LUNGevity Leaders Discuss Their Commitment to Educating Lung Cancer Patients About the Importance of Biomarker Testing
In this Precision Medicine Podcast episode, we are joined by Dr. Belinda King-Kallimanis, Director of Patient-Focused Research at LUNGevity—an organization that brings together research, education and support services for patients and caregivers in the lung cancer community—and Nichelle Stigger, LUNGevity board member and lung cancer survivor. They sat down with us to discuss everything from the importance of patient-friendly language in lung cancer to discrepancies in access to biomarker testing and what LUNGevity is doing to improve the status quo.
Stigger, who was diagnosed with a rare form of lung cancer and who is African-American, found LUNGevity during her treatment journey and quickly found that she felt less isolated and better armed with information she needed to advocate for herself. She notes that because her lung cancer diagnosis is so rare, there were a lot of assumptions made that were not in her best interest. King-Kallimanis says that’s why LUNGevity performs studies to understand how patients are being treated and what their experience is within the healthcare system.
One such study that has been going on for a year at LUNGevity asks participants 18 and older to share their experiences. This study is ongoing and can be found at this link. There are no inclusion, exclusion criteria, and it doesn't matter what type of diagnosis these patients have. Histology, biomarker, doesn't matter. Among other things, study participants are asked questions about their experiences with accessing care, whether they were offered biomarker testing, and about any barriers that they experienced. Did they get their results quickly or did they have to wait? Did they have to start another treatment while waiting for those results? The goal is to understand the real-world experiences of lung cancer patients and compare them to clinical data to reach new levels of understanding.
Dr. King-Kallimanis says that there is a need to explore opportunities for provider and patient organizations to create joint patient- and provider-facing educational tools so that treatment becomes a collaborative endeavor. Stigger notes that as a black woman, she felt there was an expectation that she would not understand what the doctor or the pulmonologist was explaining to her and that needs to change.
King-Kallimanis adds that patient advocacy groups like LUNGevity can help drive the adoption of biomarker testing with programs like LUNGevity’s No One Missed campaign, which aims to build public awareness of biomarker testing and the fact that it really should be part of every non-small lung cancer diagnosis. She notes that the program provides information and tools to help people advocate to get biomarker testing.
These two women represent a movement to change the exclusivity of the language of lung cancer so that patients can be more proactive in their own treatment decisions, and we were amazed by how successfully they are doing it. We encourage you to listen to the full episode for a fresh perspective on what is changing, and what still needs to change, in the precision medicine space.
OFFICIAL SPONSOR OF THE PRECISION MEDICINE PODCAST
Download the full transcript of the episode here (pdf).
Like what you hear? Please spread the joy...
Share the Precision Medicine Podcast with your friends
Leave a review and subscribe in your favorite podcast app!
Follow us on Twitter @PMPbyTrapelo
Follow us on Linked In
Don't miss the next Precision Medicine Podcast episode...
About Our Guests
Dr. Bellinda King-Kallimanis
Director of Patient-Focused Research at LUNGevity
Dr. Bellinda King-Kallimanis has worked in patient-focused research for the past 17 years. Her background in statistics and measurement provides a solid foundation for working with patients and caregivers to design research studies that aim to connect the patient voice with healthcare professionals, regulators, policymakers, and developers of drugs to ensure that their voices are heard and incorporated into decisions.
Prior to joining LUNGevity as Director of Patient-Focused Research, she worked at the US Food and Drug Administration in the Oncology Center of Excellence on the Patient-Focused Drug Development team. There, Dr. King-Kallimanis worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials. She received her Bachelor of Social Science and her Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands.
LUNGevity Board Member and Patient Advocate
Nicelle’s mission is to help other women of color survive the thrive during their cancer journey. To be seen, heard, and valued in the cancer community. Nichelle’s experience as a patient and her passion as an advocate for women of color will allow organizations to understand the intersectionalities of healthcare.
Nichelle’s lung cancer journey began in 2016 when she was diagnosed with a rare form of lung cancer found in only 1% of patients. After two surgeries, including removing her left lobe and lymph nodes, she has been cancer-free since 2017. She has made it her mission to education, engage and organize those in powerful positions to bring about change in the pursuit of equity for the lung cancer community.