Nicotine consumer advocates the world over are fighting for the right to health. Nobody is listening.
There are over 100 million users worldwide of safer nicotine products (SNP). Many will have struggled to find the right option for themselves, friends or family, or any option at all. Many will have obtained nicotine products illegally, smuggled into the country or bought under the counter. Few will know that there are activist groups all over the world campaigning for the right of these same people to have ready access to nicotine products which are affordable, appropriate and acceptable. The first study looking at the nature of these groups has just been published by Knowledge Action Change (KAC).
The aim of this study was to map the number and locations of nicotine consumer organizations globally and describe their history, legal status, membership, structure, objectives, working methods and activities, and funding.
A total of 52 active organizations were identified: 13 in Latin America, 8 in Africa, 24 in Europe, 5 in the Asia-Pacific region, and 2 in North America. Most were established from 2016 onward, and 39 were legally incorporated. Their reported objectives were to raise awareness about SNP, promote rights to access SNP, and advocate for a legal and regulatory environment in which SNPs are available. They are small organizations: Most are operated with volunteers, with only 7 having any contracted or paid staff, and only 13 persons globally with a paid position. A total of 31 organizations had not received any funding support. The total global funding for all organizations was US$ 309,810. None reported receiving funding from tobacco or pharmaceutical companies. All pointed to important achievements in the public debate about SNP and tobacco harm reduction.
They arose mainly in response to legal or regulatory threats to the availability and accessibility of safer products. In Europe, the main impetus came with the publication of the draft EU Tobacco Products Directive (TPD) in 2014. Across Europe, numerous e-cigarette users emailed their members of the European Parliament, explaining how in their view vaping had saved their lives by enabling them to stop smoking, and demanding that vaping remain a consumer product, rather than being banned or regulated as a medical product.
Objections to the EU TPD were also expressed through online forums and on social media. Initially, there were few formal organizations advocating for SNP. The Consumer Advocates for Smoke-free Alternatives Association (CASAA) in the USA, founded in 2009, was one of the earliest organizations to be created. Many small consumer organizations and associations began to emerge from around 2015 onward, based mainly in Europe and Australasia.
Apart from all the logistical and financial barriers to successful campaigning, these groups face even greater hurdles. They are in competition for a hearing in the public space with powerful agencies like the WHO and Bloomberg Philanthropies who put their considerable political and financial weight behind all opposition to tobacco harm reduction. Aided by the media and academic institutions who should know better, these agencies proffer the lie that all these consumer activist groups are simply in the pay of Big Tobacco, or at the very least engaging in a PR job to promote sales of industry products. This in turn means activists are excluded from opportunities to engage with politicians and put their point of view across. There is much hot air spoken by politicians, philanthropic organisations, government agencies and NGOs about listening to those with ‘lived experience’ across just about every type of human trauma imaginable. There are hundreds of testimonials out there from people who, as teenagers, used to be active sportspeople, whose smoking rendered them hardly able to walk upstairs, but who found a way back to health through SNP. Those who continue to press for heavy SNP regulations or bans need to look to their conscience and open their ears.