In Memoriam Beth Caldwell, Advocate

by Elissa Malcohn

Beth Caldwell's death on Nov. 2 stunned and saddened the breast cancer and especially the metastatic breast cancer community, even though she had warned us. "I know a lot of you were hoping there’d be some miracle out of this PET, and this is not easy news to take in," Beth had written in her blog, "The Cult of Perfect Motherhood".

Beth Caldwell

"Watching your friends die is AWFUL. I’ve watched so many friends die, and it’s never been remotely OK. And now, y’all have to watch me die. But, that’s life. It’s shorter than it should be, and it comes with horrible things—pain, fatigue, wheezing, inability to walk more than 20 feet…but you know what? For now, I’m alive. I get to watch my bathroom getting remodeled. I get to watch my kids dress up in costumes. I get to watch them play with our new dog (her name is Nova and she’s perfect). This is the life I have, and I’m going to enjoy it."

Less than three weeks later, she was gone. Beth was 41 and had been diagnosed with metastatic breast cancer 3-1/2 years earlier. She leaves behind her husband, J, and two young children.

Many knew Beth much better than I, but even from just reading her blog and her tweets I knew that Beth's life and work made a tremendous impact and continues to do so posthumously. "Beth taught me so much about true patient partnerships, advocacy, & the urgency of research," tweeted Dr. Nikhil Wagle, MD, a breast cancer oncologist and metastatic breast cancer researcher. Dr. Wagle leads the Metastatic Breast Cancer Project at the Broad Institute of Harvard and MIT. In addition to performing state-of-the-art genomics research, the MBC Project stands out for its collaboration with metastatic breast cancer patients, patient advocates, cancer researchers, physicians, and clinical specialists. "She helped shape [the MBC Project]. We will miss her."

Dr. Nikhil Wagle, Md

Diane Mapes, a writer for the Fred Hutchinson Cancer Research Center ("Fred Hutch") in Seattle and a breast cancer survivor, had met Caldwell two years ago. Mapes had asked local cancer patients to come to Olympia to testify about the need for research funding.

"She was impeccably dressed & bald w/fresh wounds on her skull from [radiation treatment]," Mapes wrote. "She was also wickedly smart & funny & incredibly fierce. Beth's voice is what I will remember the most: fearless, audacious, in your face. It was glorious. People listened that day in Olympia. And they have continued to listen. Thanks to her advocacy on behalf of metastatic breast cancer patients, policy is changing. That's huge.

Double Whammy

A former civil rights and disability rights attorney, Beth and her friend and fellow "metster" Jennie Grimes had co-founded the nonprofit activist group METUP.org. Patterned after the AIDS activist group ACT-UP, MET-UP lobbied for research funds and organized "die-ins" to draw attention to those "dying for a cure." In addition to her support for the MBC Project, Beth also spoke out on behalf of Metavivor.org, the only organization in the U.S. to exclusively fund MBC research.

Beth used her own travails to help others. A year before her death, she was fighting to get the medication she needed to survive after her insurer had denied her. She blogged on November 4, 2016, "When I look at the data on this treatment approach, and I see that the 30% of patients who couldn’t get combination therapy are all dead, and that 93% of the patients who got combination therapy are alive? Yeah, I don’t just see numbers. I see people. I see my friends. I see Michelle and Jill and Holley and Carolyn and Sarita and Adrian and Ishuan and Jean and Vickie and Jody and Maria and and and…and I think 'What if they lived long enough for combination therapy? Would they be alive right now?'"

After almost a month of fighting, including heavy use of social media, Beth wrote on Nov. 28 that she had finally been granted coverage. But she didn't stop there.

Beth Caldwell Oxygen

"I plan to use what I’ve learned to help as many patients as I can get access to the drugs they need to keep them alive," she blogged. "If you or someone you know is having trouble getting access to drugs, please contact me. I intend to use my social media platform and my contacts in whatever way I can to help patients get the drugs they need. That includes holding insurance and pharmaceutical companies to account for their actions–for high drug prices, for bureaucratic hassles, for decisions based on profits and not patient lives….This battle has been won, but there are more battles to be fought, and I won’t stop fighting until all patients can access the drugs that they need." 

On November 6, I and others at Breast Cancer Social Media (#BCSM) gathered on Twitter to remember Beth, to comfort each other in our grief, and to share our own ways of coping. Moderator and #BCSM co-founder Alicia Staley asked, "How can we continue to support the metastatic community and the breast cancer community at large as we continue to mourn?"

Angela Alexander, a postdoctoral fellow in the TRIUMPH translational cancer research program at MD Anderson in Houston, spoke for many when she answered, "Keeping Beth's memory alive through continuing the work she did."

Tweeted Stephanie Graff, a breast oncologist at Sarah Cannon HCA Midwest Health, "A lot of breast oncology professionals I had not seen engage the advocacy community before tweeted Beth's last few blogs. They were listening."

Social*Fly raised the pervasive issue of the lack of attention given to MBC when it comes to breast cancer awareness, including the knowledge gap even among early-stage BC patients and the need to close that gap through education. As Beth had written less than nine months before her death, "When we point out that Komen spends a tiny portion of their budget on research and a huge portion of their budget on 'public health education' that includes $40 million in marketing, does that make Komen happy? I doubt it. But it’s the truth, and it’s a reason why MBC continues to kill 40,000 Americans every year. When we point out that Novartis made $11 billion in profits last year and charges exorbitant prices for cancer drugs, does that make Novartis happy? My guess is no. But it’s the truth, and it’s a reason why people die of financial toxicity.

Darryle Pollack, one of the first women journalists in television news and co-founder of the WHOA (Women Honoring Our Age) Network, tweeted, "I would like to help support @METUPorg. Need [people] who are not metastatic to get involved." Added screenwriter Kathy Gori, "People just don’t seem to realize that all that over and done aware stuff is bullshit….Then I worry about being Debbie Downer pissing on their pink parade."

Three-time cancer survivor Liza Bernstein noted that Beth's death closely followed the death of another in our group, which had followed other recent losses. "Rachel, Susan, Jody, Lori, Beth - major advocates. [And] those who maybe had a smaller footprint but [who are] just as important."

Fred Hutch has established a fund in memory of Caldwell: "This fund will go specifically to Dr. Kevin Cheung, an MBC researcher at Fred Hutch who Beth knew and believed in. One of her last messages read: 'Get Kevin’s research the money it needs!'" You can donate to the fund HERE 

After Beth passed away, her Husband made this final post to Beth's Blog:

Final Post

Today's Guest Blog Post was submitted by longtime WhatNexter "Ejourneys"

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