On June 23, 2024, patient advocate Ivy B. Elkins, 57, died after living with and managing EGFR-mutated lung cancer for more than a decade.
Despite living with lung cancer, Ms. Elkins, who was diagnosed in December 2013 at the age of 47, dedicated her time during the past several years to helping fellow lung cancer patients, improving lung cancer research through her fundraising and advocacy, and all the while raising her sons Adam Elkins and Jared Elkins with her husband Ben Elkins.
Ms. Elkins’ advocacy resumé ran deep. She served as a consumer reviewer for the Department of Defense Lung Cancer Research Program, reviewed grant proposals for the American Society of Clinical Oncology’s (ASCO) Conquer Cancer initiative, and was an advocate faculty member for the ASCO/American Academy for Cancer Research (AACR) Methods in Clinical Cancer Research Workshop. Her mentorship for the AACR Scientist-Survivor program and the IASLC STARS (Supportive Training on Research and Science) program, as well as her service on the Yale Specialized Programs of Research Excellence (SPORE) in Lung Cancer and the University of Chicago Community Advisory Board, were testaments to her commitment to ensure that future patients would benefit from the advancements she fought to support.
Ms. Elkins is probably best known for her work in catapulting the EGFR Resisters advocacy organization to the international stage. The organization was founded by Ms. Elkins along with six others (five patients and one caregiver advocate) in 2017. The mission of the EGFR Resisters is to improve outcomes, turn EGFR-positive lung cancer into a manageable disease, and to address critical and clinical research gaps through continued research. With her help, the organization has grown to nearly 6,000 members and has partnered with LUNGevity and the Lung Cancer Research Foundation to award more than $1 million in grants to drive forward EGFR lung cancer research. Data from PRIORITY, a patient driven research initiative using the EGFR Resisters Facebook community was presented at IASLC’s North America Conference on Lung Cancer. In partnership with fellow patient advocate Jill Feldman, MA, Ms. Elkins worked to host the EGFR Resisters Research Summit, which has mentored and trained many trainees and young faculty in EGFR related research. The Summit hosted its 5th class of investigators in November of 2023.
In addition to her work with EGFR Resisters, Ms. Elkins served the IASLC as an integral member of the ILCN editorial group, providing valuable insights and commenting on key issues from the patient perspective.
“Ivy was an invaluable member of the ILCN editorial group,” said ILCN Editor Corey Langer, MD, FACP, Director of Thoracic Oncology at the Abramson Cancer Center and professor of medicine at the University of Pennsylvania. “She regularly attended our biweekly meetings, radiating warmth, energy, and concern, and acted as a crucial patient voice as we debated which topics to cover. Her advocacy on behalf of the lung cancer community was fierce and welcome. Without question, she was a true “tzaddika,” a righteous individual and an inspiration to us all. She will be deeply missed by all of us at the ILCN and the IASLC.”
Ms. Elkins was also a member of the IASLC Patient Advocacy Committee and served as a mentor for the association’s STARS program in 2020.
Previously, Ms. Elkins had a successful career in finance. She held an undergraduate degree in English from Princeton University and an MBA in finance from the Wharton School at the University of Pennsylvania.
In addition to her husband and sons, she is survived by her mother Joan Horowitz and was preceded in death by her father Irwin Horowitz. In lieu of flowers, memorial contributions may be made to the EGFR Resisters.
Lung Cancer Takes Yet Another Bright Light
By Jill Feldman
Lung Cancer has taken yet another bright light from our world—a beautiful soul. However, it can never take away Ivy Elkins’ impact on countless lives—a testament to her strength and resilience that inspires us all.
Ivy was diagnosed with stage IV EGFR-positive lung cancer at only 47 years old. Despite this devastating diagnosis, Ivy thrived for 10 years. She was keenly aware that she was on the cutting edge of research and alive because of these advancements, benefitting from innovative research and treatments that emerged just as she needed them most. While grateful for the advancements in treatment, Ivy was not comfortable without a complete understanding of her disease, treatment plan, and prognosis, so she educated herself as much as possible so she could advocate for herself. Ivy’s desire to learn as much as possible transformed her experience into a mission and fueled her passion for advocacy.
As Ivy became more involved in the lung cancer community, she soon realized that many others were not as well-informed about lung cancer. She felt she needed to help them as much as she could. Ivy became a pillar of support and a source of wisdom for countless individuals worldwide. Her profound impact—changing lives in a mere moment by sharing knowledge and instilling hope—will continue to inspire countless others.
What started as a few opportunities to share her story and raise awareness led to Ivy developing an interest in the science of lung cancer. Again, her desire to learn as much as she could led to her becoming a powerful research advocate. Ivy and I would always say that a cancer diagnosis often ends one’s career, but for us, we built a career within its confines!
Pioneers of research and progress are acknowledged in published articles, on the big stage at conferences, and with awards and other accolades. However, patient advocates, like Ivy, are behind the scenes demanding better treatment, asking difficult questions, and pushing researchers, institutions, and companies to ‘do better’ and change how research is approached.
Ivy was a relentless advocate who embodied the essence of patient-centered research and care. Her tireless dedication, inspiring leadership, and collaborative spirit drove the growth of the EGFR Resisters. In fact, in just 5 years, our community raised more than $1 million to fund patient-driven, patient-funded research, which Ivy was most proud of because, not too long ago, a patient’s only role in research was participating in studies. Thankfully, just a few days before she died, Ivy could see—and celebrate—that the EGFR Resisters surpassed its fundraising goal to fund two new research projects.
Beyond Ivy’s role as an advocate, Ivy was a loving wife, a proud mom, and a dear friend to many. Ivy’s strength, resilience, and sense of humor were truly remarkable. Ivy could light up a room with her infectious laughter, magnetic personality, and effervescent smile. Her spirit was indomitable. Her spirit made many believe that, despite her prognosis, she was full of life, so there had to be some treatment that would be approved in the nick of time; there always was! Unfortunately, there wasn’t this time.
Ivy and I had the privilege of advocating together and traveling the world to conferences, programs, and speaking opportunities. One of our friends humorously nicknamed us #Jivy, a name that stuck and perfectly captured the spirit of our friendship and our mission. We worked hard to disrupt entrenched paradigms and provoke change, but we played just as hard. We laughed a lot, but we also shed our share of tears. We never gave up and always believed that nothing, not even Lung cancer, could defeat the human spirit.
Join me in raising a glass or eating a piece of chocolate for Ivy, who very much enjoyed a glass of good wine and a fine piece of chocolate!
