Change asthma: Do SOMETHING!
Sitting in a session at a healthcareconference on a Tuesday in November, my agitation regarding somewhat superficial patient inclusion began to build. And build. The conference was focused on patients and patient groups: a conference made for us, organized by three patient organizations, no less. And yet, discussion happened around us: an agenda comprised of public health organizations and government, pharmaceutical companies and insurance companies. As the sessions unfolded, I tried to keep an open mind about the lack of patients as presenters—yet my agitation rose about the conversation still going on around us, as industry left during the patient-centered breakouts for their own—with no idea what they were doing. How was this supposed to create a “conversation”? There was so much talk about “silos” needing to be broken down, yet simply, the prevalence of silos was simply reinforced under the guise of giving patient's freedom to talk about industry openly. We could not converse, could not collaborate because we were physically separated by the agenda.
I’d hoped for potential. Despite these things, I tried to stay open-minded. Then, my friend Bill, a fellow asthma patient, posed a question regarding an asthma drug that’s been long on the market and still doesn’t have a generic available, to a panel of individuals from pharmaceutical companies. And yet, while pharma tried to give a potential explanation, an organizer shut down a valid follow-up question and asked him to follow up directly, moving the mic along. At a patient event. I may have lost it on Twitter at this point, where an organizer tried to tell me otherwise, that conversation among patients and industry was NOT the point of the conference. (What?! Explain.)
Um, Nope. I am not accepting that. That is NOT okay.
We are silenced because of asthma
I had to do something more than just argue it out on Twitter and speak way too loudly on a break about the lack of true patient inclusion and collaboration. Just like when the only patient panelist on stage wasn’t addressed and #FreeBritt was born. Sometimes I feel like it’s just because it’s asthma that we are silenced. I have the greatest respect for other patient communities, but I also do not believe that if this question had been asked about a cancer drug, or about insulin, that the patient would have had the mic taken away from them and essentially been told deal with it themselves—they would perhaps have gotten a convoluted, non-answer, but, I understand the issue of time constraint, but the mic was passed to others—time was not a factor. The way this was handled was NOT okay. I was unsurprised, yet chose to be vocal: I became re-fuelled.
Change the Cycle of Patients NOT Being Part of the Process
There were a lot of healthcare events in Toronto in this span of weeks in November. I sent off a text to an asthma researcher who I collaborate with to see if she was in town—she wasn’t, so we instead scheduled a phone call for a couple days later. This is the researcher who recruited me to be part of a survey study team before the protocol was finished, who has not only knowledge of but has demonstrated skills in, true patient engagement and inclusion: she gets it, and she wants to change the cycle of patients NOT being part of the process.
I explained to her on the phone this morning what happened—I was again fired up, and she was equally dismayed yet also unsurprised with how things were from my descriptions of the event (and actually answered the question that Bill had asked of the panelists).
Just because this is not surprising, does not mean we should not be motivated to move. The event was about encouraging patients to action—although this isn’t how they intended, I am compelled to do something: having the conversation around patients or to patients is entirely different than having a conversation with them.
So, here I am: I am moving while I am still riled up—I have found the thing that is energizing me to create better, and I am going after it. I want this to be different. Just like if you’re eligible to vote and choose not to then you can’t complain, well, it’s the same in healthcare. If we don’t like what we see, we have to move—we have to do something. We’ve been patient for far too long. Asthma is one of the most common chronic diseases out there: let’s start acting like it, let them know that we are here, and we want to see change. Please, join me and do SOMETHING.
Do you get muscle cramps caused by your asthma medicine?