National Breast Cancer Coalition

Call To Action Online March 2019

Public Policy Update 

Legislative Priority: Metastatic Breast Cancer Access to Care Act

One of NBCC’s top priorities is a bill to waive the waiting periods for benefits and Medicare coverage, for those diagnosed with metastatic breast cancer who are eligible for Social Security Disability benefits. We recently had the opportunity to submit testimony to the House Ways and Means Subcommittee on Social Security for the hearing, "Protecting and Improving Social Security”, in support of our bill, the Metastatic Breast Cancer Access to Care Act.  We are working with our Lead Sponsors Representatives Peter King (R-NY) and Kathy Castor (D-FL) to have the bill reintroduced in the House.  

Legislative Priority: $150 Million for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2020:

NBCC advocates have been hard at work contacting their representatives and urging them to sign the FY2020 House Dear Colleague letter in support of the DOD BCRP. Thanks to your efforts, this year’s letter has 195 signers. Please check the list of those members of the House who signed the letter here. And thank each one of your state's Members who supported this vitally important program.

We are not finished yet! We are still working to get cosigners on this year’s Senate letter. The deadline for your Senators to sign is Friday, April 5. Please check this list of who has already signed the letter. If your Senator(s) are not on the list, ask them to sign on.

Your message to your Senators is:

I urge you to show your support for ending breast cancer by signing the letter to the Senate Appropriations Committee Chair Shelby and Ranking Member Durbin calling for $150 million for the DOD peer-reviewed Breast Cancer Research Program for FY2020.

If your Senator(s) agrees to sign the letter, her/his staff should email Jasmin Palomares (Jasmin_Palomares@gillibrand.senate.gov) in Senator Gillibrand's office to make it happen.

As always, thank you for your amazing advocacy!

Team Leader Training

NBCC held Team Leader Training on March 17th and Team Leader Lobby Day on March 18th. Breast cancer advocates from around the country traveled to Washington, D.C. for an intensive training on NBCC's 2019 legislative and public policy priorities, the legislative process, and developed action plans for building relationships with new Members of Congress. Following the training, Team Leaders spread across Capitol Hill, and met with Senators, Representatives and staffers to advance NBCC’s legislative and public policy agenda.

Artemis Project® Update

The annual meeting for the Artemis Project® was held in early March.  The more than 35 participants brought many different perspectives to the discussion and included advocates, clinicians, and scientists with expertise ranging from development of clinical trials, vaccine development, clinical oncology, immunology, cell biology, genomics, computational biology, and data mining. The meeting report will be published soon.

Widespread Genetic Testing Among Breast Cancer Patients – More Harm Than Good

When it comes to genetic testing recommendations, who are the experts?  There are many sources of recommendations, including medical genetics professional associations/societies (of which there are many), cancer societies and organizations, and federal and international bodies. The various professional associations represent physician and science specialties, and their missions are focused on their professional members. Who is making recommendations focused on the public? And who is unbiased and unconflicted? As patients and concerned members of the public, we need to critically review every set of recommendations that come out of the medical professional associations in that context. We must question all sources, including cancer societies and nonprofits. Who is in leadership? Who bases their recommendations on level 1 evidence? What conflicts of interest exist? As individuals, we need to understand the evidence behind the recommendations and what they actually mean for people. 

For instance, you have probably heard in varied news feeds in the last month about the new “Consensus Guideline on Genetic Testing for Hereditary Breast Cancer” released by the American Society of Breast Surgeons (ASBS). This consensus-based guideline recommends that all individuals with a breast cancer diagnosis (i.e., newly diagnosed or living with a history of the disease) and those without the disease who are at high risk, receive or be offered germline (hereditary-based) genetic testing for BRCA1/BRCA2 and other, even rarer inherited genetic mutations that appear to correlate with an increased risk of breast cancer (e.g., PALB2, CHEK2 and ATM). 

To put this into perspective, approximately 3.5 million women in the United States were living with a history of breast cancer as of January 1, 2016. In addition, in 2019 more than 271,270 new cases of invasive breast cancer, and nearly 63,000 cases of carcinoma in situ of the breast will be diagnosed (ACS, 2019). And these numbers don’t include the individuals without breast cancer who meet existing guidelines for genetic testing based on family history. 

What is the benefit? We do not know if genetic testing saves lives. We do know however, that the choices for those who test positive are limited and harsh, including removing healthy body parts. 

All this, taken together with current epidemiologic data regarding the low prevalence of these mutations (e.g., about 0.25%–0.5% in the general population, and 5%–10% of all breast cancer patients), do not make for a strong case to institute such wide-spread hereditary genetic testing (Anglian Breast Study Group, 2000; Antoniou et al., 2002; Couch et al, 1996; Peto et al., 1999). 

And one can imagine that the resources (e.g., patient time, staff time, and money) required to implement these recommendations would be ENORMOUS, including not only the high costs for the genetic testing itself, but also the companion patient education, test interpretation, and genetic counselling that would be required for each patient. Other disadvantages no less important include the potential for genetic discrimination, the impact of test results for other family members, and the accuracy of the test results. For instance, false positives for BRCA1 and 2, particularly with the use of direct to consumer (DTC) genetic testing kits are high, with recent reports suggesting that up to 40 percent of positive results are false positives (Tandy-Connor et al., 2018). 

Notably lacking from most of the news reports about the new ASBS guidelines, including the guidelines themselves, is any mention of the differing recommendations of other more impartial leading expert bodies, including the United States Preventive Services Task Force (USPSTF) (updated draft recommendations made available in February 2019). In its 2019 recommendations, the USPSTF cite lack of strong evidence to warrant universal testing among individuals (with or without breast cancer) unless a patient’s personal or family history—assessed using a validated instrument—suggests the possibility of an inherited genetic mutation. 

In light of the underwhelming evidence to support the widespread use of genetic screening recommended by the ASBS, NBCC advocates should be talking about the USPSTF guidelines and the importance of understanding evidence and pushing for better use of resources and better clinical studies designed to make meaningful impacts toward ending breast cancer. 

References

  • American Cancer Society. Cancer Facts & Figures 2019. Atlanta: American Cancer Society; 2019.
  • American Society of Breast Surgeons. Consensus Guideline on Genetic Testing for Hereditary Breast Cancer. February 2019.
  • Anglian Breast Cancer Study Group. Prevalence and penetrance of BRCA1 and BRCA2 mutations in a population-based series of breast cancer cases. Br J Cancer. 2000;83(10):1301-1308.
  • Antoniou AC, Pharoah PD, McMullan G, et al. A comprehensive model for familial breast cancer incorporating BRCA1, BRCA2 and other genes. Br J Cancer. 2002;86(1):76-83.
  • Couch FJ, Farid LM, DeShano ML, et al. BRCA2 germline mutations in male breast cancer cases and breast cancer families. Nat Genet. 1996 May;13(1):123-5.
  • Peto J, Collins N, Barfoot R, et al. Prevalence of BRCA1 and BRCA2 gene mutations in patients with early-onset breast cancer. J Natl Cancer Inst. 1999;91(11):943-949.
  • Tandy-Connor S, Guiltinan J, Krempely K, et al. False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care. Genet Med. 2018 Dec;20(12):1515-1521. Epub 2018 Mar 22.
  • United States Preventive Services Task Force. Draft Recommendation Statement. BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing. February 2019.

Join us for the 2019 Advocate Leadership Summit!

The annual Summit is almost here! Join fellow advocate leaders from across the country to learn from leading scientists, strengthen your advocacy toolbox, and network with your fellow breast cancer advocates. The deadline for booking a hotel room at NBCC’s discounted rate has been extended to April 3, so reserve your room today!

This year’s Summit features numerous exciting plenaries, including “Advocates in Science – Advocacy Organizations Leading the Charge,” featuring:

  • Elizabeth Frank, Patient Advocate, Dana-Farber/Harvard Cancer Center Breast Cancer Advocacy Group
  • Mark Harrington, Executive Director, Treatment Action Group
  • Norman Scherzer, Executive Director, The Life Raft Group

They will discuss what role advocates can play in moving science in the right direction and the strategies they have used to move their agendas forward. 

Other plenaries and skill-building workshops will feature topics including conflicts of interest in breast cancer research, disparities, and informed consent in clinical research. In addition, we will be offering Project LEAD grads a special pre-conference workshop on Saturday, April 27th titled “Awakening Dormant Tumor Cells,” led by DoD/BCRP Era of Hope Scholar, Dr. Mikala Egeblad, from Cold Spring Harbor Laboratory. 

Visit our website to view the full agenda! We hope you will join us. 

More details about the event: 

  • WHEN: Saturday April 27 – Monday April 29, 2019
  • LOBBY DAY on Capitol Hill: Tuesday April 30
  • WHERE: Renaissance Capital View Hotel in Arlington, VA 

Register today or set up a Deadline Champions fundraising page to support NBCC’s mission to end breast cancer, and earn benefits as you progress—such as Summit registration and/or hotel stay! 

For those of you who are participating in our Deadline Champions fundraising activity, we have prepared a useful Fundraising Guide to help you make the most of your activities. This resource provides a wealth of tips and helpful strategies for reaching your fundraising goal!

Women with Balls®: Strike Breast Cancer Fundraising Event  

Have fun and help end breast cancer at the 2019 Advocate Leadership Summit Annual Women with Balls® Bowling Challenge! 

Entry Fee & Participation:
Bowler: Show us what you got! Raise or donate a minimum of $500. All you can bowl, eat, drink and a chance to win exciting prizes.

Cheerleader: Not a bowler but want to join the fun and cheer for your friends? Not a problem! Raise or donate a minimum of $250. We'll spare you the bowling. Eat, drink, and compete for Best Cheerleader prize.

Women with Balls® T-shirts are provided to all participants.

When: Monday, April 29, 6:00 p.m. to 9:00 p.m.
Where: Lucky Strike at Gallery Place, 701 7th St., NW, 202.347.1021

Raise funds through a Deadline Champion fundraising page and you will be on a roll!

Space is limited so sign up today! RSVP to Sharnita Goins at 

Apply for the 2019 Project LEAD Institute

The deadline to submit applications for the 2019 Project LEAD Institute is fast approaching!

The Project LEAD Institute, will be held this year on July 14 – 19 in La Jolla, CA. Selected advocates will participate in an in-depth education on the complex science of breast cancer, as well as topics such as research methodology and clinical trial design, by renowned expert faculty.

Spread the word to your networks and encourage those interested to apply.

  • Final Deadline for Applications: April 19th, 2019, 5pm EST 

For more information on the Project LEAD Institute and how to apply, visit our website

For questions? Please email ProjectLEAD@BreastCancerDeadline2020.org


Join NBCC for Women with Balls® event in NYC!  

NYC Women with Balls® bowling fundraiser will be held at the Bowlmor Lanes Times Square on May 7, 2019.  This is a great event that brings together like-minded, compassionate and energetic women and men to raise money, bowl and have fun – all for a really wonderful cause.  T-shirts will be provided, and you can enjoy food, drinks and prizes.

There are three ways you can participate:
1. Teams of 8 bowlers raise a minimum of $3,600 to play and will receive a private lane. 
2. Teams of 4 bowlers must raise a minimum of $1,800 to play.

3. Individuals who raise a minimum of $450 will be paired with a team.

Interested in being a 2019 Women with Balls® Event Sponsor?
Download information to learn more!

For more information and to register your team, go to: www.Deadline2020.org/WWBNYC2019. If you are unable to attend and wish to donate, contact Sharnita Goins at 202-973-0569 or SGoins@breastcancerdeadline2020.org.