The pink culture of breast cancer is about to get an infusion of red hot.
A small but growing group of women with metastatic breast cancer and their supporters have formed MET UP, an activist group modelled on the confrontational AIDS Coalition to Unleash Power (ACT UP) and sharing the same inspiration of anger, rebellion, and fellowship/sisterhood.
"MET UP is…committed to direct action for a viable cure for breast cancer. We protest and demonstrate," reads a portion of the group's mission statement, which was recently posted online.
A changing of the guard — and of attitude and tone — is needed in advocacy, suggests the group. "The time for honey is over. Break out the vinegar. It's our turn now," the group states.
MET UP has its eye on some major powers-that-be: the federal government, Komen for the Cure, and sexploitative breast-related charities, said founding member Beth Caldwell, 38, of Seattle, Washington, a married mother of two small children whose initial breast cancer diagnosis was metastatic disease.
"We're very much in our infancy, but we have big plans," she told Medscape Medical News.
One of the roots of the rebellion is frustration over the fact that, despite 40 years of "breast cancer awareness," the average survival with metastatic breast cancer has not changed and remains 3 years. "We're not making any progress in keeping people alive," said Caldwell.
"There are many members of our group who are very angry at Komen," she continued, referring to the influential and controversial breast cancer organization.
Here's one of the reasons for the rage, said Caldwell: In 2013, Komen had $125 million in revenue but gave away only $38 million in grants (and even then, some grants were not for scientific research). "As an organization that pitches itself as 'for the cure,' they are not doing enough to actually seek the cure," she summarized.
Komen has also reportedly kept women with metastatic disease off the podiums of its rallies because the specter of death is an emotional downer, as highlighted by Medscape Medical News.
"We are excluded from the club," says Caldwell about the general aversion that pink culture — with its mantra of "beating" breast cancer — has for the people who are inexorably destined to die of the disease.
So, is MET UP — à la ACT UP — planning to storm Komen headquarters in Dallas? Not now, said Caldwell, but "Komen is definitely on our radar." The activists recognize the group has new leadership and they are waiting to see whether grant funding priorities change.
The first major direct action planned by the fledging organization is a nonviolent "die-in" on October 13, which is Metastatic Breast Cancer Awareness Day, in Washington, DC, on the lawn of the US Capitol with 1430 men and women to symbolize the daily death toll of the disease worldwide.
There's a lot to protest at the federal level.
Only 7% of all federal breast cancer research funding is earmarked for metastatic disease, despite its accounting for at least 30% of all breast cancers (either at diagnosis or by progression).
Also, last year, NRG Oncology, which enrolls about one third of all patients with cancer in clinical trials sponsored by the National Cancer Institute, said that it would no longer regularly conduct trials in metastatic disease (including that of the breast). The prominent trials group is now devoted to early-stage disease, as reported by Medscape Medical News.
To date, the driving force behind MET UP has been Jenni Grimes, 34, of Los Angeles, who progressed to metastatic disease 5 years ago. "She's the genius that kicked off the organization," said Caldwell.
MET UP has come together quickly after its principals met in April at the annual Living Beyond Breast Cancer conference for metastatic disease in Philadelphia.
At the suggestion of Grimes, 108 conference attendees, representing the daily US death count for metastatic breast cancer, staged a spontaneous die-in on a hallway floor in the Loews Hotel at the conference.
"Laying head to head, hand in hand, I heard the sobs of the women around me," writes Grimes in her emotional blog account of the action.
On the plane ride home to California, Grimes, who worked with people with AIDS before her cancer diagnosis and participated in ACT UP protests, contemplated the breast cancer movement.
"Why have we not pushed past the pretty imagery of breast cancer like our leaders in the AIDS epidemic to demand more?" she writes.
In the following weeks, a core group from the Philadelphia conference stayed in touch, and MET UP was conceived and started.
A website was quickly created, as well as a Twitter account (@METUPorg and #pinkisnotacure) and a Facebook page, which now has 125 members. MET UP has since formally protested the Young Survival Coalition's sponsorship arrangement with Spencer Gifts, which has a sexploitative Boobies Make Me Smile wristband fundraising campaign.
MET UP is purposely modelled after ACT UP, which became a global phenomenon in the 1980s and 1990s and was feared by the US government and pharmaceutical industry for its daring demonstrations, which included disrupting the New York Stock Exchange and invading the Maryland campus of the US Food and Drug Administration.
ACT UP has recently endorsed MET UP and lent the group how-to materials, including guidance on civil disobedience and getting arrested.
"MET UP. Fight back. Fight mets. In our silences lies our deaths," writes member Susanne Kraus-Dahlgren on the group's website in an essay titled "By Any Means Necessary."
Kraus-Dahlgren believes that there are direct parallels between AIDS (during the height of the epidemic) and metastatic breast cancer, including the annual death count, which is about 40,000 annually. Her rhetoric is not genteel or sugarcoated. "What have we gained from decades of smiling politely and luring with honey? Absolutely jack all of shit," she writes.
Perhaps most vividly, Kraus-Dahlgren says that the "color pink" has a "dirty black underbelly," referring to the profit motive behind so many things related to breast cancer.
Fellow MET UP-er Grimes also sees parallels between metastatic disease and AIDS during its early years.
"The terrors...the unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight," she writes in her blog.
MET UP member Caldwell says the group's breast cancer founders hope that other patients with metastatic cancer will join. "I think we have more in common with people with stage IV lung cancer than with stage I breast cancer," she said.
"I hope we will start a movement that brings real change."
Caldwell is enthusiastic about that potential for change and was recently reminded of how far a disease can come when great forces address it.
Last year, she met a man at a dinner party in Seattle who had hemophilia as a child and contracted HIV via a blood infusion. The man told Caldwell that his first Christmas with HIV was a gift bonanza, as his parents feared his imminent death.
"But here he is, still alive," said Caldwell. "That's what research can do."
Medscape Medical News © 2015 WebMD, LLC
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Cite this: Cancer Patients Start Protest Group Like ACT UP - Medscape - Jul 15, 2015.