publication date: Jul. 20, 2018

An Appreciation

Marlene McCarthy, formidable National Breast Cancer Coalition advocate, dies at 74

By Fran Visco

There are so few individuals who are willing to challenge authority in the world of cancer advocacy. Marlene McCarthy was one of the best at that. Marlene died on July 17; she was 74.

Marlene was a fighter. Over the years I have seen so many women and men shy away from questioning the approach of a member of Congress and from speaking out when a policy was watered down to the point of being meaningless.

Not Marlene. She had this wonderful way of establishing great relationships with her senators and representatives in Rhode Island, earning their respect and friendship, and at the same time never hesitating to make demands and tell them when they were wrong. They still loved her and took her calls.

She was creative. Marlene was first diagnosed with breast cancer in the late 80’s, then with DCIS in 2008. She had a mastectomy at that point and when her oncology nurse and surgeon walked into her room before the surgery, Marlene had a postage stamp on her breast and a message: “Mail this to Congress.”

She meant it. At the same time NBCC was on the Hill lobbying for its Breast Cancer and the Environment Research Act—and meeting much opposition—a resolution was passed by the Senate to light up the St. Louis Arch in pink for October. Marlene decided we should deliver pink light bulbs and a message to every Senator. She went to Home Depot and bought out their supply. We all walked the halls of the Senate delivering those bulbs. She was thrilled when one senior staffer took a bulb and asked, “What am I supposed to do with this?” Well, exactly our point.

A co-founder and volunteer executive director of the Rhode Island Breast Cancer Coalition, Marlene served on the Board of Directors and Executive Committee of the National Breast Cancer Coalition, on the Scientific Advisory Committee for the Love/Avon Army of Women, and the state Department of Health Public Education Committee for the Rhode Island Women’s Cancer Screening Program, among other positions.

Marlene was a graduate of NBCC’s three Project LEAD courses and served as a mentor to LEAD students. As an NBCC team leader, Marlene made the Rhode Island congressional delegation one of the most supportive of NBCC’s public policy agenda. She inspired many with her focus on NBCC’s Breast Cancer Deadline 2020 and a breast cancer-free world for her granddaughters.

She was a contributing author to “The Breast: Comprehensive Management on Benign and Malignant Diseases,” a medical reference book, and the author of several articles about breast cancer in other publications.

She was celebrated for her work many times, including with an honorary doctoral degree from the University of Rhode Island and as Rhode Island Woman of the Year and by NBCC at our annual gala. Marlene built a successful advocacy organization in Rhode Island and worked with various governors and state legislatures to effect change there.

She often spoke to medical students at different universities to give them the perspective of someone diagnosed with a disease who made it a mission to educate herself about it, learn the science, and devote herself to helping others. She made certain the researchers at Rhode Island institutions understood the importance of collaborating with educated advocates.

And on a national level, she pushed for research into metastatic breast cancer, especially brain metastasis, well before her own diagnosis. She did peer and programmatic review for the DOD Breast Cancer Research Program.

In 2011, she was diagnosed with metastatic disease. She did not stop for a moment. She deepened her commitment to NBCC, which we didn’t think could go any further. But she did. Here are her words: “I know that I will not be a breast cancer survivor…but, I have been and will continue to be a breast cancer thriver…putting my energy into Breast Cancer Deadline 2020 so that my adorable granddaughters, ages 15, 12, and four, will never hear the words ‘you have breast cancer’.”

Marlene was a kind and giving soul. She was a constant presence at the bedside of hospitalized women, and a 24/7 consoler and advocate. She and her husband of 53 years, Joe, spent much of their volunteer and professional lives helping the homeless. Hands-on help.

And she was fun. Her biggest holiday was St. Paddy’s Day. I still have a number of green leis and green fuzzy crowns she insisted NBCC board members wear around March 17. While she was suffering terribly from severe bone mets she somehow made her way to DC for NBCC’s leadership summit and annual lobby day in 2016.

She led a march in her motorized wheelchair, waiving a Deadline 2020 flag. She told me she imagined the street value of the amount of drug she had in her body allowing her to be there could fund NBCC programs for five years. She was one of the first on the dance floor at our annual summit receptions and the last to leave. And she helped us through many difficult meetings and events by leading the charge for her beloved “retail therapy” excursions. No matter where we were, she found a place to shop.

Marlene was formidable. She just would not back down. Ever. She would smile, speak in a modulated voice, and let you have it. She was extraordinarily effective. She had this amazing ability to put aside her own disease and remain focused on the needs of others in her community, an incredibly strong and fearless advocate, nationally, and always up to the challenge. Always spoke her mind—and even towards the end, wanted to do what she could to stay involved.

Two weeks before she died she was setting up a call with one of her senators to lobby for NBCC’s new priorities. And she was still responding to NBCC emails, giving her input.

Marlene had four children and four grandchildren. Marlene often said, “What makes me happy is experiencing the love and support of my family and friends. What makes me smile is any experience with my grandchildren. What lights the fire in my soul is telling the truth about breast cancer.”

Farewell, my friend. There is no one like you.


The author is president of NBCC.

In lieu of flowers, donations should be made to the Marlene McCarthy Fund at NBCC.

 

Copyright (c) 2018 The Cancer Letter Inc.