Lung Cancer Patient Advocate and Activist, Member of the ICRF International Board of Trustees and Founding Member of the ICRF Women’s Advisory Council
Linnea's Story
Linnea Olson, a mother of three, a brilliant writer, a talented artist and a tireless lung cancer patient advocate and activist who lived with stage IV lung cancer for 16 years, died just days shy of her 62nd birthday in November 2021. Linnea served as a member of the ICRF International Board of Trustees and founding member of the ICRF Women’s Advisory Council.
Despite her terminal diagnosis at age 45, Linnea had a relentless zest for life and was truly a force to be reckoned with. Having exhausted conventional treatments three years after her diagnosis, Linnea was advised that she had less than a year to live. But then a miracle happened. A biopsy revealed a newly identified oncogene (a gene that can transform normal cells into cancer cells). By chance, a phase 1 clinical trial for an experimental targeted therapy had opened at the hospital where she was being treated. She was told that only one other person had enrolled but had quickly died in part due to side effects.
She decided to take a leap of faith and became the fourth person in the world with non-small lung cancer to take an ALK inhibitor. Within days, her lung cancer symptoms began to subside. Though not a cure, she was given another chance at life.
Linnea went on to participate in five more clinical trials, which enabled the development of multiple breakthrough drugs that are now the standard of care for lung cancer patients worldwide. Without them, she would not have survived 16 months, let alone 16 years. Throughout, Linnea’s bravery, strength, and unwavering optimism and perseverance inspired countless patients and families to keep fighting and live life to the fullest. And her fierce advocacy, all while in a life and death struggle with a terminal disease, left a lasting mark on lung cancer drug development. As an advisor to numerous pharmaceutical and biotech companies, she used her patient experience to push for changes to make trials more patient-centric and user-friendly, boosting patient participation in the process.
In her own words: “First-in-human trials are a necessary and important aspect of drug development. And for some patients, they are also the best and sometimes only treatment option. However, participation comes with a high cost. Were clinical trials viewed through a different lens—one that placed an emphasis on humanity—many of the current barriers to participation could be addressed.”
Linnea was a highly respected and beloved voice in the lung cancer community, active in numerous lung cancer organizations, and sharing openly up about her cancer journey as a frequent speaker at conferences. Her eloquent and fiercely honest blog – Life and Breath: Outliving Lung Cancer (for the terminally optimistic) -- was considered a must-read in the lung cancer community.
During her all-too-brief tenure on the ICRF Board, Linnea lent her patient perspective and unique insights to the board’s leadership and helped to educate the ICRF community on clinical trials and patient advocacy issues.
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