Honoring the memory of Linnea Olson: long-term ALK survivor, clinical trial pioneer, fierce lung cancer advocate, loving mother of three

The ALK world and more broadly the lung cancer world lost one of its most precious and vocal voices on November 15, 2021, ironically during Lung Cancer Awareness Month and only days before her 62nd birthday. Linnea Olson set a paradigm in the treatment of lung cancer and left a void that is hard to fill. Linnea served as a valued Board member of ALK Positive Outreach Management Group (what is now ALK Positive, Inc.) and continued to be a member of the ALK Positive, Inc. Clinical Trials Committee under the umbrella of the organization’s Medical Committee until her passing.

Numerous tributes were written in the days and weeks following Linnea’s passing. This is no surprise to anyone. If you have spent even a little time in the lung cancer world over the last decade and a half, chances are you knew Linnea, had read her impactful blog, had met her in person at one of the numerous conferences she had been invited to speak at, or knew about her contribution to medical research, with many of the drugs she tried first that are now standard of care for hundreds of thousands of ALK patients around the world. We have chosen to re-publish a very thoughtful tribute to Linnea written by John Novack and published in the “Society for Participatory Medicine ePatients Blog” with the author’s permission.

With immense appreciation and gratitude for your energy, passion, commitment, fighting spirit, and advocacy that forever changed the lung cancer world, the entire ALK community will greatly miss you, Linnea.   

*Our gratitude and appreciation also goes to each and every patient who, like Linnea, has taken part in early phase clinical trials, with all the risks this involves, paving the way for current and future patients.

Linnea Olson: An Appreciation of a Giant

By  John Novack | December 15, 2021

Pioneers of medical progress are lauded in published articles and by their professional peers. But it is often the patient advocates, particularly those who demanded better treatment, spearheaded clinical trial advances, and bravely took on institutions and standards of care, who are the underappreciated giants on whose shoulders such research pioneers stand.

Linnea Olson, a mother of three, artist, writer, social justice activist, research astronaut, humanist, and giant, who lived with lung cancer for 17 years, died last month, just days shy of her 62nd birthday.

I’ll pause here and suggest that if you aren’t familiar with Linnea, check out her perfectly named blog, “life and breath: outliving lung cancer for the terminally optimistic”, and her November 2019 Boston TEDx talk, “Patient, parent, person, research subject”. 

Standing on stage at WGBH Studios in Boston to deliver that TEDx talk, Linnea said plainly, “From the moment I was diagnosed, I set my sights on being an outlier.”

And what an outlier she became. Linnea participated in six clinical trials, which served as landmark studies that changed the course of lung cancer targeted therapy the world over. Scans of her lungs are on display at the Paul S. Russell Museum of Medical History and Innovation at Mass General Hospital. By surviving, by propelling research, by collaborating with leading researchers, and by lighting the way for more clinical trials, she became a preeminent figure in lung cancer research.

The Internet’s global growth sparked the rise of online support communities where patients, caregivers, clinicians, researchers gathered to share information and give support. Linnea launched her blog more than 15 years ago. That in itself makes her a pioneer among healthcare blogs. “life and breath” stood out immediately because of its intensity, rawness, and, drawing on the title of her blog, its optimism–despite her terminal diagnosis. For someone so sick, she exuded life.

Back in 2019, an hour after she delivered her TEDx talk in Boston, Linnea gathered with friends at a nearby restaurant for a pre-birthday celebration. Standing over her birthday cake adorned with candles, she joked that she never thought she’d see so many birthdays. A fellow lung cancer patient advocate hugged Linnea’s shoulders, remarking that so many cancer patients view Linnea as an inspiration, a beacon of light.

“I know, I know, and it’s hard,” she replied, smiling, but with a tightness in her voice.

Two Fridays ago, Linnea’s three children, August, Jemesii, and Peter, gathered with relatives and friends in Haverhill, MA, for a memorial celebration for Linnea. Clinicians from Mass General Hospital mingled with cancer patient advocates, and with her close-knit community of fellow artists. Linnea’s paintings and assemblages ringed the room. Jessica J. Lin, MD, one of the MGH care team, told the crowd, “Linnea pushed us to do better, to take a step back and really ask the hard questions, the ‘whys.’ Why certain things were done in a specific way, whether it was in clinical trials or in medicine in general. And,” Lin continued, “if the ‘why’ was not so clear, to shed more light, and sometimes even change course.”

Alice Shaw, MD, who was part of Linnea’s care team for more than a decade, referred to Linnea as a hero, and trailblazer. “She transformed the way we think about clinical investigation and innovation, and redefined, I would say, entirely, our expectations for Phase 1 trials,,” Shaw said. “She became the new face of clinical trials, and the promise of what precision medicine can bring to patients.”

What a legacy. Join me in raising a glass to my friend Linnea (she liked good gin), and to the other giants like her.

John Novack is a healthcare communications consultant who volunteers for the Society for Participatory Medicine and a number of other health-focused organizations, including Health Story Collaborative, AnCan, Journal of Health Design, and Collaboration for Outcomes using Social Media in Oncology (COSMO).