ARVO 2019: Final impressions and conclusions
“From bench to bedside and back”…
That’s the slogan for ARVO 2019.
ARVO participants and attendees… if any of you ever see this… please consider sharing your “bench to bedside” stories with us patients!
Even though I go to quite a few medical conferences, ARVO is completely different. At ARVO I found myself overwhelmed with the sense of how much is going into research - eye research in general, and dry eye research in particular. Every time a presenter showed that last slide with the picture of their team and all the people who were part of their research, I just found myself once again in awe of how much is going into these efforts.
As consumers - patients - people, we really don’t have any idea at all of what it takes for new treatments - new drugs, in particular - to be developed. People with highly symptomatic dry eye disease only know that they are in pain and that nothing is helping enough. We have no way of knowing what it may have taken for a single therapeutic to come to market - the years of early research, the struggles for funding, the regulatory hurdles, the financing and marketing side. We only know our own stories. (If you’re interested, you can read about those at dryeyestories.com.) But learning the reality of what goes into dry eye research could make a huge difference to our community in terms of bringing us hope for better futures.
I want to ask YOU - you the researchers, you the clinicians, you the biotechs and pharmaceuticals and regulatory bodies - to tell us YOUR stories.
What have YOU put into dry eye solutions? What does your work mean to YOU? We would love to hear from you.
ARVO 2019 participants, if you’re interested in sharing your stories, please contact Aidan. We would love to be able to share these stories with patients.
Progress is all about the CONVERSATIONS.
Conversations… this word has been quietly reverberating in my head for months now. And at ARVO 2019, one of the strongest impressions I came away with is that everything of value that is happening, is happening as a result of conversations.
In that enormous convention center, everywhere you went, it was buzzing with conversations. All the seating areas - and I just love how well designed the Vancouver convention center was for this - were packed with people talking to each other about their research projects. The scientific posters - jammed with people having conversations with each other about their research. The presentations - all provoking more and more conversations. The side meetings and dinners and other events - it’s all about the conversations amongst people whose interests coincide, whose observations and opinions collide, whose ideas are constantly mutually impregnating each other.
In the dry eye world, conversation is constant, though so much more active and obvious and intense at ARVO. It was like watching the tribble effect right before your eyes.
These conversations about research, problem-solving and solution-seeking… these conversations are all amongst researchers and clinicians, and the industry and of course regulatory bodies.
What about US? How can we, the patients, become part of this conversation?
This is why I started The Dry Eye Foundation - after all these years of running the Dry Eye Zone, Dry Eye Shop, etc.
It’s because we patients need to have a different role in the world of answers and solutions than the relatively negligible role we have now as consumers of healthcare services and products.
Getting the Foundation off the ground has been a slower process than I expected when we first incorporated in late 2018. And not for technical reasons. We got our 501(c)(3) status in late February. I’m the bottleneck. We haven’t even finished recruiting our board of directors yet, and I’m the one that’s holding it up. Why? I found that I’ve had to take it slow. I’ve had to find pockets of time here and there to just ponder, to continue to let ideas percolate, and let the vision take clearer shape, lest I fall into the trap of rushing to do stuff just because stuff needs doing and there are ready hands or even ready money to do them.
Heaven knows there’s so much STUFF for a dry eye nonprofit to do! There are so many needs. There will always be more to do. Patient education, assistance funds, meetings, support groups, research projects, handbooks, and a ton of other things.
But I don’t want to just “do stuff”. I want the process of finding solutions to change.
And I am convinced the key lies in the conversations.
We patients are big data.
When, and how, and where will we patients find our collective voices?
Researchers are all about data, you know, and… we ARE data. We are BIG data. Our experiences, our symptom patterns, our treatment histories, our environments, our genetics. Not to mention our opinions about what matters in dry eye research. WE ought to be influencing dry eye research, from bench to bedside and back.
How will we, as a community, uncover and collect and analyze and understand and package and communicate the vital data and insights and opinions that WE can uniquely bring to the table in order for true solutions to emerge that will improve life for people with dry eye disease?
This is a core part of my vision for The Dry Eye Foundation. If you want to be involved, speak up.
Thank you, ARVO 2019!
For me, this year, this conference was exactly the right thing at the right time. From soaking in the big picture of it all, to learning from presentations and posters, from reconnecting with doctor friends I haven’t seen in a long time to meeting many wonderful doctors and researchers for the first time, it’s been a joy beginning to end for me personally. ARVO 2019 organizers, you are really something!
And thank you, sponsors!
Everyone who contributed to my GoFundMe travel fund for ARVO and ASCRS… I am more grateful than I can possibly express. I know crowdfunding has been around for a long time now, but personally, I’m new to it. I hope that the feeling you get when people you don’t even know want to support what you’re doing never grows stale.
After 15 years of pondering and researching and writing about dry eye mostly on my own time and dime, it’s a joy to have more ways to feel more connected to more people in the process. So again, thank you all!
By the way…
Vancouver is incredibly beautiful.
How did I not know this? I mean, I only live a few hours away.
But I’ve never spent any time in downtown Vancouver before, and I had no idea. It helps, of course, that we had stunningly beautiful weather the entire time, and that the convention center is designed to showcase the environment, to make you feel that you are outdoors. But everyone around me who had never been here was echoing the same feeling of amazement at the beautiful surroundings.