I fucking hate Pinktober. It’s everything that is wrong with breast cancer culture. You can put pink on literally anything in the name of “breast cancer awareness” as though that actually saves any lives, and suddenly you’re not a fracking company, you’re a “corporate citizen.” A huge number of the pink ribbon products that appear EVERYWHERE in October give literally zero dollars to breast cancer causes, even awareness ones, and even less give money to actual research or patient support. For me, it’s like the whole world is rubbing it in my face that I’m going to die and becausehalf the country thinks they’re helping by buying pink shit, when they’re actually not. During Pinktober, I feel frustrated, angry, impotent, and full to the brim with grief, for my life being cut short, for the friends I’ve lost, for the friends I will lose.
But this year, October won’t just be a shitshow of making the rest of the world less frightened of a genuinely deadly disease. No, this year, us metsters aren’t going to just sit by and wish it was different. This year, we’re taking it to DC, and I want you to come with us. Yes you, person who has never had breast cancer, and you, person who had early stage disease and will always have a fear of recurrence in the back of your mind. All. Of. You.
MET UP, an organization dedicated to saving the lives of people with metastatic breast cancer, is hosting a die-in on the west lawn of the US Capitol building, at 11AM on Tuesday, October 13. We’re hoping to have 1430 people there, from all walks of life, to represent the 1430 people who die every day of metastatic breast cancer around the world. We’ll gather at 11, and at noon we’ll lay down, in honor of the 1430 who will die that die, and read a eulogy to them.
And then the leaders of our movement will sit down with Congressional staffers and ask them for 3 things. The first thing we want is increased funding for cancer research. The percentage of research proposals that get funded by NIH and other federal agencies has decreased substantially. It’s not that all those ideas that aren’t getting funded are bad ideas. It’s that we don’t have the money to pay for them. Which is why we need more money. And we don’t want to fight with other types of cancer for money–we want more money for everyone. Treatment for metastatic breast cancer is equally as horrific as it is for metastatic lung cancer, metastatic pancreatic cancer, or any other terminal cancer. We’re all in this shitty situation together and we all need more research to save more lives and to make our lives better.
The second thing we want is for 30% of the breast cancer research funds that Congress appropriates to go to metastatic disease. Currently that figure is 7%, despite metastatic breast cancer accounting for nearly all breast cancer deaths. If we have any chance of changing metastatic breast cancer from a death sentence to a life sentence, and from a life sentence to a curable disease, then we need research dollars to go towards saving the lives of the people who are dying.
The third thing we want is for the National Cancer Institute’s SEER database, which tracks the incidence of cancers, to begin tracking when a patient has a metastatic recurrence. There has been a lot of debate (especially lately) about what percentage of people with early stage breast cancer will develop metastatic disease, and the reason there’s been debate about it is because we literally don’t keep track of that. Adding that datapoint to SEER would give us a picture of just how effective or ineffective early detection is, and would help us to better understand which types of breast cancer are more likely to metastasize. All of this helps with ensuring that researchers can focus their efforts where they’ll save the most lives.
Now, I said before that I want you to come to our event, AND I MEAN IT YOU BETTER BE THERE OR I’LL CRY AND CRY. But if you’re in treatment or otherwise can’t make the trip, then I’m going to suggest that you write to your member of Congress and ask them to support these three legislative goals. If you need a model letter that you can personalize, drop me an email at firstname.lastname@example.org and I’ll send you one. I don’t often ask all of you for help, but I do often hear from you guys asking how you can. This is a way you can make a HUGE difference.
We’re asking everyone who’s planning to attend (my plane tickets are bought SQUEEEEEEEEE!!!) to let us know you’re coming at the link below. Or, if you’re not on Facebook, just shoot me an email or tweet at me or something.
Special bonus to anyone who’s stalking me: I promise to hug each and every one of you who comes to the event. (Unless you’re like my friend Jo, who isn’t a hugger.)
I don’t know if you can tell, but I’m super excited about this event, so spread the word that we’re taking October back and it’s gonna be AWESOME. I’ll see you all on October 13!