Our Last Conversation With Champagne Joy Was A Powerful One

This is a tribute to the self-titled "blue-haired wonder internet phenom," Champagne Joy, who was a sort of Joan of Arc for the metastatic breast cancer community. She made it her mission to peel back the pink ribbon and look at the disease for what it really is. Her hashtag-turned-nonprofit-community #Cancerland was her life's work and has been featured by social change powerhouse publishers such as Refinery29, Essence, BBC, and the New York Times.

Part of that work recently was helping organize the AnaOno x #Cancerland show for New York Fashion Week, titled "Exposed." The interview we conducted to cover that event included a lot of very inspiring and enlightening opinions by Champagne Joy about her recent projects and her prospective ones. In light of her passing, our team chose to release this interview so that we were sure we did all we could to help her legacy live on.

Note: This interview has been edited for clarity and consistency. Trigger warning: audio files play clips of Champagne Joy speaking during the interview.

IHadCancer: So, just to get the big question out of the way: why have a fashion show about breast cancer at all?

Champagne Joy: If 1,500 people didn't die a day of this disease, maybe there would be time for new awareness. But there isn't. So people are just going to have to become aware as we go along.

My goal really is to, at this point, find a way to keep people alive and get money into research toward a cure while they're being kept alive. With metastatic breast cancer, we are at a tipping point which-- a mirror of right before AIDS got its cocktail. And so as we bury people every single day -- young women that should have had a life ahead of them -- we're finally at a point where, if we can remove the impediments, we can at least see this become a chronic disease and during that time, if research is put toward a cure, we could do it all.

I really had this notion of doing a fashion show for breast cancer patients at New York Fashion Week, with actual non-models, with actual people with the disease. When Dana Donofree and I came together on this idea, it's almost like "Boy, we're so stupid, we should have done this together sooner." Once we said it to each other, it was so obvious and so good and so fantastic. It was so much about this casting of women and this idea of showing the world what beauty really is.

IHC: Mira Sorvino opened the show by saying "We live in a world of conformity." What does that mean to you?

C: We live in this world where there is an arbiter of what people should look like and then we all follow suit, and what sets this apart is that we're going in the other direction. We're becoming the arbiters of what should be considered true beauty, which is your own individuality.

As I find often with the disease itself, it's not what people think it is and you really have to get them to understand.

And that there is a parallel between a woman not getting equal pay means they won't get equal research money. And that if it's ok not cure my illness because I'm a woman, it's ok to have human trafficking, and if it's okay to have that then you have domestic violence. All of these things-- they stem from the same inequality.

Plenty of men get breast cancer, and they get really screwed because their white male privilege suddenly doesn't exist because they happened to get in with a disease that's been neglected because it's a woman's issue. So when you tell me that I'm dying of a disease, that 1,500 people will die of today and every day because that number hasn't changed in 40 years, then I say, "What's wrong with this picture?"

This is not about looking the way you want us to look, this is about Revolution and Evolution. We called it "Exposed" for a reason. It was all about this change, and I do believe that if there's going to be change within the legislative structure and the research numbers into this disease, it's going to come from the voice of a generation of young women that are outraged that this was never looked into, and therefore they were condemned to die.

And so, women need to bind together and say "My identity says that I'm more than equal. I am deserving of life, I am deserving of a cure, and I'm going to make sure it finally happens."

IHC: Do you feel as though a core mission behind "Exposed" has gotten lost between the lights and cameras?

C: The fashion show is not the party at end of the story; it's the beginning. So from here, now that everybody's looking in this direction, that audience needs to talk to themselves about what's the next step and I can tell you what the next steps need to be. There are a couple of legislative changes that need to happen to remove the impediments in treatment. So not only is this world fighting for this country to keep the Affordable Care Act, because obviously that would tragically doom everybody with breast cancer to death because of the pre-existing condition clause and CAPS, but on top of it, we need access to drugs.

So yes, the fight continues. I want to go to Washington and make legislative change. I'm scheduled to go to Rwanda and join workers for metastatic women there next month because they have no treatment and no advocacy at all.

IHC: What other projects are you working on to help the metastatic breast cancer community?

C: There is a law that I am looking to -- an actionable law that I am looking to bring into play which has to do with having metastatic disease be seen in the insurance code as equal. Meaning, if I'm taking a breast cancer drug in combination with a renal cancer drug, and I have breast cancer, then that drug should be the same cost to me as the guy with the renal cancer. So instead, because it's separate, renal cancer drug costs $100. Renal cancer drug to breast cancer patient costs $30,000. Because it's not seen as the same thing.

So I want to make a legislative change where in the insurance billing and coding law, all metastatic disease is seen as equal. Because then, people could get their meds, people can take their meds, and they all cost the same thing and when you start to see combinations of drugs, you start to see people living -- instead of 10 months, you start to see them living 20 years. It's how they treated AIDS, it's how they treated Hodgkins, it's the answer.

The National Right to Try law has been sitting in the House with votes since October and hasn't been voted on because it was lame duck, so now we're going back to Washington in early April. Call your local representative and tell them you want a National Right to Try law and you want, you know -- on any level, this is a tweet, this is -- any level of government that you want to get involved. Obviously, we would like them to come out to my website and put some money in because God, we need it -- they can write to their local congressperson, they can tweet to their local representative

We like to think that if we're going to be embraced in the public eye that people simply say "I don't want to live in a world without women." If you look at the scourge for what it is and not what it's portrayed, you can say -- yeah, there is the potential here to end this disease. You've got an entire generation of young women dying off at a young age, and we can do something about it and we must.

Rest in peace, Champagne Joy. Your friendship to our staff and your incredible dedication to the breast cancer community will not be forgotten.