On Ten Years, in 2020
In the midst of everything that was 2020, we missed the fact that The Great Bowel Movement turned 10 years old. Ten. A whole decade. We’ve grown up, we’ve watched the community evolve, and we’ve been witness to a changing IBD conversation across the emergence and growth of various platforms. We’ve taken a moment to reflect on what’s changed, what’s stayed the same, and everything that is the anomaly of life in 2020.
This is a long (but important, we think) one, so here’s what we’re talking about:
Our origin story revolves around our time at the Crohn’s and Colitis Foundation’s Camp Oasis, and the value of a space, and community which is safe for any and all conversations about IBD. What was incredibly striking was the openness with which young kids discussed their diseases, treatments, and experiences. It’s been an honor to see these happen, but not just happen – they are organic, they are vulnerable, and they create change in the lives of young patients not only looking for guidance, but looking to find their place in a community, and world, of chronic illness.
From there, the rest is our 10-year history. We created our ‘Ask Me’ shirts and paved the way for patients to not only spark conversations – but to feel better about their own relationship and acceptance with disease. To grant themselves permission to talk about a topic that is too often a combination of taboo, and overly clinical. To have more open and confident conversations with their care teams which often result in improved outcomes. And to send out their beacon of IBD. By emerging from stigma and embarrassment, people have connected, reached out, and strengthened an incredible community.
We’ve also *wipes away single tear* had some absolute powerhouse patient leaders mention that we somehow, in some little way, drove them early on to get active in advocacy and policy, helping shape the IBD patient-empowerment landscape that grants us all a little more power, a little more hope. *full-on ugly cry*
Here’s what’s on our mind, as we look at today in the context of the last decade.
The Conversation has Evolved with Technology
There has never been a bigger collection of patient voices out in the general conversation. New platforms have allowed us collectively as a patient population to create content, build communities, and illustrate life with IBD through visuals of photo and video. Micro-moments are captured, giving all of our friends, family, and followers a real glimpse into the way our disease affects our day-to-day in a nuanced way. These platforms allow everyone to have a voice, and for literally millions of versions of life with IBD to be pushed beyond our private lives, through our screens.
There will always be a next platform, a new social network, a latest-and-greatest technology. We have a rich mix of media that we can use to get creative when telling our stories, to reach new people and connect a community that’s integrated in a number of ways. What’s been an honor for us to see, however, is the thirst for patients to continue to put their lives out there, and the creativity and shamelessness with which they do it. It’s been paving the way for each new wave to feel comfortable talking about what’s becoming so much less taboo, and giving access to more and more and more humans in newer ways. Incredible.
“It’s incredibly remarkable to reflect on the ways in which the IBD community feels increasingly comfortable with transparently sharing their patient journeys. Ten years ago the patient advocacy space looked a lot different. There are so many resources and voices in the space now.”
The Grassroots Stories are Still Incredibly Impactful
With the rapid emergence of digital communication, one constant is the impact of having a one-on-one conversation with people who are in our lives. There will always be something powerful about being able to look another person in the eyes with your truth and vulnerability – to see their understanding, to tailor your story to their personality, to watch their expression through a combination of empathy, humor, enlightenment, and even the drive to fight a little harder on our behalf.
Y’all. These are the conversations that change people’s minds. These are the conversations that change the world. These are the things that people can’t get from national ad campaigns, and often not even from the digital stories that they read online, or the snippets they pick up through social.
This is us transferring our pain, our frustration, our exhaustion, and even our championing of our diseases to those around us in a real and powerful way. We urge you all to continue to have these conversations along with the digital. Look someone in the eyes, tell them what you’ve been through, and watch the impact happen.
There Has Been A Shift in Power to Patients
Ten years ago we were just two patients with an idea. Then came a shirt, then a Facebook page. Then we had a website, a stack of content, a handful of resources, and a lot of incredible voices contributing to our conversations on social media and contributing guest posts. And we weren’t the only ones.
In the IBD space and across the chronic illness landscape, we saw other patients like ourselves recognizing the power of stories, the gaps in information and resources, and the need for a connected community. We’re fiercely proud to be one of these – we’re all patients who did something about it. And 10 years ago, that was good. Our plan was to keep doing what we were doing, to keep engaging new-to-acceptance patients, to keep connecting with others.
But then the industry noticed.
In 2014 we were floored to be the first patients, with people you may know, including Amber Tresca of About IBD, and Ryan Stevens whose attempt to swim Lake Erie made national headlines and led to a documentary, to the Advances in IBD conference in Orlando – an event traditionally reserved for medical professionals. Today, patients are not just invited but are actively encouraged to participate in these conferences. It’s finally recognized that we hold a unique perspective and have the ability to report back to larger patient audiences. The trust that patients have come to place in patient leaders is something that cannot be mimicked or manufactured.
Patients of all experience levels are being engaged by industry partners – think pharma, biotech, life sciences – earlier in the process and with higher importance. We are also being engaged in a variety of ways, like influencing how the FDA shapes clinical trials in a way that increases patient benefit and lowers risk and working to address patients’ access to care at a systemic level – especially for underserved and under-believed populations. Things like co-authoring research, representing the patient perspective at leadership discussions, and fighting fiercely for better access and coverage of mental health for all patients. We’re using all of our, and all of your stories, to support these claims and leverage the industry to create the change that is so needed.
It’s a hard-to-grasp feeling, to witness and to be a part of this shift – feeling humble and grateful, at the same time as present and powerful. But we’ve gotten to a place where we’re really being heard, and we’re really making big asks, and we can never go back.
We’re at a place where patient engagement isn’t a novel idea.
It’s the new standard. We’ve shifted from a state where having patients in on the conversation was once innovative, to a state where companies begin to involve patients early in their pipelines; a state where companies who aren’t doing this are being left behind, and the community is taking note.
It’s the new standard…companies begin to involve patients early in their pipelines; companies who aren’t doing this are being left behind, and the community is taking note.
Clinical Trial Participation is Critically Important
“It’s never been a better time to be an IBD patient.” a pharma executive once said to me in passing. He was referencing the number of treatments in the pipeline, and the new scientific breakthroughs that are currently in development. In short, with new treatments with new mechanisms of action coming our way, there has never been more hope.
But, as anyone who currently relies on any type of approved treatment knows, these cannot get to market without going through the years-long clinical trials process. And the only way that treatments can progress is through patient participation in these trials.
If you’ve been in remission for a decade because of your infusion, it’s because of the patients two decades ago. If your best-targeted treatment is on the horizon, it’ll get there because of current clinical trials patients. We’re the ONLY ones that can fill that role, that can progress the science, that can bring this hope to reality and have a better landscape of options for each other.
In 1998, there were seven trials for moderate-to-severe IBD. In 2018, there were a whopping 147 trials being conducted. One hundred and forty-seven more chances for a patient like you or like us to find relief from pain, symptoms, fatigue. However, we’ve seen a trend of lower participation due to a variety of factors ranging from complicated design to more courses of approved treatments, to simply a lack of conversation between HCPs and patients when they first begin their relationship with IBD.
Even with all these efforts, there is still a critical need, and this is a top priority for nearly every pharmaceutical company out there.
“The treatment innovation we are seeing in IBD is unparalleled. With 147 trials currently being conducted, it’s a highly competitive space. Companies are being challenged to transform their clinical trials in a way that makes them more accessible and more appealing to patients. In such a competitive market, there is no other choice.
We’re seeing shorter periods of time on placebo, expanded access after the trial has been completed, integration of virtual elements, and more inclusive criteria for participation. And while I encourage companies to continue innovating to optimize a patient-centric trial experience, I am thrilled with the progress we’ve made thus far. With all this to be said, these innovative treatments can’t come to market without patients participating in trials, it is essential that the leaders of the IBD community continue championing involvement in clinical research to help get these new therapies across the finish line.”
The industry (much due to that same patient involvement and illustrative examples) is focusing on more patient-friendly trials, including simpler qualifications, better support, lower burdens of time and travel, and less or even no placebo.
There are 147+ more chances for hope, that only we patients have the power to progress.
Diversity and Inclusion are (Finally) Top Priorities
From the start of The Great Bowel Movement, we’ve promoted the power of more and more and more authentic IBD stories. In short, the more diverse stories that are shared, the more we send a comprehensive message that IBD is not the same for anyone. However, even with the best of intentions, we realize that we frequently end up in circles with people similar to ourselves, and we are not exempt. Personally, we’ve pushed ourselves to actively learn more and do better, through the stories of those who don’t look, act, and come from the same backgrounds as us.
There’s a real percentage that goes under-, mis- or undiagnosed because of a lack of access to primary care, let alone a referral to a gastroenterologist. We seldom see BIPOC discuss IBD concerns. Providers must listen and work together to unpack what is really going on.
We deserve that because our familial traditions and learned behaviors may have taught us to hold those things in – it’s the provider’s role to believe us and to use our information to get to a diagnosis and treatment.
Our issues matter and must be valued equitably to white counterparts. This imbalance of attention causes a path of further mistrust within medicine, and within the healthcare system itself. Overwhelmingly, we feel that the system has failed BIPOC. We need this to be recognized at a systemic level, we need to begin to have the tough conversations to address these critical issues, and ensure more equitable medical experiences for BIPOC patients.
In IBD, this means that male patients talk less about IBD and have very few male IBD role models to connect with. It means that understanding that women’s pain is often dismissed, being misattributed to being ‘high strung’ or a ‘head case’. It means that Black patients are going under-diagnosed or misdiagnosed. It means that South Asian patients have a challenging extra layer of cultural stigma beyond what many of us face. Every single one of these examples of discrimination has potentially detrimental effects which have actual negative results on outcomes of care and even mortality for communities of color.
It’s important to recognize the value of the first time that a single other person’s story deeply resonated with similarity to yours. It’s equally important to recognize the value of listening to, and actively seeking out, those stories that are unlike our own, so that our own education and perspective is both broad and accurate. It also drives us to fight so much harder.
There is so much work to be done yet here – from systemic racism throughout society and throughout the structure of the medical industry – to policy that protects patients, to changing general attitudes towards people that experience disease in a completely different way than our own selves.
One thing that can support all of these efforts comes back to our stories. Our own human, individual, stories that sway emotion, illustrate the statistics,and again – create authentic change, even if they are just ripples. It’s often the steady ripples that erode away the old and enable change.
2020 Made Us Show Up
*takes really deep breath*
From day 1 of our origin, we’ve always recognized the critical importance of community. We’ve compared closer to a family with a string of related DNA, more than a friend with a common hobby. It’s different, and it’s important and it changes lives. We repeat: we’ve always known this.
But in 2020, it was driven home for us, and likely for you and every single patient, more than we could have ever predicted. And while we all worked, and are still working, to do our best to manage, this community was strong, it was stable, and it showed up for all IBD patients.
When COVID entered the world, IBD and other chronic illness patients immediately understood that it couldn’t be taken lightly. Perhaps our own previous paths with disease were enough for us to bypass the denial because we know that disease is real, it’s serious, it can be life-changing, and no matter how much anyone wants to deny it, it takes control of entire parts of our lives. We looked to people like Dr. David Rubin and Amber Tresca for leading information and assurance for patients. We saw top GI doctors throughout the globe come together to not only collaborate on how to best support IBD patients but to lay an example for other doctors and other disease spaces.
We shared emerging information and rapidly addressed misinformation with that which was more reliable – information and decisions that can literally mean life or death. We supported each other through the fears of having to go in for colonoscopies, or the adaptation to virtual telehealth appointments (which, by the way, will be here to stay and an integrated part of many people’s care plans). We saw patients give so much of themselves, even when they didn’t have anything to give, lessons we’ve likely learned from having to learn to be a chronic illness patient – and seeing it all matter on a global scale.
We recognized our own strength, once again, perhaps because we had built it up upon our own individual diagnoses, and we felt a collective sense of ‘in this together’ as we all learned to navigate a world as a chronic illness patient, and maybe even found a little more empathy from those around us, who were often experiencing fear, anxiety, and instability like never before.
COVID primed the pump, so to speak, for civil unrest that erupted around Memorial Day. A world stressed by the virus, the economy stretched thin, and a looming US election was enough that many of us broke.
And sometimes you have to break to truly rebuild.
Stories of Black lives opened many people’s eyes to the systemic problems that do exist, that have always existed, and that is amplified for BIPOC who are also patients of chronic illness.
These stories, they all hold so much power. Every single one that gets put out there.
People stopped being comfortable and recognized that if you were comfortable, you were doing it wrong. We actively took time to seek out and better understand the hurdles that underserved populations face in the healthcare system, the fact that long-standing medical data is based on white people from metro areas, and the detrimental effects that simply being a person of color can have in your course and outcome of treatment. Within our disease community and overall, people began to recognize the difference between tolerance and anti-racism, and although we’ve still got a long way to go, we’re hopefully at least pointed in the right direction.
So What’s Next?
As we look forward, we’re experiencing similar feelings that we had in our very early disease journey – exhaustion, frustration, the hope for improvement, but also the fight to do our part, to lift up others, to combine power because we can all make it just a little better, and that means something.
This past year, our 10th year, it means a lot actually. Because patients are still entering their journey with IBD, we’re doubling down on our mission to lead patients to acceptance, openness, and conversation. 2020 was challenging AF, no doubt. But just like IBD, there is growth, perspective, and ignition.
If you’ve been with us since the beginning, we appreciate you. If you’re just finding us now, we appreciate you too. We recognize that your story has power, and it’s our mission to make sure you recognize that in yourself, in others around you, and know that at every point along the journey – ours as an organization, ours as patients and caregivers, yours – wherever you are – we are the stories that instill the ripples that create the waves that make a movement. We are what change the world.