Excluded Tobacco Harm Reduction Consumer Groups Fight On

November 15, 2023

“So little is published about the grassroots groups which advocate for tobacco harm reduction, but as our briefing paper shows, there is much to be said,” Jessica Harding, director of external engagement at the public health group Knowledge-Action-Change, told Filter.

KAC, based in the United Kingdom, has just released the latest report under its Global State of Tobacco Harm Reduction (GSTHR) project. It explores both the critical importance of international consumer advocacy groups in this space, and their exclusion from policy discussions to determine the future of tobacco harm reduction (THR).

Relatively little is known about the true extent of THR consumer advocacy, when many groups are “loosely organized” and informal, acknowledges the report. Many have only emerged recently, given the relative youth of THR options like vapes and heated tobacco products. Yet past research has identified 54 such groups—present in Western Europe, Latin America, Africa, North America and the Asia-Pacific region, but with none identified in Eastern Europe, Central Asia or the Middle East.

“Many of these groups were affiliated with four regional umbrella organizations covering Latin America (ARDT Iberoamerica), Africa (CASA), Europe (ETHRA), and Asia-Pacific (CAPHRA),” the report notes.

Formed by people who have themselves switched from cigarettes to safer alternatives, consumer groups have “key insights into how the smoking problem might be fixed, rooted in their own experiences,” states the report. “They know what consumers need, they know how the products work, and they know how consumers use the products.

“Their experiences are testament to the potential of harm reduction, and they should be heard.”

With an estimated 1.1 billion people currently smoking worldwide—and an estimated 8 million annual smoking-related deaths—you’d think the expertise and experience of people who’ve found different ways to quit would be considered invaluable by politicians and regulators.

“The views and needs of people who use safer nicotine products should be central to discussions at national or international level about the products’ future availability and regulation,” the report continues.

But that’s not so. The report goes on to address the exclusion of consumers from key discussions. For example, groups of people with lived experience of THR will be completely absent from the 10th conference of the Parties (COP10) to the World Health Organization’s Framework Convention on Tobacco Control (FCTC).

COP10 was due to be held in Panama this month, but was recently postponed to an unspecified date in 2024 “due to the current security situation in Panama.”

When it eventually happens, this conference, which will shape international nicotine policy, will “lack any insight” from the world’s estimated 112 million people who use safer nicotine products, states the report.

With those millions of voices effectively muzzled on issues that directly affect them, advocates have warned that the WHO, which broadly opposes THR, is “railroading delegates toward a preordained outcome of heavy restrictions and prohibition” for products that save lives.

“People who use safer nicotine products and people who smoke are significantly affected by policy responses to tobacco and nicotine,” said Professor Gerry Stimson, KAC’s cofounder, in a press release. “They are also the people who would most benefit from tobacco harm reduction. As in other comparable areas of public health, there must be a recognition of the contribution consumer advocacy groups can make to inform decision-making at meetings such as COP10. Their experiences are testament to the potential of harm reduction, and they should be heard.”

Many obstacles stand in the way. People who use nicotine are stigmatized, and consumer groups often face “negative attitudes” from doctors, media and other prohibitionists, notes the report. And they conduct their work of educating fellow consumers and policymakers with almost no funding, run almost entirely by volunteers—a reality illustrated by both the new report and past GSTHR work.

In this respect, the contrast with groups that campaign against tobacco harm reduction is stark.

The total past-year funding received by all 52 consumer groups surveyed by GSTHR in 2022 was US$ 309,810. Ten received donations and nine received membership fees. Three of the groups received donations from vape companies; none received any from tobacco or pharma companies.

In 2019, meanwhile, the Campaign for Tobacco-Free Kids received $160 million from Bloomberg Philanthropies to campaign worldwide against vape flavors—really important to people who switch from cigarettes—over a three-year period.

“To my mind, they are true public health heroes.”

“The funding discrepancy between the anti-tobacco harm reduction lobby and these groups is vast, yet consumer advocates are very successful at ensuring the voices of those most affected can be heard,” said Harding, who herself quit smoking with vapes, and previously worked with a UK consumer group, the New Nicotine Alliance. “To my mind, they are true public health heroes.”

Underfunded and under-resourced, these grassroots organizations have still managed to spread their message, the report describes. They’ve engaged with media, hosted webinars, organized social media campaigns and created dialogue with government bodies. “Most recently, in both New Zealand and the Philippines, consumers have played an important role in ensuring regulated access to vaping products through a consultative process.”

The paper also details the work of consumer advocates in Mexico and India, where governments have imposed different THR prohibitions.

The report, which is available in 13 languages, further discusses the history, development and roles of THR consumer advocacy groups, as well as their overarching goals.

“Consumer advocates in tobacco harm reduction want to ensure that safer nicotine products are available as an alternative for all people who smoke, wherever they live in the world,” it states. “Consumers of safer nicotine products have the right to health and the right to tobacco harm reduction.”

But while the principle of “nothing about us without us” has become established in other areas of advocacy, THR consumer advocates are too often left on the outside, looking in.

“In other comparable areas of public health, there is a recognition of the importance of lived experience in decision-making,” the report concludes. “Consumers of safer nicotine products should similarly be recognized by governments around the world as important voices in collective efforts to bring an end to the smoking epidemic.”



Image of vaping activists protesting in Ontario in 2016 by VaporsConer National via YouTube

The Influence Foundation, which operates Filter, has received both restricted grants and donations from KAC. Both KAC and The Influence Foundation have received grants from the Foundation for a Smoke-Free World. Filter‘s Editorial Independence Policy applies.

Kiran Sidhu

Kiran is a tobacco harm reduction fellow for Filter. She is a writer and journalist who has written for publications including the Guardian, the Telegraph, I Paper and the Times, among many others. Her book, I Can Hear the Cuckoo, was published by Gaia in 2023. She lives in Wales. Kiran's fellowship is supported by an independently administered tobacco harm reduction scholarship from Knowledge-Action-Change—an organization that has separately provided restricted grants and donations to Filter.

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