, and people involved with tobacco control?

Watch the movie. Encourage the people you know to watch it as well. Ask them to leave a review for it. Ask them to talk about it on social media.

Maybe it will help ignite conversations and save lives. Maybe, someday, the lived experience of people who use nicotine will matter, too.

Each of us brings our own “lived experience” to the table, and I think it’s essential to think about that. Most of the time, my version of “lived experience” focuses on those of us who use or have used nicotine. And most of the time, that vision starts with someone who initiated their use by smoking tobacco. These are the voices I feel are the most widely ignored and need to be included.

Yet, nootropics are a big deal to some folks, and there are people using nicotine patches, gum, and pouches because they feel it helps them focus and improves cognition. They have their own kind of “lived experience.” When it comes to regulating these products, do their voices matter?

If you’ve watched a loved one who smoked die slowly from lung cancer, struggling for every breath, do you not also have a “lived experience” that deserves a seat at the table?

Parents are worried about their kids. Parenting is its own unique form of “lived experience,” and their kids also have their own “lived experience.” Why do some people think their voices aren’t important?

I must also acknowledge that those who earn an income in this space also have “lived experience.” Some of them can already claim one of the examples above. Others have dedicated their lives to improving public health or to transitioning an industry away from lethal combustible products.

I think it is vitally important that we do a better job of including the voices of people who use(d) nicotine. I also think that while we include them, we make an effort to include all voices in a balanced and safe way for everyone to put their heads together to end death by smoking. We’d accomplish so much more if we’d stop dismissing each other.

Behavioural Research that listens: Let’s have a proper chat, shall we? “Behavioural research has become central to tackling some of society’s most pressing issues—from climate change and health inequalities to community resilience and economic development. As these challenges grow in scale and complexity, the need for behavioural research to be relevant, ethical, and impactful has never been greater. However, this requires more than sophisticated models or data—it demands meaningful public engagement and stakeholder involvement (PESI) to ground research in the lived realities and priorities of diverse communities.”

Time to see lived experience as expertise, and make inclusive engagement business as usual. “Radical change is needed for disparate and ad hoc initiatives to become “business as usual” at every level of healthcare, policy, and research decision making, and for patients, care givers, and relatives to be valued equally to other experts. To this end, the World Health Organization (WHO) created a practical guide to including lived experience in healthcare: the 2023 framework for meaningful engagement of people living with non-communicable diseases (NCDs), mental health and neurological conditions. This is one of four WHO reports co-created with people with lived experience setting the expectation that nothing about people with a health condition should be decided without their involvement.”

Lived experience as expertise. Video and links to papers on this theme.

“They Just Dropped Me”—When Drug-Related Stigma Replaces Pain Care. “Every patient deserves to be heard, treated with dignity and offered real options. Phillip’s story didn’t have to be this hard. No one else’s should be either.”

Lisa Gable - “…Jim has quietly supported my choice to speak and write, in hopes that our experience might help others. He’s spent decades listening, advising, and connecting with those navigating similar challenges.
We’ve seen how sharing your story can shape research, treatment, and understanding. But when illness becomes your identity—your mission, your platform—it can slowly take over.
Advocacy rooted in pain can become frustration.
It can hold you back….”

Centering the patient: How patient lived experience can and should shape obesity thinking. “Considering recent publications, clinical experience, and testimonials from people with obesity, here we discuss the stigma faced at the individual, public, and institutional levels for people with obesity, how perspectives of the disease differ between patient and physicians across all levels of stigma in recent literature and identify where further knowledge and clinical application is needed to drive change for the treatment of this ever-evolving disease. The future of obesity management needs to prioritize a holistic, patient-centered approach and the first step to achieve this is to understand the disease through the lens of those living with obesity.”

Sherry Gossett, June 30, 1955 — July 1, 2025. “When Sherry was diagnosed with COPD brought on by smoking combustible tobacco, she asked me to stop smoking so I would have the chance to not develop this terrible illness….She wanted to help as many people as possible, to stop smoking…Sherry was a rock, dedicated to helping people stop smoking and worked right alongside me the whole way, even in the shop converting smokers until she could no longer, because of her illness. Sherry was a strong advocate for the rights of adults to have access to less harmful nicotine products. So much so that even though she was wheelchair bound and on oxygen, she would not miss any opportunity to go to Washington DC to speak to our representatives…” [RIP, Sherry. Our hearts are breaking for Bucky and your family. We will miss you and will carry the torch you so bravely carried. ~Skip]

LOOK AT THE FACES OF THOSE WHO STILL BREATHE. “And so, the young man who had once set out to understand how people who used heroin behaved would come to embody a new ethic —one in which saving a life mattered more than punishing a behavior…’People are at the core of harm reduction,’ he says, ‘it’s people who are leading a silent revolution in the way nicotine is consumed. This is public health leadership by the true experts, people who are affected by smoking, rather than by so-called Public Health experts.’” [This is a beautifully written essay about Gerry Stimson’s career. It is lengthy and well worth the time to read. ~Skip]

Who’s Missing From the Tobacco Harm Reduction Conversation? “…This knowledge gap is especially damaging for marginalized populations with the highest smoking rates, including people experiencing homelessness or incarceration, people who use banned drugs and people with mental health conditions, among others. At a conference that amplifies consumer voices, it was fitting that “Who else should be in the room” featured speakers dedicated to working with a number of those populations.”

Until next time…

Notes:

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