“Nothing about us without us” refers to a philosophy whereby policymakers and governments should listen to the ideas and opinions of the people who would be affected by any policy. Harm reduction advocates face constant pressure and constant backlash from the government.

In much of the world, the voices of people are heard by governments when policies and laws are developed that would affect people who have disabilities or those involved in harm reduction in various other areas.

Why are many of these same governments not interested when it comes to tobacco harm reduction? The voices of those people who smoke cigarettes or used to smoke cigarettes and then switched to harm reduced products are often completely ignored or, at best, paid lip service to.

Here in Aotearoa/New Zealand, after procrastinating for several years, the Government passed, under some urgency, legislation to regulate vaping. They deployed a truncated process during a nationwide lockdown. Yes, we were provided with the opportunity to make written and Zoom submissions to the Health Select Committee (which some people did) but the voices of the vapers were ignored and the Government barrelled on through with an uninformed paternalism.

After the drafted legislation was published AVCA (New Zealand’s vapers’ advocacy group) submitted a formal petition to the Government asking that Parliament debate part of the proposed legislation to limit general retailers (as opposed to specialist vape shops) to the sale of only three flavours of e-liquid (tobacco, mint, and menthol). The petition closed with over 17,000 signatures, which is a very good response for a country with 5 million residents. AVCA recently heard back from the Health Select Committee (long after the legislation had passed). Their response was that the issue had been debated enough and no further discussion was required. Again we were ignored.

Over the past 18 months there have been attempts to silence AVCA (we are a ‘grass roots’ organisation of ex-smokers who switched to safer alternatives to cigarettes). One New Zealand university locked us out of their webinars citing article 5.3 of the Framework Convention on Tobacco Control. The premise of article 5.3 was initially to protect governments from tobacco industry influence and not let the industry influence policy. AVCA runs on a ‘shoe-string’ and certainly receives no tobacco industry funding. Personally, I believe this was an excuse to keep us out due, at least partly, to our past call outs of questionable ‘science’. I guess its more comfortable to sit in your safe echo chamber and all agree with each other.

If you have read this far, you may be thinking what is the point of continuing advocacy for tobacco harm reduction? One thing I do know is that if you do not fight it is certain that you will lose. There are a number of easy things that tobacco harm reduction advocates can do (no matter where you live).

• Join your local advocacy group. They will be able to point you in the right direction where your efforts are most effective.
• If there is a petition going around and you are eligible to sign it please do so, there is one linked at the bottom of this blog. It only takes a couple of clicks.
• If your local advocacy group is asking for submissions to your government or any other organisation. Please make one. Don’t worry about how good you think it might be. Don’t worry if you think you might make spelling or grammatical errors. If the format of the submission contains questions that you don’t understand ask your advocacy group, sometimes these things are designed to get feedback from everyone involved and the questions may not be applicable to you, it’s fine to state N/A or leave it blank.
• The most compelling thing you have is your own story. If you are making a submission to your government, tell your story. If you spot a negative on-line article in the media and comments are turned on you can tell your story. Lived experience is really valuable. If your comment is attacked by on-line trolls ignore them.

The most important thing we can all do is persevere. At some point science will prevail over ideology, but we can help it get there sooner by being more vocal and being louder. There should be nothing about us without us.