The Nicotine Stakeholder Revolution: Why Including Smokers in Policy Design Is More Than Just Good Democracy

The WHO FCTC Conference of the Parties convened in Panama in 2023 to make decisions that would affect the lives of the world's 1.1 billion smokers. The agenda included recommendations to restrict or ban e-cigarettes, heated tobacco products, and nicotine pouches. The evidence on these products was contested. The stakes—for the smokers who might use these products to quit, and for the youth who might initiate nicotine use through them—were enormous. **Not a single consumer of these products was permitted to testify. Not a single representative of the billion-plus nicotine users whose lives were at stake was allowed in the room.** The exclusion of nicotine users from the policy processes that govern their behavior is not an oversight. It is a structural feature of global tobacco control governance—and it is a feature that is increasingly difficult to defend.

**The exclusion is defended on several grounds—none of them adequate.** The 'addiction distorts judgment' argument: nicotine users cannot be trusted to participate in their own governance because their preferences are distorted by addiction. The argument is paternalistic in the extreme—it denies agency to a billion people on the grounds that their judgment is compromised, without acknowledging that the institutions making this claim have their own biases (funding dependencies, career incentives, ideological commitments) that are no less distorting. The 'industry proxy' argument: consumer advocacy organizations are funded by the nicotine industry and therefore cannot be trusted. The argument has some basis—some consumer groups do receive industry funding—but it treats all consumer voices as industry proxies, denying the legitimacy of genuinely independent consumer advocacy. **The exclusion of nicotine users from nicotine policy is a failure of democratic governance—and the policies that result from this exclusion are less effective, less equitable, and less legitimate than policies designed with consumer participation.**

**The models for consumer participation exist in other domains.** The HIV/AIDS movement transformed global health governance by demanding—and achieving—the participation of affected communities in research funding, treatment access, and policy decisions. The disability rights movement established the principle of 'nothing about us without us' as a fundamental norm of disability policy. The mental health consumer/survivor movement has achieved significant (though incomplete) participation in mental health policy. **Nicotine policy is decades behind these movements. The institutions that govern nicotine—the WHO FCTC, the FDA, national regulatory agencies—have no mechanism for meaningful consumer participation. The billion-plus people whose lives are at stake have no seat at the table.**

**The case for consumer participation is not just ethical—it's practical.** Consumers have expertise about their own experience that professionals do not possess. The smoker who has tried to quit ten times knows things about the barriers to cessation that no researcher can discover from a survey. The vaper who has stayed off cigarettes for five years knows things about what makes vaping an effective substitute that no product designer can learn from a focus group. **Policies designed with consumer input are more likely to address the real barriers to behavior change, to be accepted by the populations they target, and to achieve their intended effects. The exclusion of consumers is not just unjust. It's ineffective.**

**💬 Do you feel that nicotine users should have a voice in the policies that affect them?** What would meaningful consumer participation look like? And how can we overcome the institutional resistance to including the people whose lives are at stake?