Why Does Accountability Matter?

We hear a great deal about accountability. We want leaders to be accountable to their constituency and other individuals to one another. In the world of breast cancer, the word gets thrown about often. But what does that actually mean? If we are to end breast cancer by January 1, 2020, all stakeholders must be held accountable for making it happen. So the system, our leaders, all individuals have to understand their role, follow an overarching agenda to do what is best to end breast cancer, play a part in achieving the goal and be transparent about what they are doing and why. At the National Breast Cancer Coalition (NBCC), we have been calling for accountability from all stakeholders long before we set a deadline to end this disease. We cannot achieve our goal without it.

Not one of our political leaders would disagree with the goal of ending breast cancer. You probably see a number of government officials -- local, state and national -- who pin pink ribbons to their lapels and show up to cut the ribbon to open the new breast care center. I have spent many hours in congressional offices across from a senator or representative who was wearing that ubiquitous breast cancer symbol as I talked about what we need the government to do to help end breast cancer. While we can assume that every member of Congress, the Administration and state and local governments wants to see an end to breast cancer, the real question is this: What are they willing to do to get there? How do we hold them accountable to their expressions of support?

We have done research to answer that question and reported the results to the public in our 2011 Progress Report, "Ending Breast Cancer: A Baseline Report." Since NBCC began in 1991, "more than 830 resolutions and bills with the words 'breast cancer' have been introduced in the US Congress. Of those, 11 resolutions were agreed to and 42 bills became law." (p. 9) Many of those new laws authorized some type of breast cancer awareness activity, like the one that authorized the illumination of the St. Louis Gateway Arch in pink during October. Let's be clear -- lighting up the St. Louis Arch with pink bulbs will never keep a single person from getting breast cancer. It's a gesture like those lapel pins. But it has no real meaning to the hard work necessary to end breast cancer.

At the same time Congress authorized the Arch lights, they did not pass NBCC's Breast Cancer and Environmental Research Act (BCERA), which would have established a grant program to launch a national strategic approach to studying the potential links between the environment and breast cancer. BCERA would have supported a new research model to ensure that public funds were spent responsibly and strategically, moving away from isolated research approaches and toward increased accountability.

More than a decade ago, NBCC advocates insisted that a federal screening program be "accountable" to thousands of uninsured women with a breast cancer diagnosis who were left to fend for themselves once their cancer was diagnosed. They conceived of and helped craft and enact the Centers for Disease Control and Prevention (CDC) Breast and Cervical Cancer Treatment Act, which expanded access to care for underserved and uninsured women. The landmark legislation was signed into law in October 2000. Being held accountable has truly mattered to thousands of women who have benefited from this kind of meaningful legislation.

And what about the billions of dollars invested in breast cancer over the past decades? Who do we hold accountable for that investment actually helping women and not just careers and the bottom line? This May, NBCC advocates held more than 400 meetings with their members of Congress on Capitol Hill. Advocates highlighted the urgency around the introduction of the Accelerating the End of Breast Cancer Act, which will leverage decades of investment to bring innovation and accumulated knowledge to a plan to end breast cancer. Within weeks of these meetings, Senator Sheldon Whitehouse (D-RI), along with Senators Grassley (R-IA), Brown (D-OH), Collins (R-ME), Shaheen (D-NH), Murkowski (R-AK), Warner (D-VA) and Heller (R-NV), introduced legislation, S. 3237, aimed at ending breast cancer. Similar legislation, H.R. 3067, was introduced in the House of Representatives last fall by Reps. Karen Bass (D-CA-33) and Rep. Charlie Bass (R-NH-2) and currently has nearly 230 bipartisan cosponsors.

When enacted, that law will focus on two areas: the primary prevention of breast cancer and preventing breast cancer metastasis, or the spread of the disease to other parts of the body, which is responsible for more than 90 percent of breast cancer deaths. When passed, the law would create the Commission to Accelerate the End of Breast Cancer comprised of several carefully selected representatives of biomedical research, business, breast cancer advocacy and other disciplines who have demonstrated an ability to be innovative, creative and strategic. The bills include a sunset date and are designed to make certain the Commission does not become another bureaucracy. Members of this Commission would be held accountable for their work. We are holding Congress accountable for theirs.

When we launched Breast Cancer Deadline 2020® almost two years ago, we took inventory of breast cancer research, treatment, prevention and policy, along with the advocacy world. We were faced with the reality that in 20 years, there had been very little progress. It is time to hold everyone -- and ourselves -- accountable.