Tuesday, June 14, 2011

Big Pink Says No

In loving memory of Ferne Dixon
I made a promise to someone and I told her I would do everything in my power to keep it. As a result, about a month ago, I took a trip over to the Pink Side.  I was notified that Big Pink was funding local non-profit's breast cancer programs. According to their funding guidelines, No Surrender was  a perfect fit.  I should have known. What was I thinking? I wasn't... and neither are they. They are busy concentrating on Pinking The Cure ™®©℠(patent pending).

I wrote to them because young women, particularly African American women, get diagnosed with Triple Negative Breast Cancer before the age of forty. If they wait until forty for their first screening, it can be too late, and often is. I explained what the Before Forty Initiative does and how it saves lives. I even quoted studies from their own site that African American women disproportionately  develop TNBC over Caucasian women. Here are excerpts from the request:

“...we need help with our most important program, the Before Forty Initiative. My first cancer was found at age 39 only because I had baseline screening starting at age 35. Because my cancer was TNBC, I was very lucky that it was found before it spread. However, many women who were part of No Surrender, were not so lucky. Their triple negative tumors were found too late. African American women were the majority of this group, and unfortunately, they are all gone now.

As you know, because Komen has published some of the studies, African American women disproportionately develop TNBC at a younger age. This is also true of Hispanic women and women of Ashkenazi Heritage. The current standard of screening is for women to get their first mammogram at age 40 or older. This can have deadly consequences to a young woman who has a TNBC tumor...they need to get formally screened before the age of forty...

The Before Forty Initiative is empowering, educational and ultimately, will save the lives of young, African American and other high risk women. ”

Their response?

Your project, “Before Forty Initiative” is not eligible for funding because Susan G. Komen for the Cure’s current screening guidelines are not in line with what your organization promotes.

And thus endeth the lesson.

They state on their own site that African American women get TNBC young. They say they are "fighting for us," and have raised billions of dollars for the "fight against breast cancer." But when a program as simple and pure as early screening and education about the most aggressive form of breast cancer that is attacking and killing young women asks for funding, it is denied because they believe women should not be screened until after the age of forty. Does that sound like they are fighting for you?

I ask you, my readers, fellow breast cancer warriors, friends, and supporters, the next time you sit down to write a check to the Pink, consider helping us save lives instead. We need your help and we need it now and so do the young women out there who don't even know what TNBC is and don't know that they should get checked out now, before it is too late to help them.

You see, we believe in what we promote and we promote what we believe. 100% of your donations go to helping women with breast cancer.

I made a promise to Ferne and to Lori and to Steph and to Lisa and to Vicki and to over twenty other young, beautiful women who lost their lives to TNBC because their cancer was found too late. I take my promises seriously and I will never, ever back down, I will never lose my focus and I will fight for us forever.


The Accidental Amazon said...

Oh, Gina, this really makes me want to cry. Really & truly. The one thing I've continued to be able to tell myself about Komen is that, despite their nauseating merchandising & the fact that they've squandered so much of the limelight they've garnered NOT talking about issues like Before Forty, I could at least say that they do fund local initiatives like yours.

Now I'm sitting here, and I feel ill & tearful & even more disillusioned. I don't know how much "Ppromise Me" perfume Nancy Brinker managed to sell on the Home Shopping Netword so far, but how they can square asking people to spend $59 on a bottle of perfume with refusing to fund a program that is so obviously worthwhile & very much needed, especially since the 2009 mamm guidelines came out, is beyond me.

I'll 'promise' not to gag. At least your promise still means something, Gina.

I wish you lived down the street. I feel like I need to hug you right now & have a glass of wine to get this news past the lump in my throat.

xxoo, Kathi

Anonymous said...

Dearest One,
Thank you for trying to have them fund Before Forty.They, of course, HAVE the $(watta they DO with it? All go on European Cruises?Just from the take on these constant WALKS, they could solve the national debt!)

This is really infuriating.I'm sorry you had to be infuriated.You dont deserve it.And , of course, the women you're trying to help dont deserve it.
You know how much I hate SBK, and seriously wonder why they're not put in jail for larceny, treachery, feeding off sick women!WHAT have they EVER done to HELP us, WHAT? After one of their WALKS, I met a (misguided) friend at Whole Foods.She was getting lots of prepared food---for a party for the STAFF.The contestants had been fed--you guessed it--hot dogs and chips.(And not even from WF, so laden w/bad fat and hormones.)

Again, sorry, Gina.You try so hard to take care of us.You know you are loved and appreciated for this.Bless you.

cancerfree2b said...

Oh how completely awful and sadly not so surprising given my own experiences in the past two years with Komen. Still, I am surprised. Like Accidental Amazon, I still want to feel that they do fund local programs. I know of one that they have funded in the past. And, unfortunately, the director of that local project that helps cover financial costs of breast cancer patients (for example, they even purchased a building to house about to become homeless breast cancer patients), Komen cut their funding drastically without any notice. I was also told by this director that every event she goes to to try to get money for her local organization (that provides financial assistance to bc patients in need and does so very quickly) she has to compete with the local Komen director. She told me that the Komen director competes with her for money, claims that the money is going to be divvied up among the most deserving bc projects and so therefore all money should go to Komen. It is sickening to me, just completely sickening.

I am so, so sorry that your experience fits the mold of Orange County Komen.


Pink Ribbon Blues said...

This is very strange, and it seems to run counter to Komen’s plan. I don’t agree with Komen’s plan, but still… they should at least be consistent.

I see great evidence for the shift in general screening for women over age fifty every two years as recommended by the US Preventative task force. However, even they (and other bodies as well) concede that high risk populations should have access to some kind of screening at younger ages. It’s not a one size fits all recommendation even though it is often described as one.

How is it determined that the women in the under forty initiative are at high risk for Triple Negative? That would seem to be the place to make the argument.