National Breast Cancer Coalition

Call to Action - November 2016

NBCC Holds Special Lobby Day 


Building on a summer of intense grassroots activism directed at House leadership to urge movement of H.R. 1197 to the House floor for a vote, NBCC held a special September Lobby Day. Advocates came to Washington from across the country to urge their Representatives and Senators, to take action and pass the Accelerating the End of Breast Cancer Act (AEBCA). 

Focusing on relevant committee members, advocates held over 40 meetings with members and staff.   The bill has more bipartisan support than any other health bill, with a total of 274 Representatives and 54 Senators as cosponsors.

Our efforts on Capitol Hill were reinforced by advocates holding meetings with members and staff in their home states and numerous social media postings on Facebook and Twitter.

But the work of our advocates did not end on Lobby Day. Advocates continue to keep the pressure on members to act.  The focus has now expanded to the Senate.  We must have 60 Senators cosponsoring this legislation in order to move it to the floor for a full vote.  With Congress on recess until after the election, NBCC and its advocates are pulling out all the stops in an effort to pass this important legislation. Local support, enthusiasm and activism are critical to achieving Breast Cancer Deadline 2020®

Recently Congressman Rod Blum spoke on the house floor in support of H.R. 1197 on behalf of the Iowa delegation. Congressman Blum also recognized the Beyond Pink TEAM advocates, Christine Carpenter and Lori Seawel. The speech aired live on C-SPAN; you can watch a clip of his speech here. 

In addition there were additional house floor speeches in support of H.R. 1197.  The links to these floor speeches are below:

Representative Kathy Castor https://www.c-span.org/video/?c4622297
Representative David Young   https://www.c-span.org/video/?c4622281
Representative Dave Loebsack https://www.c-span.org/video/?c4622283 

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Registration Now Open for the 2017 Advocate Leadership Summit


We are over halfway to achieving Breast Cancer Deadline 2020®, and the sense of urgency has never been greater.  We are excited to be holding our fifth annual Advocate Leadership Summit from May 20-22, 2017 to provide you with an opportunity to lead others toward a shared vision where no one else gets breast cancer—and no one dies of it.  

The Summit is filled with speakers, topics, skill building, message training and strategic planning that will energize us for the important work in the year ahead. The Summit program will focus on helping participants understand the latest scientific approaches to ending breast cancer and treatment paradigms. In addition, there will be in-depth updates from scientists and advocates on the Artemis® Projects.

On Tuesday, May 23, 2017, we will once again host a Lobby Day on Capitol Hill to be sure that Congress supports our legislative priorities. Last year advocates were successful in saving the Department of Defense Breast Cancer Research Project and they will be again promoting the importance of this program and requesting an increase in funding for this important program.

As we move further into the second half of the Breast Cancer Deadline 2020® campaign, it is vital that our leaders push even harder to make the deadline a reality. Start by registering for the 2017 Advocate Leadership Summit today.

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NBCC Advocates in Science: DNA.LAND

NBCC's partnership with NY Genome Center continues to move forward. Joy Simha, an NBCC board member who is a co-founder of Young Survival Coalition, heads up a team of LEAD graduates working with Yaniv Erlich (NY Genome Center & Columbia University) and Peter Fasching (David Geffen School of Medicine, UCLA) to develop a clinical questionnaire that will be used to enrich the genomic data reported in DNA.LAND. You will recall that the breast cancer component of DNA.LAND is a part of NBCC's Artemis Project®.  Individuals who have had their DNA tested by consumer genetics companies such as, FamilyTree DNA, 23andMe and Ancestry.com will share their DNA reports through the DNA.Land website and complete the clinical questionnaire. NBCC will work with researchers to utilize the data to determine the genomic and genetic makeup of breast cancer that will progress to metastasis.

The questionnaire is now being beta tested. If you are interested in participating once it is complete, we encourage you to have your saliva test now and stay tuned for our launch notification on where to upload the data that you receive.

Update on Incidence and Mortality Rates 

The statistics on breast cancer incidence and mortality are important to analyze for a number of reasons. For example, if mortality rates decline, we have to understand why, to see if “the why” can be extrapolated to save even more lives. A recent report gives us updated information. On October 14, 2016, the Centers for Disease Control and Prevention issued a Morbidity and Mortality Report, looking at patterns and trends in age specific black/white differences in breast cancer in the U.S. for 1999 to 2014. Historically, the incidence of breast cancer in black women has been lower than that in white woman, and mortality, higher. Analyzing incidence data from 1999 to 2013, the CDC reports that breast cancer incidence decreased among white women but increased slightly among black women, resulting in a similar average incidence by the end of the period. There are differences depending on time period and age. For example, for the period 2009-2013, incidence was higher among black women less than 60 years old, but lower in 60 or older. For that same period among white women, incidence stabilized, after decreasing in the prior five year period in which incidence in black women was stable.  Why is this important? The reasons for differences in incidence appear to be increased screening in the population for black women and decreased use of hormone therapy for white women. 

Looking at the more important issue of mortality,  the breast cancer death rate has been decreasing for both black and white women but at a faster rate for white women overall.  There are also differences depending on age.  For women less than 50 years old, deaths decreased at the same rate regardless of race. White women aged 50 or above saw larger decreases, especially among women aged 60 to 69. There the decrease was 2% per year for white women and 1% for black women. Why these discrepancies? There is no answer yet. Is it more screening? Better treatment? Lifestyle changes? Better understanding of molecular characteristics? A recent analysis published in the New England Journal of Medicine (Welch, Prorok, O’Malley and Kramer, 2016), Breast Cancer Tumor Size, Overdiagnosis, and Mammography Screening Effectiveness, observed that two thirds of the reduction in breast cancer mortality can be attributed to improved treatment. It is clear that there is still a lot of work to do to figure out if we are on the right path. Not to mention to stop all deaths from breast cancer.

 Richardson LC, Henley SJ, Miller JW, Massetti G,Thomas CC. Patterns and Trends in Age-Specific Black-White Differences in Breast Cancer Incidence and Mortality – United States, 1999 – 2014. MMWR Morb Mortal Wkly Rep 2016;65:1093-98. 

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.

Guest Letter

It may depend on how you ask the question:
Money Spent on MBC Research in 2014 is at Least 15% and Probably Exceeds 30% 
Judy Perkins
judyperkins96@yahoo.com

This post is written from the point of view of a “sciencey” gal.  If you don’t believe in science, you should skip this article and go believe whatever you want to.  However, for those of you interested in facts, read on.

First, a little about myself.  I was diagnosed with metastatic breast cancer (MBC) in August, 2013.  I quickly became interested in learning about all things breast cancer and soon found myself attending Metastatic Breast Cancer Network (MBCN) conferences and NBCC conferences.  I have served on four DOD BCRP panels and attended Project LEAD.  As a result of Project LEAD, I met Dr. Stephanie Goff, a researcher at NIH.  She was running a clinical trial at NIH using tumor-infiltrating lymphocytes to cure metastatic cancer.  I enrolled in the trial and in December 2015, I became the first breast cancer patient in the United States to receive this treatment.  I now believe that I am cancer free.

There is a movement in breast cancer to push for more focus on metastatic disease research. We want to be certain that sufficient funds are spent in that area and that the right questions are being asked.  Some make the claim that only 2% of research funding is being done on behalf of metastatic patients.  My analysis shows that this is probably an incorrect number. It may depend on how you ask the question.   Why is this important? Our resources as breast cancer advocates are limited and we must make certain they are directed to the right issues. And the appropriate enemy: breast cancer.

The two big buckets of breast cancer research money are $110M that is spent by the DOD Breast Cancer Research Program (BCRP) and $675M spent by the National Institutes of Health (NIH).  There are spreadsheets that show how that money was awarded and they are available online.  Here is the link for the BCRP:  http://cdmrp.army.mil/search.aspx

Here is the link for the NIH data:  https://report.nih.gov/categorical_spending_project_listing.aspx?FY=2015&ARRA=N&DCat=Breast%20Cancer

For the DOD BCRP, I searched for all the money awarded in fiscal year 2014 and found that the amount of money spent on MBC research was between 46-62%.  For the NIH data, I found that the money spent on MBC was between 12-28%.  I was being extremely conservative in counting whether the research was MBC.  I looked at each line item in the budget and tried to determine whether the research was for MBC or not.  I had three categories: Not MBC-related, Likely MBC-related, and Definitely MBC-related.  I used my best judgment based on the project title alone to categorize each line item in the BCRP and NIH budgets.  So, the difference in my statistics (e.g. 46-62% for the BCRP) is between definitely MBC research and probably MBC research.

The projects at BCRP have very descriptive titles making them easy to categorize as MBC-related or not.  The NIH data is much more difficult to analyze.  There are several very vague line items at NIH, like, “Project 1”, “Breast Cancer Research”, “Clinical Research”, and "Research Core”, to name a few.  I did not give any credit for MBC-related research to these line items.  I am certain that my numbers seriously under-estimate the amount of money spent on MBC research by NIH.  Therefore, I have used the higher number of 28% as my initial estimate of MBC research by NIH.

The Metastatic Breast Cancer Alliance had the same questions I do and spent some time and money researching this question.  Their analysis indicated that “MBC-focused research made up only 7% of the $15-billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom”.  Here is the link to Chapter 2 of their landscape analysis http://media.mbcalliance.org/Chapter-2.pdf.  They do acknowledge that, based on their analysis, numbers increased to around 15% in 2012. 

Marc Hurlbert who is the Chief Mission Officer of the Metastatic Breast Cancer Alliance and Chair of the Breast Cancer Research Fund explained their methods to me.    Basically, MBCA did a word search looking for keywords (breast cancer and metastasis, metastatic, metastases, metasta*, advanced or stage IV).  My review of the DoD BCRP awards revealed many projects without these keywords in the title, but clearly related to MBC.  For example, “Mechanisms of Resistance to Chemotherapies Targeting BRCA-Mutant Breast Cancer”, “Development of a Novel Separase Inhibitor, Sepin-1, for Breast Cancer Therapy”, “Novel Agents that Simultaneously Downregulate Her2, EGFR, and Her3”, are just a few examples. 

I am now working to better quantify the NIH data.  I will report back when I can firm up my numbers.  In the meantime, I’m fairly confident in my BCRP data and feel comfortable in saying that their MBC-related research exceeds 50%.  Based on my analysis, I believe that current MBC-related research spending exceeds 30% of total BC research.  This is assuming funding for MBC-related research is approximately 50% at BCRP and at least 28% at NIH. 

This article serves as an interim report.  I will continue to delve into this data and report back with my findings.  I will be working with other Project LEAD graduates as peer reviewers of my work. If we are going to fight breast cancer, we need to be armed with the facts. 

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Double Your End of Year Gift!
Make your year end gift go twice as far! Too many of us have lost women and men we love to breast cancer.  When Joyce Goldman's family wanted to honor her memory, they decided to dedicate part of the Joyce and Irving Goldman Family Foundation funds to help end this disease. The Foundation has offered to match every contribution received by NBCC before December 31, 2016―up to $100,000.  

Please click here and make your donation now before the end of the year.  Your donation will have twice the impact with the Goldman Family Foundation match.

Discover How Planned Giving Can Help End Breast Cancer
Advocates and supporters have asked how to make a greater difference.  National Breast Cancer Coalition Fund’s (NBCC) Planned Giving Program has identified ways you can make a lasting impact.

Consider an even more meaningful role in the future of NBCC by making a legacy gift. Support NBCC and Breast Cancer Deadline 2020® and meet your financial goals at the same time by making planned gifts including stock and bequests through your estate plan.

For more information email legacygifts@breastcancerdeadline2020.org or call (202) 973-0594.