One of the real pleasures of working in the health sector has been learning from people outside the diabetes space. So much of my work is contained to the goings on in the World of Diabetes, but it is always fascinating to hear from people who are dealing with different health conditions. 

And so, it is no wonder that I was enthralled during an event I was involved in for APPA a few months ago. One of the things I really appreciated about this webinar was APPA bringing in discussions about person-centred care, person-centricity, and the role of lived experience in medical affairs. It’s a tricky area thanks to obstructive codes that often act as a barrier to real engagement and involvement from those of us with lived experience.  

I was thrilled to hear from Richard Vines, Founder and CEO of Rare Cancers Australia, especially his thoughts about the role of people with lived experience of rare cancers in his organisation’s advocacy efforts. 

Richard spoke about how active and involved families of people with lived experience of rare cancers are in their advocacy efforts. He told a lovely tale of the myriad notes and small gifts in the (now previous) health minister’s office that had been sent to him from families who he’d met through the organisation’s lobbying and advocacy campaigns, thanking him for increasing funding and helping raise awareness of rare cancers and the challenges faced by people diagnosed with one. Richard shared that involving and including those people in all their activities was key to his charity’s success. It didn’t surprise me one bit that his attitudes closely mirrored the ‘Nothing About Us Without Us’ calls that form part of my daily advocacy. 

The APPA event was back in March, and it coincided with the handing down of the Australian Federal Budget. I, along with many other people with diabetes, were devastated to learn that there was no funding allocated to broadening access to the NDSS CGM initiative. That, of course, came a month later as an election promise, but at the time, we didn’t know that. 

Before that bipartisan election promise, many people with diabetes had dual frustrations of being blocked from affordable access while at the same time knowing that there have been Living Evidence Guidelines for type 1 diabetes technology for over a year now that clearly state that CGM is recommended for all adults with T1D (over BGL monitoring). 

It makes no sense that professional and lived experience bodies have taken the latest and best evidence to provide guidelines for the best use of technology in the management of type 1 diabetes only to have limited funding to make it a reality. But I wondered just how many people the health minister had heard from – really heard from – to understand that. I wonder if he has letters of thanks from people with diabetes in his office.

The message that came home loud and strong from Richard Vines was that advocacy success is more likely when there is strong representation from those with lived experience to round out the story provided by evidence and guidelines. Hearts and minds. Minds and hearts. 

We need more ‘hearts stuff’ from those that generally use evidence to support their case, and more ‘mind stuff’ from those who generally use lived experience to support theirs. And the lived experience must come – it can only come – from those with real skin in the game, not those adjunct to it, or claiming to speak for it. 

Disclosure

I was invited to be a panellist for this Australian Pharmaceutical Professionals Association webinar and volunteered my time.