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.