National Breast Cancer Coalition

Call to Action August 2017

Tell Your Senators to Save the DOD BCRP!

Senator McCain introduced S. 1519, the National Defense Authorization Act for FY 2018—and again he has included several provisions that are problematic for the Department of Defense Breast Cancer Research Program (DOD BCRP) and all Congressionally Directed Medical Research Programs (CDMRPs).

Senators Dick Durbin (D-IL) and Roy Blunt (R-MO), have introduced this amendment, the Durbin-Blunt NDAA Medical Research Amendment #592, to repeal the problematic language.

Our grassroots network is doing an outstanding job gaining cosponsors in support of the Durbin-Blunt NDAA Medical Research Amendment #592. A total of 39 Senators have cosponsored to date. But there is more work to do and now that the Senate is in recess through August, we need your state/local activism!

Action Needed: Throughout this recess, we need you to contact your Senators and, if they have not yet done so, ask that they cosponsor Amendment #592 and to support the Amendment when it comes to the floor for a vote. 

2017 Advocate Leadership Summit & Lobby Day

An energized, committed and passionate group of NBCC leaders came together for our 2017 Advocate Leadership Summit on May 20 – May 23, 2017. Held at the Renaissance Capital View Hotel in Arlington, VA., the summit was praised as “the best ever” by participants.

This year’s preconference program began with a Project LEAD® Workshop “Investigating the Etiology of Breast Cancer Metastasis Through Genetic and Genomic Screens.” The Summit featured fascinating plenary sessions on immunology and primary prevention of breast cancer, as well as sessions about understanding and stopping metastasis. Attendees had the opportunity to hear about our new project DNA.Land, and the Metastatic Breast Cancer Project, explaining how your genome can help find answers to end breast cancer. A luncheon arm chair discussion on DCIS, and an in depth  discussion on various approaches to healthcare reform rounded out the plenary sessions.There were 8 workshops that included an overview of research into brain metastasis, an overview of Department of Defense BCRP, a tutorial on scientific peer review, social media, and research advocacy and a deeper look at Congress’ role in ending breast cancer.

The plenary sessions and research advocacy workshop are available to view at the NBCC Online Center for Advocacy Training, 2017 Advocate Leadership Summit page.

LOBBY DAY 

Each year, NBCC's Annual Lobby Day in Washington, DC becomes more impactful as hundreds of breast cancer activists walk the halls of Congress with a shared sense of urgency and unity of purpose as they advocate to their Congressional Members for an end to breast cancer. NBCC mobilizes its grassroots to spend an entire day in May on Capitol Hill participating in hundreds of meetings with Members of Congress and their staff. Activists from nearly every state present, discuss and encourage their Senators and Representatives to support and become advocates for NBCC’s legislative and public policy agenda. International participants accompany delegations to study and observe our democracy in action through NBCC's brand of advocacy.

The 2017 Annual Lobby Day once again was a great success! Advocates met with their state Senators and Representatives in an effort to advance NBCC's 2017 legislative and public policy agenda. Activists representing nearly every state, District of Columbia, and Puerto Rico spent an entire day on Capitol Hill conducting and participating in more than 200 meetings. Lobby Day was inspiring and an important day in making significant progress with Members of Congress; one of the most powerful and effective ways to advocate for an end to breast cancer and resulted in significant increases in supporters for our #1 legislative priority: $150 Million for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2018.

We have many great pictures that capture the Summit experience! Please be sure to follow our Facebook page, share the photos and tag fellow advocates. 

Mark your calendar for the 2018 Advocate Leadership Summit at the Renaissance Capital View Hotel in Arlington, VA on Saturday, April 28 – Tuesday, May 1, 2018 (Lobby Day).

#NBCCxACA

What should we do about health care?

Preserving access to affordable and quality healthcare for women and men with, and at risk of, breast cancer has long been one of NBCC’s top priorities. For now, let’s focus on insurance.  NBCC advocates worked hard to stop Congress from repealing the Affordable Care Act. NBCC advocates participated in demonstrations and sit ins and voiced opposition to efforts to repeal.  Our message was: oppose any bill that will increase the number of uninsured, decrease protections for people with pre-existing conditions and cut Medicaid.

Now we need to fix the ACA to make certain that it is stabilized, that individuals can afford premiums, and that the volatility that was imposed in part by political positioning goes away. We understand that Senators Lamar Alexander and Patty Murray plan to hold a bipartisan hearing on these issues and we look forward to meaningful efforts to shore up the law.

NBCC would like to see a bipartisan bill that becomes law and one that:

  • Guarantees continued payments for ACA subsidies that reduce enrollees’ cost sharing.  The uncertainty created by the White House must be resolved so that premiums can be lowered. 
  • Follows the model of Alaska and Maine and reimburses insurers for high cost enrollees who need more expensive treatments. This type of reinsurance lowered premium increases from 40 to less than 10 percent in Alaska and by 20 percent in Maine.
  • Ensures access to insurance plans in markets where there is one or no insurer, such as in rural areas. There are several possibilities that could address this situation.

Contact your Senators and Representative and tell them the time for bipartisan action is now. Lives truly do depend on it.

This fight is far from over. NBCC urges all advocates if you are not yet signed up for our National Action Network, please sign up here so you can receive important action alerts. Now, more than ever, we need to make our voices heard. 

Read stories from women and men with breast cancer who have been impacted by the Affordable Care Act. If you have a story you’d like to share, or if you’re involved in ACA related events and you want to share photos or video from events, please send an email to myacastory@breastcancerdeadline.org or upload your video here.

Project LEAD®

It takes a certain kind of advocate, one who is passionate, committed and intellectually curious about science as well as one who is willing to challenge business as usual, to participate in NBCC’s renowned Project LEAD® program. NBCC’s trained research advocates are respected and recognized as the best educated and most effective advocates by many stakeholders in the research arena. They receive their most intensive training at the Project LEAD® Institute, a key component of NBCC's Center for Advocacy Training. Project LEAD® provides breast cancer advocates with the education and training they need to understand complex medical information, the nuances of research methodology and the unique role advocates play in influencing the research agenda.

Last month, 41 advocates gathered in La Jolla, CA, for a week of intense, dedicated study. The diverse class of 2017 included participants from 14 different states, Puerto Rico and Spain. They delved into complicated homework assignments and completed rigorous coursework on topics such as genetics, epidemiology, immunology, and study design, taught by expert faculty.  

Graduates of the demanding program will play a critical role in programs such as the Department of Defense Breast Cancer Research Program, NBCC’s Artemis Project®, clinical trials and local research programs around the country and the world. They help ensure that advocates have a credible voice anywhere decisions about breast cancer research are being made. They are better able to translate complex science and medical information to their communities.

2018 Project LEAD® Institute will be held June 22-27, 2018

NBCC continued to pilot test a new training curriculum, Advanced Project LEAD®. Building on the success of last year’s program, selected advocates engaged in three months of researching a topic in depth, developed a proposal and presented it to advocates and scientists.  This advanced program further trains advocates who have a deep interest in and propensity for taking leadership roles in breast cancer research advocacy as NBCC representatives.

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Science Spotlight2

Breast Cancer: Is Size or Biology More Important?

After decades of analyses of various studies looking at early detection in breast cancer, one thing we should all be able to agree on is this: If there is a benefit to early detection, it is not that significant. And whatever benefit there is comes with risks.

As we learn more about the biology of breast cancer and as technology improves, we should increase our critical analysis of detection and look very carefully at long-held assumptions. Recently, researchers at Yale University looked at invasive breast cancers diagnosed from 2001-2013 in the SEER database to see if they could determine what features of different groups of tumors are likely to become overdiagnosed and to identify the mechanism that led to overdiagnosis.  As their study confirmed, small breast cancers do not always progress to large ones within a woman’s natural life time.  In fact, with mammography, the rate at which we find small breast cancers has increased three times more than large cancers have decreased.1 But does any of that matter?  Is the size of a breast cancer still relevant, or is it the molecular makeup of that cancer that tells us whether it will progress and become lethal? Should we continue to try to find breast cancer earlier and earlier, or will we be doing more harm than good? Because if we mostly find breast cancers that will never progress within a woman’s lifetime, then we are overdiagnosing significant numbers of women and unnecessarily intervening with toxic treatments.

In the study at hand, the authors, Lannin and Wang, divided the invasive breast cancers into three groups to try to predict health outcomes (favorable, intermediate, and unfavorable).  The three groups were separated based on known biologic factors: grade, estrogen-receptor (ER) status, and progesterone-receptor (PR) status. They also looked at how tumor size and biologic factors relate to breast cancer-specific survival, cell/tissue features, and the spread of cancer to lymph-nodes and distant locations. 2

The authors also analyzed the group by age. For women under 40 and those above, there was a larger percentage with breast cancers having favorable biologic features and smaller sized tumors (1 cm or less) compared with those with larger tumors (> 5 cm). Larger tumor size had a greater percent of patients with unfavorable biologic features. Regardless of the size of the tumor, favorable biologic features were linked to better survival.  Even large tumors with favorable biologic features showed better survival and outcomes compared with small tumors with unfavorable biologic features.

An important concept that plays a role in this analysis is “lead time bias” and the related “mean lead time." In this context, the “mean lead time” is the length of time between when a breast cancer is detected by mammography screening and when it could be clinically detected without screening.  Lead time bias results from the fact that early detection leads to a longer time between diagnosis and death, but there may be no actual effect on the natural history of the disease. Yet it may appear that early detection resulted in longer survival.  The reality is often that a woman would die the same day whether her breast cancer was detected one year or ten years previously. This is just moving up the time of diagnosis without affecting the outcome. The Lannin and Wang study showed that lead times between the favorable and unfavorable groups were extremely different. Favorable tumors, determined by biology, showed lead times about 20 or more years greater than unfavorable tumors.

The authors looked at different models to determine the percent of overdiagnosis according to age and biologic features. One clearly showed that overdiagnosis is less common in younger women and increases steadily with age based on the larger distribution of favorable biologic features in older women. This makes sense since women under 40 are not routinely screened for breast cancer and thus there is a much lower number of favorable tumors found in that age group. Overdiagnosis was estimated to be as much as 50% in the favorable group, regardless of age.

Making women and their doctors aware that some cancers will never become lethal or that early detection often simply lengthens the time a woman is a patient without real benefit, can help direct future research, challenge assumptions about screening, help women make better decisions and limit toxic therapies.

  1. Welch HG, Prorok PC, O’Malley AJ, Kramer BS. Breast-cancer tumor size, overdiagnosis, and mammography screening effectiveness. N Engl J Med 2016;375:1438-47.
  2. Lannin DR and Wang S. Are Small Breast Cancers Good because They Are Small or Small because They Are Good? N Engl J Med 2017;376(23):2286-91.

other news

DNA.Land

There is something you can do now to help end breast cancer. Have you had a genealogy test, from 23 and Me or Ancestry.com or the like? We need you. NBCC has partnered with the New York Genome Center to develop a large scale resource to study breast cancer. This project asks women and men who have participated in genealogy tests to upload their data and answer questions about breast cancer, including their family history. These genomic data, along with answers from the breast cancer questionnaire, developed by NBCC trained advocates, will be used to develop a resource that researchers can use to identify genetic variants that impact risk and recurrence of the disease. 

Remember: If you have had your DNA sequenced through a DTC genomic company such as 23andMe, Ancestry DNA, or FamilyTreeDNA, you can be part of this project. Please visit DNA.Land for more information. 

If you have not yet had your DNA sequenced, there are easy to follow instructions on how to obtain genomics information from the three most popular DTC websites on DNA.Land.

For more information or to ask questions, please email nbccdnaland@breastcancerdeadline2020.org.