For the past five years, I have been fortunate to serve as a moderator for panels during the annual BIO International Convention and Conference. Getting a panel accepted is quite an accomplishment, as hundreds of proposals are submitted and graded during the annual call for sessions. And while I have written about BIO’s educational planning process, along with what makes for a good session proposal, I haven’t written about serving on a panel at BIO. In a previous blog, we published thoughts from this year’s convention from a seasoned tradeshow conference attendee, though a first-time attendee of BIO (read Misty-Eyed, Mystified, And Mind-Boggled At BIO 2019 by Matt Pillar within this recap). In that same spirit, we thought you might enjoy the perspective of a first-time BIO educational session panelist. But this is not an industry executive, but a patient with a rather unique perspective. His name is Chris Anselmo.
I first became acquainted with Anselmo when lining up folks as contributors to Life Science Leader’s Patient Perspective column. Though we provided a submission guide to get started, we opted to have a call to make sure we were aligned on a topic most likely to provide actionable information to our biopharmaceutical executive-level readers. We landed on the importance of Empowering Patients At The Time Of Diagnosis, published in our June 2018 issue. But during our telephone conversation, Anselmo expressed interest in biopharmaceutical industry public-speaking opportunities. Diagnosed with limb-girdle muscular dystrophy type 2B (LGMD2B) at the age of 18, Anselmo has found writing and speaking to be productive outlets to educate audiences on the patient experience. Here are his thoughts as a first-time panelist at BIO 2019.
Patient Perspective from a First-Time BIO Presenter
By Chris Anselmo
June 2019 was the first time I attended the BIO International Convention, which is another way of saying that it was the first time I’ve ever attended a conference that literally spanned city blocks.
In my job , I work on the Healthcare Partnerships team at the Muscular Dystrophy Association (MDA), and have built several close relationships with biotech and pharma companies working on neuromuscular disease. Thus, attending BIO served a work purpose, as I planned to meet with several contacts working on rare diseases. And while that alone made it worthwhile to attend, my main reason for going this year was to participate on a panel as part of the Patient Advocacy track. Because, in addition to working at the MDA, I also am a patient. Having dealt with symptoms of (LGMD2B)/Miyoshi Myopathy for 12 of my 32 years, I have built up a wealth of experience and understanding, not just as a patient, but as someone who regularly interfaces with drug development companies. The session, “Understanding the Voices of Patients: Unique Perspectives on Healthcare,” was an opportunity to share my patient journey and provide insight into not only what’s important to patients, but it enabled me to share ideas on how patients can work together with other healthcare stakeholders to spur innovation.
Looking at the agenda, it is clear that BIO is primarily an industry conference. My goal in attending was to help ensure that the patient voice and perspective was well represented. Personally, I find it gratifying that patients are being incorporated into industry events like BIO. Because as key stakeholders in any drug development discussion, we patients are the end users.
Before my arrival, I strategized on what sessions to attend, doing my best to memorize the layout of the exhibit hall so as not to get lost. Monday was a day to become acclimated with BIO, and I attended a couple sessions and scoped out the convention center to get a feel for where everything was located. But Tuesday was the big day, as this was when I was to be on stage. Not being a morning person, I was thankful the organizers scheduled the panel for 11AM. As it takes a while for coffee to kick in, I was glad session attendees saw and heard my more sociable and fully caffeinated self.
Arriving early, I could feel my nervousness increase as I could see the room filling up for what I anticipated being a substantive discussion. But I was grateful to share the stage with two accomplished and inspiring panelists — Eve Bukowski, VP , patient advocacy, education & outreach at California Life Sciences Association (CLSA) who has lived with Stage 4 cancer for over a decade; and Emily Kramer-Golinkoff, co-founder of Emily’s Entourage, a patient advocacy organization working to accelerate R&D for the “nonsense mutations” of Cystic Fibrosis (i.e., her disease). The moderator also was impressive — Julie Gerberding, M.D., EVP and chief patient officer at Merck, and former director of the CDC.
I am always a little nervous about Q&As because though I have shared my patient story hundreds of times, I am not often the best at thinking on my feet. But I soon realized that it was a sympathetic, supportive audience, and there was really nothing to be nervous about.
From my perspective, the session was a home run, as panel members stressed the importance of incorporating patients and their voices into all of what biopharma does; from understanding what diseases to investigate to designing clinical trials and biomarkers. Incorporating the patient voice is not only the ethical thing to do, but it makes good business sense as well. After all, patients are the experts on these different conditions, as we live with the symptoms and effects every moment of every day.
In this day and age, patients and industry are often perceived as having an adversarial relationship (and in many instances rightfully so), but it doesn’t have to be this way. We are all in it together, trying to reduce suffering and prolong lives; we just come at the same problem from different perspectives. I believe there are win-win solutions to be had that benefit both patients and companies. I feel confident that this message was not only delivered during our panel but heard by those in attendance.
Throughout the rest of the conference, I met many wonderful advocates, patients, and members of industry. And while I valued the opportunity to meet people from all over the world working in numerous biopharma related industries, I marveled at how we are all singularly focused on improving human health. I look forward to attending BIO in the future — and continuing to share my patient perspective.