Pink…for One Heck of a Price Tag

By Laura Edwards

Each October, the NFL celebrates Breast Cancer Awareness Month by going pink. Pink ribbons adorn the footballs and fields. Players wear pink chin straps, arm bands, towels, helmet stickers, gloves and cleats. Coaches wear pink hats. Referees blow pink whistles. Captains wear pink patches. Kickers boot field goals through goalposts mounted on pink bases.

Breast cancer is a terrible disease. Stage IV breast cancer’s five-year survival rate is just 15 percent. I hate any disease that steals people’s lives before they’re done with this thing we call living. Disclaimer: I’ve never lost anyone I love to breast cancer – though I’ve lost people I love to brain disease, heart disease and other equally horrendous things. But still, I hate breast cancer. One of my best friends lost her mother and older sister to breast cancer. I don’t have my own battle scars from breast cancer, but I’ve met it before. I know its name.

And yet, every year when October rolls around, I reevaluate this whole NFL pink initiative, and every year, I come to the same conclusion: I find it to be an incredible waste of money. Peter O’Reilly, the league’s vice president of fan strategy and marketing, says the NFL spent about $5 million on advertising and gear for the initiative JUST THIS YEAR.

Do you know what the rare disease community could do with $5 million?

If I could write a $5 million check to the world’s best Batten disease experts, I believe in my heart that they’d give us a treatment that works.

It probably wouldn’t be in time for my sister. But we might have a chance to save the children who aren’t as affected…children whose families sit where we sat six years ago. Weighed down by tragedy. Lifted up by hope for the future. For the possibility that Taylor could be different…that she could survive. We could rewrite the futures of the children who have yet to be born. We could change the face of Batten disease – an indiscriminate killer. Its survival rate is zero percent.

I repeat: breast cancer is a terrible disease, and while not nearly as common as some diseases, such as heart disease, it affects far more people than Batten disease. I’m not proposing that we stop supporting breast cancer research in favor of Batten disease research. Not one bit.

But if the NFL has $5 million to support a disease, why spend it on cleats? No matter what disease you’re fighting, awareness is incredibly important; just ask my family and friends or the Taylor’s Tale board of directors how much I push our awareness efforts. But at the end of the day, you don’t save lives with taglines and pink chin straps. You save them with smart research and strong advocacy efforts and strategic awareness tactics that rely on the strength and the magic of a great story.

That’s where I think the NFL misses the point. The league could still have an incredible impact by spray painting pink ribbons on fields, putting pink ribbon patches on jerseys, giving coaches and staff pink ribbons to pin on their shirts, and asking the broadcast team members to don pink threads – all for very little green. They could even air short interviews with NFL players and staff who are directly affected by breast cancer. Carolina Panthers running back DeAngelo Williams is a vocal supporter; his mother is a survivor, and he lost four aunts to the disease. A heartfelt message from a football star about the importance of getting a mammogram would mean something to fans.

The rest is just expensive noise. How many of the millions watching NFL football today have forgotten – or never seen – the true faces of breast cancer? The women – and yes – men – who fight courageous battles against the disease each and every day? That’s the stuff of legend – the stuff that will resonate with people – long after the players, coaches and refs resume wearing color-coordinated gear and the pink ribbons disappear. How many people never meet the stars of the story or learn a single thing about breast cancer risk factors but can proudly tell you that breast cancer’s signature color is ‘pink?’

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7 Comments On “Pink…for One Heck of a Price Tag

  1. margie frazier Reply

    amen, Laura…$5M could make or break many studies in the pipeline that could find treatment for our kids and adults…and possibly new science to cure other rare diseases. thanks for the post. and all you do. Hi to Taylor.

    1. Member Laura King Edwards Reply

      Thanks for reading and for all that you do, Margie! I have great faith in our experts; we just need to empower them to do their work AND provide solutions to the roadblocks that currently prevent innovation in labs from becoming treatments in clinics.

  2. Peggy D Reply

    Laura – so true what you have written. Even 1/4 of what they spend would be a blessing to research. I often think it’s easier for folks to latch on to the popular causes because it’s less work on their part. Awareness for breast cancer is easy. Show all the pink and no explanation is needed for the message they convey. A rare disease like Batten would take too much explanation and effort – just my opinion. Thanks for all you do for awareness. 🙂

    1. Member Laura King Edwards Reply

      Thanks so much for sharing your thoughts, Peggy. I completely agree – while many people certainly promote the fight against breast cancer (and other popular causes) because it has touched them personally, many others get involved simply because it is easy – or even cool – to hop on the bandwagon. Again, I think the fight against breast cancer and other more common diseases is incredibly important – I just wish that at the end of the day, the rare disease community didn’t have to fight for leftover scraps. Thanks for reading!

  3. Katie Thames Reply

    Laura,
    Your post was so eye opening for me! I had no idea how much just one major sport was spending towards Breast Cancer Awareness. I completely understand and agree with your point.
    That amount of money could be helping so many Rare Diseases that go under the radar when it comes to awareness & funding. A lot to think about for anyone effected by or dealing with a Rare Disease. Thanks for shedding light on this. You are doing an amazing job spreading awareness with Taylor’s Tale!

    1. Member Laura King Edwards Reply

      I appreciate your feedback, Katie! I want to stress, too, that those millions could help not just rare disease patients like Taylor, but breast cancer patients as well. A lot of the money raised for breast cancer never goes to the efforts that are really to thank for saving lives (i.e. medicine and research). And breast cancer awareness, just like awareness for Batten disease and other rare diseases, is incredibly important. After all, the breast cancer survival rate wouldn’t be what it is today if not for the tireless efforts of people like Nancy Goodman Brinker, who founded the Komen Foundation in honor of her late sister, Susan, or the color pink, which helped make fighting breast cancer “cool.” I just believe that we could accomplish the same goals and have the same impact for far less money – and redirect a lot of those dollars toward efforts that can actually save lives.

      Thanks for reading!

  4. Scoggin Jones Reply

    I’m with you Laura. So many fundraisers for “popular”, well-publicized causes, and too few for other diseases that are rarely heard of, yet impact people and families just as much. Thank you and all who support Batten’s disease research.

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