Meet the Advocate: Anne Marie Mercurio

Anne Marie was diagnosed in the spring of 2006 with invasive lobular breast cancer. Eight rounds of chemo followed (as did a decade of endocrine therapy). That chemo took the toll it too often takes: in her words, “I knew my brain was scrambled [by it]”.

She turned to a clinical trial of an intervention designed to help those suffering from chemo brain. She found, though, that the eligibility criteria were so restrictive that she “failed” the trial’s cognitive assessment for entry, scoring higher than the allowed cutoff.

Devastated, she spent a long clinic visit with the trial’s PI outlining her cognitive challenges. After a subsequent four-hour cognitive assessment, she got a call back from the study team telling her she was, in fact, eligible for the trial. 

Anne Marie later learned that, based on that visit with the PI, the study team had filed a protocol amendment – her pushback had made them realize the eligibility criteria were too narrow and would quash trial enrollment.

“That’s how I started,” Anne Marie says. “It was all because I was refused entry into a clinical trial and pushed my way in ….” She also learned, she says, how powerful the impact can be when there’s a connection between a patient and a doctor who’s willing to listen.

Chemo brain had been cruel.  Coming from a career in an accounting profession, Anne Marie found that her abilities with numbers had taken a particular hit. Shifting her focus to what she could do well, in 2011 she started writing her ChemoBrainFog blog: “How chemotherapy (hopefully) saved my body and (definitely) rearranged my brain.” Over the course of a decade and more than 600 posts, the blog developed an international following among patients, advocates, and many others.

Anne Marie also found community on Twitter, getting in at the very start of the #BCSM (breast cancer social media) tweet chat, a weekly gathering of patients and advocates on Twitter that ran for 10 years. 

In the early days of our own @SWOG Twitter account, Anne Marie’s voice stood out as one of the most prominent and effective among patient advocates in the MedTwitter oncology community.

“There was something very magical about being there at the beginning,” she says, in that mix of patients, caregivers, physicians, advocates, and research scientists all having the same conversation in the same place, with no walls.

Her history with SWOG began when she was invited to speak at a cancer care delivery committee session. At that meeting, she learned that Dr. Don Dizon, whom she had known for several years, would be joining SWOG as chair of a new digital engagement committee. Anne Marie was invited to be an inaugural member of the committee, and though she feared she was already overcommitted, she couldn’t resist the chance to join Dizon in forging something new and shaping what it would become. 

Initially a member of digital engagement, she was later appointed to the patient advocate committee (PAC) as well. As the time approached to elect new PAC leadership in 2023, Dizon encouraged Anne Marie to step up to be considered for the role. Nothing had been further from her mind, but as she realized that if PAC members didn’t step up, someone from outside the group would likely be brought in, she reached out to the PAC colleague she had known and respected the longest, Dr. Barbara Segarra-Vazquez, suggesting they consider applying to lead the PAC as equal partners. They were appointed co-chairs later that year.

In the year and half of their leadership tenure, they’ve had notable success in expanding the committee’s impact, in part by establishing the Pitch the PAC program, which in 2024 reviewed about one-half of all concepts presented for executive committee triage review.

“I so believe in the work public-funded research does,” Mercurio says, “and I hope that we’re going to continue to be able to grow out this body of evidence.” She highlights the importance of researching not only how to extend the lives of those with cancer, but also how to improve the quality of those extended years.

“No one does that research better than groups like SWOG,” she says, “and there’s no better patient advocate committee than we have at SWOG.”

“It’s truly the honor of my life to be sitting in this co-chair position w Barbara.”

From SWOG’s perspective, the honor is all ours.

You can also now follow Anne Marie Mercurio on BlueSky.
 

Register now to attend our Best of SWOG one-hour research showcase on March 26th, 2-3 ET / 11-12 PT. Learn more.

Registration is also open for SWOG’s spring group meeting, April 30 – May 3, at the Hyatt Regency San Francisco. Rooms are getting scarce – reserve yours now.