Research Brief -- NBCC's Misguided Cancer Goal or Savvy Strategy?

NBCC-Deadline

In November 2012, an editorial in the international science journal Nature, “Misguided Cancer Goal,” argued that the influential advocacy group, the National Breast Cancer Coalition, was making false promises. In particular, the essay stated that NBCC’s 2020 Deadline campaign was promising something science could not yet deliver.

As background, National Breast Cancer Coalition has, since its founding in 1991, organized its activities around three major goals. These involved promoting research into the causes of breast cancer and the most optimal preventive and treatment interventions; improving access to quality care through legislation and changes in health care delivery systems; and increasing the informed involvement and influence of health activists and those living with breast cancer. Though these goals were consistent over the years and gains achieved, the group set a deadline a few years ago to end breast cancer by Jan. 1, 2020.

The 2020 Deadline (PDF) marked a major change in public discourse about whether the dream of eradicating breast cancer was really possible based on existing evidence. The answer, as the NBCC outlined in a White Paper, was an unequivocal no. A new strategy was long overdue if ending the disease were to move into the realm of possibility. Setting 2020 as a ten-year goal was a plea to change how society thinks and talks about breast cancer, to focus research, and to measure success with valid, evidence-based indicators.

In addition to working with the new Congress, securing federal funding, and engaging the grassroots, NBCC set the Deadline as a way to bring together researchers, scientists, advocates and other stakeholders for strategic summits centered on a primary areas of focus: (1) how to stop deadly breast cancer metastasis; and (2) how to prevent the disease from developing in the first place. NBCC argued strongly that without serious change in “business as usual” another ten years would roll around in the blink of an eye, and the breast cancer epidemic would continue right along with it.

While some advocacy groups disagreed with the language in particular (since “cure” rhetoric abounds in the breast cancer world), others were willing to suspend disbelief. NBCC had a track record of getting things done and making serious changes in the breast cancer landscape including public policy, patient advocacy, and evidence-based medicine. Since the public discussion was already two years out, the editorial’s concerns about the Deadline as a form of wishful thinking was anachronistic. “Hope,” it argued, “is not a good strategy, in life or in disease research. So the setting of goals, and the drive to reach them, is to be commended, and cancer is no exception… [But] the deadline for ‘ending’ breast cancer that former US President Bill Clinton also endorsed is like other ‘beat cancer’ deadlines, potentially harmful to the public trust that underpins the research enterprise and the patients who cling to hope, whatever its validity.” This late to the 2020 Deadline discussion, it appears that Clinton’s endorsement of the campaign triggered the editorial comment. What is it, after all, that the public ought to trust?

NBCC wrote a response to the editorial calling the 2020 Deadline a “calculated risk” to achieve a goal: knowing how to prevent breast cancer and how to prevent deaths from it. Fran Visco acknowledged that the group did not know if they could achieve the deadline and end breast cancer, but that they were working with many scientists to try. “We understand that fear of failure can be paralyzing” she said, “and the safest route is to continue along the path you are comfortable with. That, however, is not in the best interest of women. That guarantees we will simply continue to lose more and more lives, while science plods along.” The desire to change “conventional, conservative approaches to breast cancer” is clearly the inherent role of the Deadline, not to further some vision of cockeyed optimism that breast cancer will magically disappear by January 1, 2020.

Paul Goldberg, editor of The Cancer Letter, interviewed Visco in January 2013 to probe the issue further. He asked for details about NBCC’s response to the Nature Editorial, whether the Deadline was really an empty promise, who is working with NBCC on the goal including the scientists involved, the role of funding to achieve complicated goals, the bad karma of unmet deadlines, the reasons for choosing the year 2020 rather than some other arbitrary year, and the backlash the group has received. Visco’s responses were well articulated, and she told Goldberg where he could find more details about NBCC’s progress in the campaign such as the Artemis Project (PDF) that is searching for a virus or antigen target or targets. Visco also stated:

“I don’t know if we can end breast cancer by 2020 or 2030—we’ve never tried to do that…There are so many access issues and so many difficult issues that need to be addressed…No single institution or single agency or single individual can make a promise…We are leading a campaign and we are collaborating with scientists and leaders at every level to achieve that deadline…[In the] group of scientists that do not believe that it is possible, some of them are helping us identify what the barriers are that they see, and what the strategies are that we can use to overcome those barriers.

When we looked at the world of breast cancer, we truly did ask the question: Alright, it’s 20 years later, and the National Breast Cancer Coalition brought about incredible change—the Department of Defense program, an incredible amount of money for scientists, trained and educated advocates, collaborations, changes in clinical trials, expanding access to care—all of these things we have done, but the numbers, the statistics, they are not changing. Not in any way that is commensurate with the amount of investment in this issue and the years of focus on it. And breast cancer is becoming a bigger and bigger business, with a bigger and bigger infrastructure, and I think a lot of the really important stuff is getting lost.

If a conversation stops focusing on the next grant, and it stops focusing on screening and expanding mammograms for women around the world, and it really focuses on how we can end this disease, how we can stop women from dying, then that’s an incredible contribution that we’ve made in the short term.”

 Read the full Cancer Letter interview »

Is NBCC misguided for setting a deadline to uncover some of the mysteries related to preventing breast cancer understanding how to keep people from dying from the disease? Not if the strategy includes actionable goals, valid indicators of progress, systematic and continuous evaluation, and flexibility to change course when needed. Without these elements, the Deadline will be just like any other of the regularly floated ‘beat cancer’ deadlines, as the Nature editorial suggests. With these elements, however, NBCC’s efforts might have a chance of making a real difference in breast cancer regardless of whether the disease ends in 2020.

Source: 2012. ”Misguided Cancer Goal,” Nature [Nov;491:637].

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