‘Just remember you have every right to be here’

Author: Andrea Peet, Person with ALS, ALS/MND Patient Fellow

Before the Symposium and throughout it, I kept getting the same curious advice from basically everyone I knew who had attended the conference in years past: “Just remember that you have every right to be here.” While some put a more positive spin on it (“It’s so nice to actually see patients here this year”), I came away feeling like I was a high school student getting to sit in on a parent-teacher conference.

As in, ‘we are talking about your progress but not in a way you would understand. We’d prefer to let the experts talk and fill you in later on how things are going. But since you’re here, please refrain from asking silly questions or pushing back on how the classroom is being run.’

But here’s the thing: we students (patients) see things you don’t, and we most certainly talk amongst ourselves. We too want to succeed (aka live), so I’d argue that a few well-placed, “mature” students (patients) could make the job – keeping us alive better and longer – easier. At the very least, we might even teach you something.

Take Session 2B (Autonomy and Quality of Life) on having hard conversations with patients, like making the diagnosis of ALS, talking through difficult choices on breathing assistance, or end of life issues. I appreciated Dr. James Tulsky’s “evidence-based approach” with research demonstrating how critical it is for doctors to be able to communicate effectively with their patients. But how much more impactful would the session have been if a person with ALS had said clearly to the audience that yes, we want straight answers, compassionately delivered? I guarantee it would have driven Dr. Tulsky’s point home beyond the statistics. Maybe that memory – plus the data – would give neurologists more confidence to launch into those tough conversations, and we patients wouldn’t have to wait as long to be diagnosed. Or maybe their empathy would empower us to make decisions earlier, before they have to step in and force one when the situation has become desperate.

In that same session, Dorothée Lulé from Germany presented findings from her study, which concluded that locked-in patients actually feel like they have a decent quality of life. I think everyone in the packed ballroom was moved by Stephen Finger, Ph.D. (a fellow fellow) commenting after that many people with ALS in the US would like to continue living, but struggle with burdening family members to care for them or facing the enormous expense of paying for around the clock assistance (read more of his eloquent argument here). It’s an unbelievably valuable message that probably would not have been raised without patients at the Symposium.

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“Oh never-mind, he hadn’t brought out the wig yet 😂 NOW we’ve reached the new level.”

One final example: the Right to Try panel discussion. I spent much of that session wishing – wishing there was a patient advocate on the panel (I heard later that there was supposed to be one), wishing other ALS patients were in the audience to listen to the counterarguments, wishing that the Right to Try campaign had been more of a collaborative effort. What if – before all the online petitions, bills drafted, and congressional hearings – patients, doctors, researchers, and drug companies had all come together to discuss the limitations of the FDA’s Expanded Access Program, the doctors’ concerns, the risks to the clinical trial process, and incentives to draw industry in? How much stronger would the movement be if there was both demand AND supply?

But where could such a discussion start? Well, the ALS/MND Symposium…but only if patients were in attendance. Otherwise, it’s just experts talking to themselves.

I expect there’s a concern that encouraging people with ALS to attend the Symposium means watering down the material. My suggestion: don’t. There are several patient-centric conferences out there already, but what about patients who want to go deeper into the science? Or, say, run a nonprofit like mine that raises money exclusively for cutting-edge research? Just make it clear in the marketing (a couple of session titles would probably do it).

In his opening keynote address, Dr. Jeffrey Rosenfeld called for a dramatic paradigm shift in how researchers define and study ALS/MND. I would submit that it’s also time to change how the MNDA views patient participation in the Symposium – as partners, as resources, as experts of a different sort.

After all, we are the only ones in the world who think about this disease more than you do.

 

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