For the first time in my career, I have purposefully withdrawn myself as an invited speaker for a major health conference where I was billed as a patient advocate leader.
Part principle. Part protest.
After committing significant time and resources over the past several months to promote this event and their team, they only just recently dropped the bomb that, not only are there no speaker honorariums, they don’t even pick up the tab for travel expenses. (In hindsight, it would have been nice to know this upfront when they first solicited me to participate.)
Truth be told, I genuinely believed this particular company thought differently.
There was a different energy. A different culture. A different appreciation for the value that the patient voice brought to their narrative. They came across as being differentiated from the pack and seemed to understand how mismanaging patient tokenism could be detrimental to their reputation and credibility.
For sure, they did not want to come off as just another version of those “pay to play” health conference organizers. This I can attest.
Then → “We don’t pay our speakers or cover their travel.”
Now, at face value, I do totally get that.
But with an asterisk.
If the invited speaker is employed by IBM, Amazon, CVS, Google, Novartis, Lyft, Facebook, or Fortune 5000 Company X (which nearly all the are), their employer covers these costs. That lucky speaker gets an all-expenses-paid “workcation” to Vegas for a 45-minute gig. Who wouldn’t want that?
But patient advocates pay out of pocket.
This the flagship SOP model upon which these businesses rely.
With minimal exception, private-sector event companies like these simply expect patient advocates to share their experience, insight, wisdom, and influence for free.
This continues to piss me off because patients didn’t ask to have their experience, insight, wisdom, and influence in the first place. Patients don’t ask to get sick just so they can gain experience, insight, wisdom, and influence they didn’t want or need.
“I can’t wait to be diagnosed with endometriosis so I can learn how to live with a debilitating chronic illness,” said no one ever.
Patient experience is privileged information that comes at a high cost. It is quite apparently a highly-sought-after commodity within the private sector. And, from my vantage, any commodity that is so highly sought-after should have a monetary value assigned to it.
Perhaps we need a “Suffering Index Exchange” to quantify that dollar figure.
If the private-sector sees value in my “experience, insight, wisdom, and influence” they must pay for it. Period. End of subject.
And not just airfare and hotel.
This exploitation will continue indefinitely until the patient community rises and takes a unified stand. Until that time, patients have no assigned value and no perceived dignity.
We are tokens for the plucking — berries on the vine.
I say no more shallow exploitation.
I say no more tokenism.
I say no more free public optics sown to profit margins.
And so, pulled right out of my ass, I am inventing P.A.Y.U.S., the “Pay All Your Underserved Patients” mandate.
Who will join my made-up thing?
HEY PATIENTS → Will you flatly decline any future invitation to speak at a private-sector health conference if they do not adequately compensate you for your time and talent? Remember, your experience, insight, wisdom, and influence are worth money, and you deserve the dignity of compensation.
In conclusion, I ask all of you — my fellow patients, advocates, activists, and leaders — to share your stories of exploitation with me, as well as any future invitations to speak at events where there are no honorariums and/or no travel reimbursement.
I will continue to embargo and call out these events for their blatant hypocrisy. The very least they could do is adoption of the “Patients Included.” charter. And even that charter does not explicitly demand the dignity of compensation.
Change may come slowly, and progress may not be the straight line we’d like it to be, but, today, I am genuinely disappointed.
And we’re done.
I’ll see myself out.