Waste

Why Awareness is Stupid and Practically Pointless

Posted on by Beth Caldwell

October is coming. I hope it’ll be better this year with the big die-in on October 13, but it’s still gonna be a shitshow. I’ve been thinking a lot about why it drives me, personally, so insane, and I’ve come to a realization: it’s that awareness is stupid and practically pointless. Let me explain.

I feel like there’s a big difference between awareness campaigns and education campaigns. Education campains don’t just try to tell you some information; they also try to get you to do something. In the world of breast cancer, that includes getting people to go for routine breast cancer screening, ask their doctor about their breast density, and become familiar with their breasts so they notice when their breasts show symptoms of breast cancer. In short, there’s an ask explicit with education–it gives information that hopefully will lead people to take action.

Awareness, on the other hand, has no ask. It says, “Be aware that breast cancer exists!” It includes images of dogs wearing bras and pink ribbons on fireworks, because it’s not about educating people. It’s simply about making them aware that breast cancer is a thing. If all you want to do is to say “Hey you, there is a thing and it is called breast cancer” then yes, awareness is the right tool. But why in the fuck would you want to do that? What is the point of making sure people know that breast cancer exists? What does knowing it exists accomplish?

I can only think of one thing it accomplishes: some of it brings in money for breast cancer charities–but not all of it, because some of that awareness isn’t even related to charitable fundraising. Now, if all the money that awareness generates was being spent on education or patient support or research, then OK, I guess I’d feel OK about that. And there are many charities that are doing that, and I encourage you to donate to them. Unfortunately, there are too many (cough cough Komen cough cough) who aren’t. They’re spending it on more awareness. Which brings them more money, to be spent on more awareness.

This is why October drives me crazy: because all that awareness could be replaced with education, and then we’d really be getting somewhere. There are still too many people not getting the screening appropriate to their risk of breast cancer. There are still too many people who need to know what inflammatory breast cancer looks like. Imagine if awareness was converted from something stupid and practically pointless into something that actually DOES something. Wouldn’t that be so much better? Waste makes ne nuts. It just does. And seeing all these resources spent on awareness makes me want to stab a pen in my eye.

So, how about if we, as the breast cancer community, change the conversation from one of stupid and practically pointless awareness, to one of education? And maybe, just maybe, we can change the story for actual people with breast cancer.

How The Hubs Feels

Posted on by Beth Caldwell

The Hubs wrote this last night. I haven’t edited at all–this is purely his heart. I’d love it if you guys shared it around the interwebs.

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Saturday, February 21, 2015

Susan G. Komen
5005 LBJ Freeway
Suite 250
Dallas, TX 75244

To whom it may concern,

I am writing to you asking that you change your focus of your organization and reallocate a large portion of those funds from that refocus to an under resourced area of research. The current Komen mission is focused on education and funding research. I would argue that the first part of the mission has been accomplished and that you need to focus more on the funding research. Everyone is aware of breast cancer. From the NFL wearing pink, the various products that you can buy that have pink ribbons on them to the flowing masses of people that participate in the Walk for the Cure. People are aware of it. They are so aware of it that it threatens to lose meaning or importance of it. My observations of it has that it has become a marketing and revenue generation business, but it feels like it is a business that has lost track of its mission. The statistics I’ve been able to find show that somewhere between 15%-20% of the funds generated by the Susan G. Komen for the Cure charity are spent on research. Using your organizations own statements in the past of “83 cents of every dollar…” that means that about 63% of your funding dollars are spend supporting the other missions then research. Your organization has won the education war. In my 38 years on this earth, I’ve seen a steady increase in awareness as well as society being engaged on the issue of breast cancer. People can talk about it. People are aware of it. They know it is a problem and they know people impacted by it. The mission has been accomplished. It is time to flip the numbers around. According to your own numbers, you spent 38% of the 2013 funds on education, and only 18% on research.
I implore you to switch your mission priorities around. The primary mission should be funding research now and not education. Research funding has been being cut left and right at all levels in science, and while the amount of money that Komen is providing in grants has been up, the percentages are not, or at least not that I have been able to find reference material on. You should instead refocus much of those education dollars on research for stage IV and prevention of cancer progression from the various stages. That we need more then treatments and that while are quick to point out 5 year survival rate for early-stage breast cancer are excellent, but that is not enough. What of those with stage three and stage four? What of the why’s and how’s of the sometimes rapid progression from the various stages? That is the hard work. That is where lives are lost and families destroyed. That is where the need is greatest, where research dollars could have significant impact and spur research in those areas of the greatest impact. Think of what things would be like if Komen came out and said “we are going to spend 45% of the money brought in on research…” You would be effectively tripling the amount Komen spends on research. Not only that, because Komen is one of many and it is in a leadership position, it would send a clear signal of what the priority should be.
My wife has stage four breast cancer. She found a lump in March of 2014, and within a week our families life was upended as the diagnosis went from stage two, to stage three and after MRI’s, brain scans and PET imaging settled on stage four. Since then she has had two different rounds of chemo, a single mastectomy and is getting additional hormone and bone therapy. She recently had another PET scan that showed what is likely cancer in the marrow of her bone of her arm and on T11/12 of her vertebrae where there was none before. She is 38, a wife and mother of a seven year old boy and a three year old girl. She is quite possibly the strongest person I’ve known in my life and I have been there through all of this with her. We both know the statistics and the numbers about the cancer details and the impact that her young age has on the 5 year survivorship rates. The hardest thing on her hasn’t been surgery, the treatments, giving up working to focus on treatment or the doctor appointments. It hasn’t been losing her hair, the exhaustion or the side effects of the treatments. It has been the likelihood that she might never get to see our son graduate elementary school, or high school or college. What makes the tears flow is that she will likely never see our daughter start school. That statistically, she will miss all those moments of their lives and never know her children as adults. That her and I will not grow old together. And so you see, this letter is not the ramblings of someone who does not understand the situation, but one of someone who is all too aware of the realities of what stage four cancer means. That there is no cure and that the only way out of stage four cancer is feet first. That at some day, and I pray this day never comes, that my lovely wife will join the statistics for a final time of being one of the 40,000 women in the US who die from breast cancer every year.
So again, I implore you. Change your mission. Change your focus. Change the math and the equation. Spend more, not just a little bit more, but a lot more on research. Do the hard work and lead. Empower science and medicine to find a way. Celebrate the win of education, but fight the fight that is killing people every day. Fight the fight to give people more time and not just early stage, but late stage as well. So that even if my wife dies from breast cancer that maybe out there in the world there will be someone who benefited from the change of focus. That even if she dies, that maybe someone else who got a new experimental treatment derived from research will live, and that her family/friends/husband/children will be able to hold her close and experience all the things in life that they are supposed to together.

Sincerely,

James Hawkins Caldwell III