I’m back from the American Diabetes Association Scientific Meeting and I am pleased to report that the world hasn’t ended. Despite having in the same room, at the same time (and multiple times!), healthcare professionals, people with diabetes, industry and health organisations, the earth continues to rotate around the sun and we’ve not been plunged into the darkness of the apocalypse. I am relieved.
Actually, I’m totally not. Not at all.
There is much that we can be critical of when it comes to the U.S. health system. But their inclusion of consumers (patients, whatever you want to call us) at conferences is, from where I am sitting, enviable.
I cannot count the number of patient advocates in attendance at this year’s ADA conference. But we were everywhere. We presented, we attended sessions, we connected with each other, we tweeted the hell out of the talks we attended, we spoke with the aforementioned HCPs and people from industry and health organisations. We made plans for ways we could all collaborate and initiated projects that would cross seas and continents and provide support for other people with diabetes.
And the conference was all the better for it.
I return home to where there is, unfortunately, limited collaboration. When there is some sort of partnership or alliance, it is often tokenistic. Frequently, these are the words I hear when a collaboration is first suggested ‘We’ve been told that we should speak with people with diabetes about this project/resource/activity/ program. We’ve been working on it for months/years/decades now, so we think it’s time we brought in someone with diabetes to tell us what they think’.
Let’s be clear: that’s not a partnership. That’s a ‘Shit, we forgot to talk to the people this is meant for. Quick. Do it now. Then we can say we’ve consulted.’
Well, no. Not really.
At our annual scientific meeting here in Australia, you will not see a consumer contingent. There may be a few rogue people there who manage to get by all the rules and regulations because we work in the diabetes field. But by and large, we are a rare sighting. This is, of course, partly due to the Therapeutic Goods Act which prohibits direct marketing of prescription medications to consumers. We are not free to wander around expo halls with the name of drugs in our faces. It is not considered appropriate that people with diabetes attend the sessions aimed at HCPs for fear that we would misconstrue or misunderstand or misrepresent what we are hearing.
But never in my time of attending an event where consumers are welcome have I seen that.
I attended the ADA Meeting to hear about the latest in diabetes. I wanted to go to sessions and hear from speakers about breakthroughs and research and studies that aim to improve the lives of those of us with diabetes. And I did. I spent a lot of time in those sessions. I spoke with the presenters afterwards and felt welcome and included. I asked the speakers when they would be in Australia and made them promise to do consumer talks when they get here – not just talks for HCPs.
And I also spent time speaking with people from industry and hearing about in-development products. I heard about the processes in the US and in other places for subsidies and asked about how they have gone about improving access to their technologies. And I begged that when they say that they have a global team working on something that they remember Australia – reminding them that we may be a long way away, but we are still part of their market.
And I did all this alongside other advocates. It’s amazing how loud our voice becomes when we are together.
DISCLAIMER TIME: Whilst in Boston at the ADA Scientific Meeting, I attended sessions funded by: Medtronic Diabetes: Johnson and Johnson Diabetes and Dexcom. I did not receive any financial (or other) remuneration for attending these sessions.