Heading to Washington! NBCC's Advocacy Training Conference

This weekend breast cancer advocates, activists, researchers, educators, policy-makers, and other concerned citizens will be making their way to Washington DC to learn, connect, and transform at the National Breast Cancer Coalition’s Annual Advocacy Training Conference. This will be the 19th year that NBCC has hosted the conference, always with the goal of bringing together a diversity of people, ideas, and agendas to further the ultimate goal of eradicating breast cancer.

The issues and actions have changed over the years to address the specific needs, but this year brings a new era of breast cancer advocacy. The NBCC represents a part of the breast cancer movement that is willing to take a reflexive stance about its activities; to discern what works, what doesn’t, and what needs to change. Such introspection is not easy especially for large organizations. Still, NBCC with hundreds of diverse member organizations is attempting to do just that.

NBCC president Fran Visco recently made the point on Huffington Post that the eradication of breast cancer requires us to remember where we’ve been, envision where we need to go, and map out what it will take to get there. She said,

What have we accomplished in 20 years? We brought about more money for breast cancer research than any other organization — more than $2.5 billion — through our advocacy that created and maintained the DOD Breast Cancer Research Program. We took on the issue of government funding for screening but not treatment of underserved women. That advocacy led to the creation of a system of access to health care for thousands of uninsured women through our design and successful enactment of the CDC Breast and Cervical Cancer Treatment Act. We made certain we could oversee how research dollars were spent by creating innovative science-based training programs for lay advocates. We collaborated with scientists to change the way breast cancer research is done through the development of new models of research, through our work on innovative clinical trials and our push for meaningful results. We made breast cancer an issue of national significance through our informed advocacy on Capitol Hill and in state legislatures.

We should all be very proud of our accomplishments. And frustrated. Despite the billions of dollars for research and care and thousands of advocates pushing for meaningful progress, things have not changed all that much.

Frustrated. That’s one word to describe it. I’d add: disheartened, infuriated, confused, and disgusted. Billions of dollars. Screenings and medical interventions. An abundance of awareness activities. A plethora of good will. More pink than anyone would ever know what to do with. And things haven’t changed all that much? How can this be?

Last September (2010) the NBCC released a white paper to explain where progress to eradicate breast cancer has lagged behind and what got in the way. Drawing together statistics and information from widely respected sources, the paper specifies that incidence rates continue to rise; advances in treatment are incremental at best; and, although our understanding of breast cancer has increased in the past forty years, little has changed for many of the diagnosed. In addition, what has changed can sometimes be more harmful than beneficial. 1 The NBCC white paper accompanied a new plan of action to end breast cancer in ten years – Breast Cancer Deadline 2020®. According to the executive summary, this does not mean that breast cancer won’t exist in January 2020 but that we’ll be much farther along in knowing how to prevent the disease and how to reduce mortality.

A key component of NBCC’s plan to change breast cancer related outcomes is to change the conversation surrounding the disease. To date much of that conversation has focused on campaigns to “raise awareness,” expand screening programs, increase fundraising for the cause, and conduct treatment-related research. Thirty years ago this conversation was necessary. But it’s efficacy has leveled off. People know about breast cancer. Screening programs have been routinely adopted and there are numerous programs to provide it despite the limitations of the technology. More than 1400 organizations are dedicated to the cause of breast cancer, and billions are raised every year. Yet deaths hover around 40,000 per year. Still. Stage IV metastasis is the leading cause of death for that group. Still. And if we remain stuck in this conversation, breast cancer incidence rates will continue to rise, recurrences will remain at around 30%, and the mortality rate will hold steady just where it is. If we hold onto the same conversation we’ve been having for the past 25 years, the dream of eradication will remain a dream.

To accomplish the 2020 mission NBCC will need to galvanize widespread support across diverse constituencies. Despite the ubiquity of pink campaigns and a seeming desire to keep the conversation from shifting at all, NBCC is not alone in questioning the current state of affairs. Individuals and organizations in public health and across the breast cancer advocacy community have raised questions about breast cancer research and advocacy, the strategies used, and the limitations of the ongoing war. 2 To create a strong coalition for change, NBCC will need to stay reflexive in its approach, open to modification when needed, responsive to constituent groups, and focused on valid indicators and actionable goals.

I believe the organization can do this. The strategic plan has built-in processes for systematic and continuous evaluation.

I believe the organization is well-positioned to do this. NBCC has a strong track record of using evidence to develop policy, and policy to drive change.

I believe it’s time for a change. You’ll find me at the Annual conference with a panel of people focusing on how to change the conversation through social media.

Blogging, Tweeting and Being Linked In (Monday, May 2, 2:15pm – 3:45pm)

Whether you’re blogging, tweeting or updating your status on Facebook, being linked in helps affect change—as long as the message is on target. Social media is a catalyzing tool for all ages and “techKnowledgy” levels that helps change the conversation. Be part of the shifting conversation online about breast cancer and help us spread the word—breast cancer ends January 1, 2020.

Moderator: Courtney Bugler, The Young Survival Coalition.

Speakers: Geoff Livingston, Zoetica; Alan Rosenblatt, MA, PhD, Center for American Progress; Gayle Sulik, PhD, University of Albany.

I’ll offer my reports following the conference. In the meantime, check out the program. And if you’re attending the conference, be sure to come by and say hello!

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6 comments to Heading to Washington! NBCC’s Advocacy Training Conference

  • Gayle, It is frustrating indeed to realize things have not changed all that much, at least not the things that really matter. I’m thankful organizations like NBCC exist. I’m also grateful to those like you attending this conference. It’s going to take the passion, energy and determination of many to keep the shift in conversation leaning in the right direction. Thanks for attending and I look forward to hearing ideas generated about HOW to keep the change in conversation going.

  • Thank you, Nancy! Energizing the conversation wherever we are is the most important thing. Stay tuned, and thanks for sending your passion through the airwaves. Hope to meet you at some point.

  • Because this conference does exist, because a new conversation is beginning, so the real fight is on the way! I’d like so much being with y’all… thanks to your writing, you’ll share this great moment.
    I’ve the feeling that a part of my BC friends is together in Washington dc 😉 Hi y’all sistahs!

  • It’s been a wonderful gathering. So much energy, and I do believe the bloggers (and many are represented here) will be taking up the slack left by the steep decline in science journalism. We’ve got some major work to do, but I can tell you… we’re up for it. Wish you were here!

  • Mary

    “We should all be very proud of our accomplishments. And frustrated. Despite the billions of dollars for research and care and thousands of advocates pushing for meaningful progress, things have not changed all that much.” This is a very sad admission. I condone the efforts of the NBCC to revise the mentality of “pink” and make it a true force for change. May we truly make a difference, in a meaningful way.

  • Change is in the air, in the streets, and in our futures!

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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