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.