National Breast Cancer Coalition

Call To Action Online

August 2016

There is no summer lull at the National Breast Cancer Coalition. NBCC went from its May Annual Leadership Summit and Lobby Day, to intense advocacy in June on Capitol Hill to save the DoD Breast Cancer Research Program, (see July 2016 Call to Action), to training a new group of research advocates in July through Project LEAD®, to an August strategy to push for enactment of the Accelerating the End of Breast Cancer Act. In between these activities, NBCC pilot tested a new science education program for advanced Project LEAD® advocates, continued to hold conference call meetings on Artemis Project® seed grants and follow up on recommendations from the Annual Meeting, analyzed research news for its members and launched new research advocate projects to complement ongoing Artemis work. NBCC also participated in the Cancer Moonshot Summit, and was part of a roundtable of patient groups that met with Vice President Biden and Dr. Jill Biden.

And in the news....NBCC participated in a press conference to highlight the importance of the DoD Breast Cancer Research Program held on Capitol Hill. Wanda Lucas, representing NBCC, spoke in support of all the DoD peer reviewed health programs. The video of Wanda’s remarks can be found here.

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LEGISLATIVE UPDATE 

ACT NOW: AEBCA Strategy for Grassroots Action during Recess

Congress is in recess through Labor Day, but NBCC’s outstanding advocates are working around the clock to keep H.R. 1197/ S. 746, the Accelerating the End of Breast Cancer Act, visible to Members of the House and Senate. But time is running out! We must build on the urgency we recognize by targeting Michigan Representative and Energy and Commerce (E&C) Committee Chairman Fred Upton with multiple actions through this extended recess. Read more here.

In addition, House Majority Leader Kevin McCarthy has the power to bring this bill to a vote. We are asking our grassroots network to urge him to move H.R. 1197, the Accelerating the End of Breast Cancer Act, (AEBCA) to the floor of the House of Representatives for a vote now.

Send a message to Majority Leader McCarthy urging him to move AEBCA to the floor by clicking on this link

As part of NBCC’s AEBCA grassroots strategy, we urge everyone to continue submitting letters to the editor to their local newspaper. Links to some of the letters which have appeared in various papers throughout the country can be found here.

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Project LEAD® Institute Graduates a New Class of Research Advocates

NBCC’s trained research advocates are known as the best educated and most effective advocates by many stakeholders in the research arena. They receive their most intensive education at the Project LEAD® Institute, part of NBCC's Center for Advocacy Training and its stable of science and public policy programs. At the July Institute, 40 graduates completed the program. Nearly 2,500 advocates have been trained through Project LEAD® since it's inception in 1995. Project LEAD® provides breast cancer advocates with the information and tools they need to collaborate with scientists, understand complex scientific and medical information, the nuances of research methodology and the unique role advocates play in influencing the research agenda. 

Graduates of the rigorous 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 in research institutions around the country and the world. They help ensure that the public is well informed about the reality of breast cancer and have a credible voice anywhere decisions about breast cancer are being made.

This year we also pilot tested a new training curriculum, Advanced Project LEAD®. This advanced program is meant to further train 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 SPOTLIGHT 

Dr. Susan Love Breast Cancer Foundation’s Metastatic Breast Cancer Collateral Damage Project

Dr. Susan Love Research Foundation is asking for your help with a questionnaire that is part of its Metastatic Breast Cancer Collateral Damage Project. If you have metastatic breast cancer, devote 30 to 45 minutes to completing a Health of Women (HOW) Study™ questionnaire to make a difference for people living with metastatic disease. Learn more and complete survey here.

Young Women's Breast Cancer, a New Analysis by Tracy LeDuc

Advocates and researchers have known for a number of years that women newly diagnosed with breast cancer under the age 40 tend to have a higher five-year mortality rate than older women. Most advocates and researchers assumed this higher mortality rate was due to the higher incidence of more aggressive subtypes of the disease—namely triple negative and HER2+ breast cancer—in younger women. These subtypes tend to recur more frequently in the first five years after diagnosis than the ER+ subtypes.

However, a new study has provided some evidence that this may not be the case and that young age is a prognostic factor in certain breast cancer subtypes, but not others. In a recent article, Subtype-Dependent Relationship Between Young Age at Diagnosis and Breast Cancer Survival (JCO Aug. 1, 2016), Dr. Ann Partridge reported the results of an analysis of data from the NCCN Breast Cancer Outcomes Data Project, from over 17,000 women diagnosed with breast cancer between 2000 and 2007, of whom 1,916 were 40 years of age or under at diagnosis. The study reported that these younger women diagnosed with triple negative breast cancer have a five-year mortality rate only slightly higher than women diagnosed with this subtype at an older age and that there was no difference in HER2+. What is surprising, however, is that the data showed that younger women diagnosed with ER+ disease have a worse five-year mortality rate than their older counterparts (age 51-60) and the risk is highest in the Luminal A subtype.

Thus, while the incidence of these generally less aggressive ER+ subtypes tends to be lower in younger women, the mortality rate is higher.

Dr. Partridge proffered several theories to explain these results, including the fact that many of the younger women diagnosed at the start of the study period were not offered endocrine therapy, that studies have shown that there is higher non adherence with endocrine therapy by younger women despite its known benefits, and that there may be as yet unidentified differences in the biology of either the disease itself, the younger host, or both. One issue not addressed in the article is what role—if any—the relatively limited follow-up time might play in the interpretation of these results. Median follow-up in ER+ patients was 6.45 years even though the study analyzed women diagnosed between 2000 and 2007—nine to sixteen years ago. Given the relatively long latency period characteristic of ER+ disease recurrences, it may be that younger women have earlier recurrences of their disease than older women while overall breast-cancer-related mortality is unaffected by age. But for younger women, the time to stop thinking of ER+ disease as a "good" subtype is clearly now.

EMBRACA PARP Study by Helen Schiff 

The National Breast Cancer Coalition has partnered with the biopharmaceutical company, Medivation, on a phase lll clinical trial of talazoparib (MDVN 3800), a PARP inhibitor, for women with BRCA positive hereditary metastatic breast cancer. The trial is known as the EMBRACA study. In accordance with NBCC guidelines for supporting novel clinical trials, PARP inhibition is the first targeted treatment for BRCA positive breast cancer. (People with BRCA 1 positive breast cancer are not very responsive to chemotherapy). In addition, talazoparib works in a completely new way called "synthetic lethality". Instead of trying to correct the inherited mutation in the BRCA gene, PARP inhibition damages the cancer cell even more causing it to die instead of surviving as a cancer cell.

The trial design is also novel in that it avoids chemotherapy. Instead of comparing a PARP inhibitor plus chemotherapy to chemotherapy alone it compares talazoparib by itself to chemotherapy. In addition the trial is randomized on a two to one basis so that twice as many people receive the experimental drug than chemotherapy.

While there are other parp inhibitors in development, talazoparib, has the best preclinical data, which is why it is called the "best in class." Please spread the word among your networks about this trial.

For more information go to Clinicaltrials.gov and query metastatic breast cancer talazoparib (MDVN3800). There are 205 clinical trial sites for the EMBRACA study throughout the U.S. and the world.

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Shop Amazon and Support NBCC

AmazonSmile is a simple and automatic way for you to support NBCC every time you shop, at no cost to you. When you shop at smile.amazon.com, add NBCC as your charity. You’ll find the exact same shopping experience as Amazon.com, with the added bonus that Amazon will donate 0.5% of the purchase price to NBCC.   

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Save the Date 

Advocate Leadership Summit & Lobby Day - May 20-23, 2017 – Renaissance Arlington – Arlington, VA
Planning for the Advocate Leadership Summit & Lobby Day to be held May 20-23, 2017 has already started.  We will once again meet at the Renaissance Arlington Capital View Hotel in Arlington, Virginia. Registration will open on October 10, 2016.  Further details will be released soon.
 

Les Girls – October 16, 2016 – Avalon Hollywood – California
Please join us in celebrating the 16th annual Les Girls Cabaret on Sunday, October 16, 2016, at the Avalon Hollywood.  We will continue our tradition of a witty and fun evening with plenty of song and dance – all to raise funds for NBCC. Further information and a reservation form can be found 
here.

New York Gala – November 9, 2016 – Essex House – New York
Join us on Wednesday, November 9th for the 21st Annual New York Gala. We will honor two breast cancer grassroots advocates for their commitment to Breast Cancer Deadline 2020
®: knowing how to end breast cancer by January 1, 2020.  This annual fundraising event should not be missed.  Find out further details or RSVP here.

For further information, or to contribute and RSVP to Les Girls and the New York Gala, click here or contact Sharnita Goins at 202-973-0569 or SGoins@breastcancerdeadline2020.org.