WCLC 2021 | EGFR Resisters: amplifying the voices of individuals living with lung cancer

In 2017, I, along with five other patients and one caregiver, founded the EGFR Resisters patient group. We thought that we would start by creating a closed Facebook group where only patients and their families can join and provide a safe space for people to ask questions, find support, to share experiences and for us to be able to provide best practices. And as of today, the group has grown to over 3000 people all across the world, 75 different countries.

When you’re diagnosed with a rare cancer, finding a group that understands a lived experience can be life changing, but it can also be lifesaving. Because in many of the settings where people are treated, their oncologists treat many different cancers, and don’t see many people with these oncogene-driven lung cancers. So it’s very powerful to see the communication that goes on in the group. The patients that become empowered and engaged to not only advocate for themselves, but begin to advocate for others. It is so important to have that comradery, to be able to understand what other people are going through and talk to people who understand what you are going through. So that is a very important part of our community.

One of the other goals that we had is to accelerate research into EGFR-positive lung cancer. I acknowledge I am first and foremost an advocate for all lung cancer and research into any kind of lung cancer is critical. But with the EGFR-positive lung cancer, even though it was the first mutation discovered and had the first targeted therapy approved for treatment, there’s still not many options for people after their first line treatment. So it was very important for us to be able to focus on trying to get researchers to be interested in understanding the biology better of EGFR lung cancer, to understanding resistance better and to developing new treatment options. Because most of us, like myself, are depending on that next promising treatment.

And so the way we did that was we initially started reaching out to different researchers across the country. We were interested in the work they were doing. We would schedule meetings at different conferences, and we really tried to just kind of put ourself out there and learn first, what was going on in the community. We were fortunate that a CME company, CC Oncology is what it’s called, had just done grand rounds on biomarker testing in EGFR-positive lung cancer across the country. So when they saw that our group had just gotten off the ground, they contacted us and they wanted to work with us. They were really passionate about making sure that people had biomarker testing and that they were getting the right treatment at the right time. And so they have really helped us put ourselves out there on the map. They have secured funding for us for many different projects. And the first one was the think tank that we had at ASCO in 2018. And was it was, is we brought together thought leaders in the EGFR space. And we talked about what are the unmet needs in care and what are the unmet needs in research. And from that, we created our mission. And since then, we have co-funded projects with different organizations.

With the LUNGevity Foundation, we created Project PRIORITY which was an IRB approved survey that looked at the lived experience of a person with EGFR-positive lung cancer. And the findings from that, really the analysis is ongoing. But what we found was that the demographics and risk factors, those were the same as previous published articles and research, which kind of helped us feel like we validated our study. But we looked into also the psychosocial impact, treatment sequencing, financial distress, many different areas of the experience that people go through. And the findings have been interesting and some have been devastating.

One of the devastating findings is the high rate of people diagnosed with clinical depression, which probably underestimates the amount of people that actually have clinical depression. And so what’s really important about that is that a lot of times, in some clinical guidelines, there isn’t much about screening for psychosocial distress, treating psychosocial distress and addressing and managing the stigma that affects people’s care. And we also recently at World Conference 2021 had given a presentation, Ivy Elkins, another co-founder, had given a presentation on treatment sequencing. And what we find is that even though there are guidelines and recommendations, many people are still not receiving the recommended first line therapy. Many people are not receiving next generation sequencing. And so it shows us that we need to do a better job of educating the community and the medical community. And what’s really important about medical community when I say that is, yes, we are here to educate patients and their families when they’re first diagnosed, right? But when they’re first diagnosed, they don’t find us right away. And there’s usually a misstep in treatment. So by the time they find us, it’s too late for that first shot at the right treatment.

That’s number one. Number two, the burden should not be on the patient, ever. So only educating the patient is putting a burden on somebody who is experiencing one of the most terrifying times in their life. And so that is something that we’re really trying to work on. And actually, there was also a presentation at World Conference on Lung Cancer 2021, using our findings about depression. And a young investigator had taken those findings and did some retrospective research on people in her hospital system and what type of support they received, the interventions in terms of also assessing them and how long they were assessed. It’s a very important area because there’s research that shows that depression leads to poorer outcomes.
We’ve also funded two, $200,000 awards in collaboration with LUNGevity. And those awards were actually patient driven, patient funded, and patient led. So we got to choose what we wanted to receive abstracts on, what areas of interest. And so, one of the urgent unmet need is small cell transformation in our community. There’s not a lot of research and there is no standard treatment. We don’t know much about it and it’s happening more and more and more probably, because people are living longer.

Another unmet need are the persistent cancer cells. And so kind of trying to figure out what their role is, are they dormant and what causes them to awaken and the tumor microenvironment. And so that’s another project that we are funding. And it’s just about the six month mark. So hopefully, we’ll get progress reports soon. We’re also funding research with Lung Cancer Research Foundation. We just partnered with them and we just raised the first amount. And we’re looking $75,000 and will be deciding, I guess, soon on what project we’ll be funding in EGFR-positive lung cancer. So we’re doing some very exciting things in the research space. And at the same time, we’re also really trying to advocate for health equity.

The people, the patients that I’m talking about, those are the patients that have access to cutting edge care and to resources and find our communities. That’s about 20% of people diagnosed with lung cancer. The other 80% face multiple barriers. And so I think that for us, for many people who are treated in the academic settings, or even some in the community settings that find our groups, we are the exception, not the norm. So we need to do a better job of trying to promote health equity, trying to ensure that every person diagnosed with non-small cell lung cancer gets biomarker testing, that every person has the access to quality care. But access is not the only important thing, affordability is.

You could have access to a clinical trial, but if you can’t afford to take off work or find childcare or transportation to get there, then it doesn’t matter. So another area that is so complex and complicated is that health disparity, but it is the number one restrictive eligibility criteria when it comes to clinical trials. And thankfully there is a huge emphasis on that right now in general, not just in oncology, but across the globe. And there were some really interesting sessions at World Conference on disparities and global disparities. And so hopefully, we can find a way to all work together to end these disparities.

Interestingly enough, when you look at implicit bias, a lot of disparities come from implicit bias. And I saw research not long ago from the LGBTQ+ community. And there, the percent of people who admitted to explicit bias was disturbing, but there was a large percent, over 50% of people, had implicit bias. So I think that a lot of what we’re talking about in terms of disparities and stigma and biases, they’re all connected. And there is no simple solution. What I do as an advocate is the most important thing that I can do as an advocate, besides supporting people and helping them navigate through the fragmented system, is to be a voice. I can’t necessarily speak for people from underserved communities, but I can amplify their voice.

And to me, that is really important. And it’s really important for me to be able to speak on behalf of the entire lung cancer community. And how do I know what they need? I ask questions. And that I think is an important aspect that physicians often forget about as well. Seeing the forests through the trees. So the science is really cool and interesting, but behind it are people’s lives. And so understanding people, understanding what their preferences and their goals are, understanding what tradeoffs they’re willing to make, that’s the most important conversation to have prior to talking about treatment options.