The Center for Transparency

I’m so excited! I just received the letter stating that The Center for Transparency (EIN 46-4985004) is now recognized as a 501(c)3 public charity effective February 5, 2014!

The Center for Transparency is the official organization dedicated to providing clarity of the profits and contributions made through cause-related marketing campaigns. What started with a question about where the NFL’s “Crucial Catch” breast cancer campaign money was going has grown into an organization that will work to reward those companies who are completely open about their campaigns and exactly how much money will be contributed to their selected non-profits.

I am now working on setting up the mechanism to collect donations, but I would like to extend a heartfelt thank you to all those who have contributed to our mission. We’re on our way!

Bobbie

Seeking better ways to serve breast cancer patients

PostTVBobbie Shay was a guest on today’s On Background broadcast on the Washington Posts’ “PostTV” discussing “pink washing” and her fight to encourage corporations to be more transparent about their contributions to the causes they promote.

See the entire broadcast here.

Bobbie Shay’s segment was followed by one featuring representatives from American Cancer Society and Chronicle of Philanthropy who talked further about the NFL’s contributions, the percentage of purchases that actually goes to the charity (about 8%) and how consumers can be more informed about where their money is going.

This segment also mentions the 2012 movie, Pink Ribbon, Inc.  Watch the trailer below.

Bobbie Shay’s Story on EverydayHealth.com

ehThe editors at EverydayHealth.com contacted me a few weeks ago to write a column about my story. I know I’m not a writer, but I couldn’t pass up the opportunity to inform their 38 million readers about pink washing and where their pink dollars are (or aren’t) going.

The story was ultimately picked up by AOL and featured on their home page, driving hundreds of thousands more people to the story. I am humbled and a bit overwhelmed.

Thank you, EverydayHealth and the editors who worked their magic on my words. And a special thank you to the people who commented on the story with kind words of encouragement, insights, and their own stories.

Read ‘An NFL Cheerleader and Breast Cancer Survivor Fights ‘Pink-Washing’ on EverydayHealth.com

An NFL Cheerleader and Breast Cancer Survivor Fights ‘Pink-Washing’

 

Bobbie shay

By Bobbie Shay Lee, MSW, Special to Everyday Health

I do not share my story for empathy or pity; there are hundreds of survivor stories as relevant, unfortunate, and empowering as mine. Instead I put myself out there with the hope that you will be moved to join my fight, my journey, and my demand for accountability and transparency from corporations that sell pink products for breast cancer month.

In November of 1998, while cheerleading for the NFL at Raymond James Stadium in Tampa, Fla., I abruptly walked off the field and quit my gig in the middle of the game. It was 102 degrees that day and the constricting layers I wore — bare midriff, long white puffy sleeves — felt more like a furnace than a sassy cheering uniform.

I did not plan my exit, but after enduring months of treatment for breast cancer at the age of 25, I had no other choice. I had nothing left in me. At my initial diagnosis, I’d stubbornly refused to give up on the NFL dream, and swore I’d continue to perform as a third-year veteran on the squad. I didn’t miss a game, even though I was undergoing daily radiation therapy.

But my colleagues did not offer the support I had expected they would. The ignorance and indifference I endured, from both male and females franchise officials, isolated and astounded me.

So, on that sweltering day, leaving was all I could do to save face — and my deteriorating health. And after I put down my pom-poms, I understood my divine purpose.

bobbie shay 2

14 Surgeries in 16 Years

I’d just been through 20 months of breast cancer treatment. At that time, the Women’s Health Care and Cancer Rights Act, which requires insurance companies cover breast reconstruction, had not yet passed. Because of this, my initial request for a mastectomy with reconstruction was challenged by physicians. I finally did receive a bilateral double mastectomy in 1999, shortly after the bill passed. But unfortunately, the rounds of radiation I’d endured to treat the breast cancer had resulted in striations to the muscles of my chest, which continued to cause complications, resulting in 14 surgeries over the next 16 years.

I moved on from breast cancer and the NFL and pushed forward with my life — in a big way.

My long course of treatment inspired me to start a non-profit organization focused on the importance of breast self-examination. I earned a Master’s degree (with honors) from Florida State University, and unintentionally secured a job as one of the state’s youngest female lobbyists at the time. I spent the early years of my lobbying career working toward my dream of becoming a federal lobbyist focused on women’s health. I made it to Washington, D.C., in 2002, and became a spokesperson for a national nonprofit. At the height of the breast cancer awareness movement, requests for public speaking engagements came flooding in. And against all medical odds and scientific explanations, I also became a mom.

In Need of Breast Surgery, But Uninsured 

I left my political career to dedicate my life to motherhood and my nonprofit work, and had made a life for myself I’d always dreamed of.  But in August of 2010, while climbing a ladder at work I felt a strange pull, and found I had seriously injured my chest wall, severely damaging my reconstructed breasts.

Uninsured for years due to my pre-existing condition, I turned immediately to the breast cancer community and agencies that once relied on my fundraising efforts, public advocacy, and resources for assistance. In spite of the direct support I had provided so many years, no one offered their assistance as I struggled to find a doctor to treat me.

I was forced to pay $7,000 in cash in advance for what was described as an “urgent surgery.” The physician who took my case did not show up the morning of the operation because his office had not received the final payment before 7 a.m., the scheduled time for my surgery. Using the phone at my pre-op bedside, I arranged for my mother to immediately pay the remaining balance to the doctors’ office. We sat in silence awaiting the doctor, anesthesiologist, nurse, and surgery center manager; I held my breath in disbelief. I will never forget how I felt that day.

After the surgery, I lay in bed recovering from the repair to my torn chest wall, my pectoral muscles no longer present. I clicked through the channels on the television’s remote control. It was October, National Breast Cancer Awareness Month, and also the middle of football season. The game was showing on nearly every network, and as is typical for each October’s fundraising efforts, the All-American game looked as if it were drowning in Pepto-Bismol. People in the stands were dressed in pink, the players wore pink mouth-guards, pink cleats, pink socks, pink wristbands. The cheerleaders held pink pom-poms.

What a farce, I thought to myself. I knew the pink propaganda didn’t really aid the cause. A corporation may claim that a sizable portion of net proceeds from pink products go to benefit breast cancer research, but increasingly, it’s become more evident that this isn’t the case. A report released last week by Business Insider, found the NFL donates only 8 percent of sales to breast cancer research.

Lying in my hospital bed with limited financial resources, I still ached from those feelings of abandonment. I found myself reminiscing about my tenure with the NFL as the color pink splashed across the television screen. I had always suspected that companies used pink campaigns to promote retail sales, but for the first time ever I felt sad and exploited.

As a consumer you hold the power to make educated decisions about the brands you support. I started a petition to demand transparency about charitable donations by retail companies, as well as urge Congress to regulate pink ribbon promotion. For more information on how to join the initiative visit www.under-reconstruction.org

 

Breast cancer survivor asks for more details in fundraising

58143_152773288096397_4965487_n.jpgIn today’s Tampa Bay Times, an interview with Bobbie about the Under Reconstruction petition.

As a breast cancer survivor and activist, Bobbie Shay Lee is sometimes fed up with the amount of pink she sees. Businesses seem to bathe themselves in the color during October, which is Breast Cancer Awareness month, she said, without informing consumers of where the money goes or how much is collected. A former Tampa Bay Buccaneers cheerleader, Lee started a petition calling for more accountability and transparency from those using the symbolic pink ribbon on their products. She also asks these businesses to support not just research, but the aftermath of breast cancer treatment, including reconstruction surgery. Times reporter Shelley Rossetter talked with Lee, 41, recently about her crusade for change.

What is pink washing?

Pink washing has a couple of different meanings depending on the group you’re speaking to. In my terms, pink washing is the exploitation of the pink ribbon symbol in order to profit for retail sale.

Are people taking advantage of the pink ribbon?

I believe the use of the pink ribbon came from a sincere place, that retailers wanted to engage with women. But I’m not so naive to disregard the fact that the key retail buyer is ages 25 to 49, which is parallel to the ages of those in the breast cancer support community. I believe that is has gone beyond a sincere interest and has been exploited by companies small and large for retail profit.

What are your worries?

There are three. First, we don’t require retailers to provide specific information about the dollar amounts they are contributing or where the dollars go, which would give us the transparency we need to be informed on how to invest our money.

Second, the dollars collected for charitable contributions are often not reinvested into the nonprofit community in a decent turnaround time. Instead, companies are holding funds and collection interest before making contributions.

Third, companies will develop “pink” products in the month of October just to get on the bandwagon and not to necessarily raise awareness. It really has become a consumer rights issue.

Tell us more about your petition.

My petition is not to promote any one charity or any one product or denounce any company. My petition is to create new avenues and tools for accountability.

It specifically touches on the pink washing in the NFL. They bathe the fields and players in pink. I want to see how the dollars they are collecting are being redistributed. Is it a way to raise money and awareness for breast cancer or is it all for the marketing value, attracting women sports viewers?

In all fairness, the NFL is just the most obvious example. There are plenty of beauty products, grocery products and retail products everywhere you turn that use pink ribbons in an effort to promote their sales. All I ask is that people investigate and know where their dollars are going.

What made you start to look into this?

I encountered some latent effects of my treatment a few years ago (that included a total removal of my reconstruction.) Because of my inability to obtain health insurance I was in a position to need assistance to get the treatment I needed. The assistance was not available. There are no dollars for women who need reconstruction, especially some therapies that could mean the difference between successful remission or a more a harmful condition.

I had a suspicion that pink washing was exceeding my comfort level while watching football on Sundays. Being a survivor, it might be only my opinion and not that of the general public. I can’t deny that there are survivors who feel very empowered by participating in NFL games or breast cancer walks and I would never deny them the opportunity to do that. I just want them to be educated.

What do you want Breast Cancer Awareness month to accomplish?

It serves a very valid and important purpose in education and awareness and reducing the stigma. And I felt the impact in the lack of education and lack of understanding when I was diagnosed, especially being so young. We’ve evolved beyond that. Now it is time to look at the medical and health care environment and address the gap in services for people who need care beyond the initial breast cancer treatment.

See the story and leave your comments here.

The Embarrassingly Small Percentage Donated from Pink NFL Merchandise

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People are beginning to notice. In today’s Business Insider, Cork Gaines highlights the “shockingly small amount of money from pink NFL merchandise sales going to breast cancer research.”

He sites information obtained from the NFL to illustrate that for every $100 sold in pink merchandise, the NFL donates $11.25 to the American Cancer Society and keeps the rest.

I wonder how many people buying tickets to the pink games and buying that pink merchandise know that.

I’ve talked with several people inside, and closely affiliated with, the NFL and many of them are very disappointed with how the organization is handling breast cancer awareness month.

I’m still collecting more information and it gets more interesting, and heart breaking, as I go. Stay tuned!

See the Business Insider story, including more data on the profit breakdown here.