S1 Ep46: How a Career of Hearing and Amplifying Patient Voices Has Reached the Pinnacle of Patient Advocacy: With D. Ross Camidge, MD, PhD; and Ken Culver, MD

How This Is Building Me, hosted by world-renowned oncologist D. Ross Camidge, MD, PhD, is a podcast focused on the highs and lows, ups and downs of all those involved with cancer, cancer medicine, and cancer science across the full spectrum of life’s experiences.In this episode, Dr Camidge sat down with Ken Culver, MD, the director of Research and Clinical Affairs at ALK Positive Inc. Drs Camidge and Culver discussed the highlights of Dr Culver's career, which has been shaped by clinical practice, research, industry leadership, and patient advocacy. They noted elements of ALK Positive that set it apart from other patient advocacy groups, including its being entirely created, funded, and led by patients with stage IV lung cancer and their caregivers. Culver explained how he collaborates with patients to expand treatment opportunities, meets with companies and universities worldwide, and helps stakeholders recognize both the unmet needs and financial incentives for developing therapies for ALK-positive lung cancer.Culver detailed his path to the oncology field, which began with an intention to practice as a community pediatrician in Iowa. This led him to pursue residency training in California, where he gained diverse clinical experience, particularly in HIV/AIDS at the height of the epidemic. His early research explored HIV transmission in children born to drug-using mothers, highlighting the immunosuppressive effect of drug abuse even in the absence of HIV. During his fellowship, he contributed to pioneering work in gene therapy. He also participated in research that laid the groundwork for tumor-directed therapies, which later influenced large-scale clinical trials.Eventually, Culver explained that transitioned to industry. At Novartis, he contributed to the development of important drugs and witnessed the transformative launch of imatinib (Gleevec), one of the first targeted cancer therapies. Alongside his professional work, Culver established the Foundation for Peace, a nonprofit providing medical and community support in the Dominican Republic, Haiti, and Kenya. This initiative, which began with a mission trip in 1989, has grown to involve hundreds of volunteers annually, offering both medical care and broader community services.In his current role with ALK Positive, Culver noted that he has leveraged patient-led advocacy to influence industry priorities, resulting in several new clinical trials for ALK-positive patients. His work emphasizes balancing discovery research with near-term clinical opportunities to directly benefit patients with cancer today. He also shared how he prioritizes tools to empower patients, such as clinical trial finders, and stressed the importance of having contingency plans before disease progression. Overall, this conversation highlights a career that reflects a consistent commitment to science, patient care, and global service, guided by both professional and humanitarian values.