Patient-caregiver communities focused on non-small cell lung cancer with genomic alterations offer support, awareness and education to help accelerate research in this space.
BY Kristie L. Kahl
Patient-caregiver communities focused on non-small cell lung cancer (NSCLC) with genomic alterations have helped improve outcomes by offering support, raising awareness and accelerating research, according to patient advocate Janet Freeman-Daily.
“Why are these online groups so valuable to patients and caregivers?” she asked. “They offer hope, support, education, empowerment and connection.”
“We can see others living well with lung cancer. We can fight a dire prognosis. We can connect with others who are dealing with the same disease, the same side effects, the same treatments,” added Freeman-Daily, who is co-founder of the community known as The ROS1ders.
“We can find experts knowledgeable about the disease, which is essential given that most doctors have never treated a ROS1 cancer patient and might not know about the targeted therapies available.”
At the International Association for the Study of Lung Cancer’s 19th World Conference on Lung Cancer in Toronto, Canada, Freeman-Daily and Robert C. Doebele, M.D., Ph.D., from the division of medical oncology at the University of Colorado, presented a recent review of five patient-caregiver communities in this space: ALK Positive, Exon 20 Group, The ROS1ders, EGFR Resisters and RET Renegades.
To start, Freeman-Daily looked back on how her own group started: “In the Spring of 2015, five ROS1 lung cancer patients met at Lungevity’s Hope Summit. We were all on the same targeted therapy, we all had kids at home, and we all had no future treatment options. There wasn’t much research in to our rare cancer, and few relevant posts and online communities.”
So, they created a secret Facebook group, and now the number of ROS1ders exceeds the largest cohort of ROS1 patients in any clinical trial.
Freeman-Daily added how impressive the growth among each group has been. For example:
- ALK Positive, focused on ALK-positive lung cancer, has more than 1,200 members from more than 40 countries.
- Exon 20 Group, created to focus on EGFR and HER2 Exon 20 insertions in lung cancer, has 243 members from 22 countries.
- The ROS1ders, the community Freeman-Daily co-founded and focuses on ROS-positive cancer of all types, has 323 members from 22 countries across eight cancer types.
- EGFR Resisters, which focuses on EGFR-positive NSCLC and cancers that develop resistance to EGFR-targeted therapies, has more than 650 members from 24 countries.
- RET Renegades, which Freeman-Daily noted only formed a few months ago, already has 43 members from two countries.
“(Groups that are focused on) oncogenes that occur with the greatest frequency or that have active drugs (to treat these conditions), and have been available longer, tend to accrue members faster,” Freeman-Daily added.
Doebele stepped in to stress how critical these groups are to cancer research. For example:
- ALK Positive partnered with LUNGevity Foundation to award three NSCLC grants totaling $600,000 in May 2018.
- Exon 20 Group partnered with International Cancer Advocacy Network to assist patients in identifying and enrolling in clinical trials and fund research.
- The ROS1ders collaborated with the Bonnie J. Addario Lung Cancer Foundation and its sister foundation, the Addario Lung Cancer Medical Institute, to develop and fund two arms of the ROS1 Cancer Model Project.
“The value of these oncogene-driven patient groups for patients, caregivers and clinicians are vast,” he added. “They support each other. They increase awareness and education. They vastly accelerate research, in terms of grantmaking, helping patients find clinical trials for their rare cancers, and creating more models of rare cancers for researchers.”