National Breast Cancer Coalition

Call to Action May 2017

Help End Breast Cancer: Join NBCC and New York Genome Center to crowd source data 

Breast cancer researchers will soon have a new tool to better understand innovative approaches to ending the disease.

This month, NBCC is announcing a new collaborative research project with DNA.Land, the nonprofit crowdsourcing website created by scientists at the New York Genome Center (NYGC). Funded by an Artemis seed grant, the breast cancer arm of the project asks women and men who have participated in geneology tests to share the results and answer a short questionnaire about family history and breast cancer. After consent, participants are asked about history, including that of first degree relatives.

Large sample sizes are needed, and anyone who has participated in genealogy testing from any of the direct-to-consumer companies like 23andMe, MyHeritage, AncestryDNA or Family Tree DNA, can help with the study.

The new database will serve as an important tool for breast cancer researchers and has the potential to help develop new approaches to preventing breast cancer and to metastatic disease.   

DNA.Land scientists need participation from as many participants as possible who have, or have had breast cancer or have a first degree relative with a history. They will tap into the millions of people who already have had their DNA sequenced through commercial companies to participate in this potentially life-saving study.

 To learn more, and to sign up, go to:  We need as many individuals as possible, so if you have not yet looked into the geneology testing, please consider doing so!


My ACA Story, Part 2 - Leigh Pate, Seattle WA

I learned about the National Breast Cancer Coalition in 2011 from Dr. Susan Love’s Breast Book while researching and making treatment decisions about my lobular breast cancer. I attended the NBCC Advocacy Leadership Summit in 2015 to learn more about the organization and help advance the work, and attended Project LEAD® later that summer. Since then, I’ve worked to launch patient advocacy efforts to advance research, screening and improve treatments for lobular breast cancer, as well as served as patient advocate on initiatives with Fred Hutch Cancer Research Center in Seattle.

I have worked as a consultant for my own business since 2000.  I always purchased individual health insurance policies, and never went without health insurance.  I bought policies from the limited pool of individual policies that were available and chose the best policy I could afford.

The Washington State individual health policy I held when I was diagnosed with early-stage breast cancer in 2011 was an HSA policy with a $3000 deductible.  It had no prescription coverage, a two-million dollar lifetime limit and other restrictions in coverage. There were relatively few policies available to choose from at the time, even for a relatively healthy 44 year-old woman like me; an athlete and a non-smoker. 

When I completed breast cancer treatment and added up the costs billed to insurance for my care, my bills totaled nearly $300,000 from diagnosis in October 2011 through the end of 2012 - the year when the primary active cancer treatment ended.  My out-of-pocket costs for health care were over $14,000.  The insurance paid for everything it was contracted to cover. I was fortunate and able to pay for needed care out of pocket, fortunate to not have to make hard choices about whether to purchase or pass on the drugs and rehabilitative care and other treatments that were beyond the limits of my policy. 

After breast cancer treatment ended, I set the alarm on my calendar to remind me to pay for this health insurance policy every month and make sure the check cleared, worried that if I missed a payment I would be dropped immediately and never be able to get coverage again.

The Affordable Care Act (ACA) changed everything.  I could shop for a better policy that covered the services I needed, and knew I couldn’t be dropped and left vulnerable if my cancer recurred.  The peace of mind of knowing I had better quality and more dependable health coverage if I needed it again pushed health care worries away and let me concentrate on recovery and rebuilding life after cancer.

In December 2016, the five-year anniversary of my first breast cancer diagnosis and the week of my 50tth birthday, I learned I had a brand new, unrelated cancer of the fallopian tube. As Congress has debated health care for patients like me, I have been undergoing chemotherapy and recovering from surgeries.  And in between cancer treatments, I’ve once again been evaluating my finances and trying to comprehend how I will pay for cancer care out of pocket if I lose my health insurance.  If I can sustain health insurance that has good quality health coverage, I can make the finances of cancer work.  Without stable coverage, there is no amount of financial planning or penny-pinching that will make out of pocket of cancer care costs manageable for long. 

If the new Republican proposal that seeks to eliminate the ACA’s protections for people with pre-existing conditions is passed, Me and millions of others with pre-existing conditions will lose their shirts, and maybe their lives.


Immune Checkpoint Inhibitors 

Immune checkpoint inhibitors are being touted as revolutionary anticancer therapies, and these drugs are being used in hundreds of clinical trials. This is an exciting advance in cancer therapy, but not everyone benefits and there may be significant harms.

What is an immune “checkpoint”?  The concept is similar to the checks and balances that may occur in many other systems. The idea of an immune checkpoint is analogous to cell cycle checkpoints, which are molecular events that occur at various points in the cell cycle and let cells “check” to see if the cell should proceed to the next step in cell division. The cell receives a signal whether to proceed or not. Within the immune system, for example, the system may receive a signal to activate in response to an infection. If there is not a “check” to turn off the system at some point, ongoing and escalating immune responses will occur and, even if to a harmful infection, will become a problem.

In the immune system, for T cells, signals come from antigen-presenting cells which activate T cells and allow these activated cells to decide whether to proliferate (multiply). This is like giving a signal by putting your foot on the accelerator. If the T cells are activated, at some point, immune checkpoints will receive a signal to slow the process down, similar to putting your foot on the brakes, to prevent uncontrolled ongoing stimulation of the T cell. So the role of the immune checkpoint is to turn off or impair the proliferation of activated T cells. If T cells are activated and proliferating, they can attack tumor cells. But, a different set of immune checkpoints can prevent these activated T cells from killing the tumor cell.

There are different types of immune checkpoint inhibitors. The first immune checkpoint inhibitor belongs to a class of drugs that blocks an interaction that turns the T cell off. This interaction is between the T cell protein CTLA-4 and proteins collectively referred to as B7 (also called CD80 and CD86).  These proteins are typically not present on the tumor or target cell but are present on immune cells called antigen-presenting cells that, as explained above, help activate T cells. B7 also binds to another protein on T cells, the protein CD28. When B7 binds CD28, this interaction is “costimulatory” and helps the T cell recognize and kill the tumor cell. The presence of cancer may also alter the immune system through the CTLA-4 pathway so that the tumor-targeting T cells do not proliferate in response to the antigen-presenting cells. Yervoy (ipilimumab) is an antibody drug that inhibits CTLA-4.

The next generation, and more potent class, of immune checkpoint inhibitors blocks an interaction between T cells and the tumor cells that is mediated by the protein PD-1 on the T cell and the protein PD-L1 on the cancer cell. Cancer cells have subverted the PD-L1/PD-1 pathway so that the cancer cells inactivate the T cells that would bind to them and kill them.  Keytruda (pembrolizumab) and Opdivo (nivolumab) are antibody drugs that inhibit PD-1, Tecentriq (atezolizumab) is an antibody drug that inhibits PD-L1. Drugs blocking the immune checkpoint pathways try to prevent cancer from using these pathways to evade the immune system. Tumor regression, both of primary and metastatic tumors, has occurred with some cancer patients with immune checkpoint inhibitors.

Remember though, the immune system has an important role in our bodies and interfering with its normal process can result in very harmful side effects. An “unleashed” immune system can attack healthy, vital organs. Furthermore, not all patients respond to these drugs and, surprisingly, those that will respond are not necessarily those with high amounts of the relevant targets on their tumors. New research may begin to explain why the cancer cells alone may not be the best indicators of responsiveness. A study by Kamphorst and colleagues with a mouse model of cancer found that that an interaction between another receptor-ligand signaling system (CD28 on the T cells and B7 on other immune cells) was important for anti-PD-L1 to work as an antitumor drug.  A second study by Hui and colleagues used biochemical experiments and experiments with cultured cells to show that the PD-L1/PD-1-mediated immune checkpoint pathway blocks T cell activity by inhibiting the costimulatory function of CD28.  These studies may begin to explain why the amount of PD-L1 on tumor cells is not a good indicator of whether the patient will respond to immune checkpoint inhibitors targeting the PD-L1/PD-1 pathway.

Together, these studies may provide information that can lead to human studies, so that in the future clinicians may identify patients most likely to respond to these drugs and provide key clues to understanding the biology that underlies immune evasion by tumor cells. With such information, researchers can continue to improve strategies for getting the immune system to recognize cancer cells, which could be leveraged to both treat and prevent cancer. In breast cancer, we are not there yet.


Immune checkpoint inhibitors to treat cancer. American Cancer Society (updated 3 February 2017).

Cancer immunotherapy: Breast cancer. Cancer Research Institute (updated March 2016).

E. I. Buchbinder, A. Desai, CTLA-4 and PD-1 pathways: Similarities, differences, and implications of their inhibition. American Journal of Clinical Oncology (February 2016), 39: 98–106. DOI: 10.1097/COC.0000000000000239,.17.aspx

A. O. Kamphorst, A. Wieland, T. Nasti, S. Yang, R. Zhang, D. L. Barber, B. T. Konieczny, C. Z. Daugherty, L. Koenig, K. Yu, G. L. Sica, A. H. Sharpe, G. J. Freeman, B. R. Blazar, L. A. Turka, T. K. Owonikoko, R. Pillai, S. S. Ramalingam, K. Araki, R. Ahmed, Rescue of exhausted CD8 T cells by PD-1–targeted therapies is CD28-dependent. Science (9 March 2017). DOI: 10.1126/science.aaf0683

E. Hui, J. Cheung, J. Zhu, X. Su, M. J. taylor, H. A. Wallweber, D. K. Sasmal, J. Huang, J. M. Kim, I. Mellman, R. D. Vale, T cell costimulatory receptor CD28 is a primary target for PD-1-mediated inhibition. Science (9 March 2017). DOI: 10.1126/science.aaf1292.



Want to know what is happening in breast cancer? Attend the 2017 Advocate Leadership Summit and Lobby Day

Hear from renowned scientists about current research into preventing breast cancer and metastatic disease; learn about various approaches to health care reform; interact in small settings with scientists and network with other advocates. Become an activist and learn how to raise your voice. This year’s Summit will include all that and more. Join us at the Renaissance Capital View hotel in Arlington, Virginia for the speakers, topics, skill building, message training and strategic planning that will energize us for the important work in the year ahead. On Tuesday, May 23, 2017 we will once again host a Lobby Day on Capitol Hill.

The registration fee for this year’s Summit is $500: This entitles you to three days of outstanding programming, Summit materials, breakfast, lunches and refreshment breaks, the Monday night reception, and breakfast, lunch and transportation on Lobby Day. This does not include hotel lodging. Advocates will participate in the full range of sessions, plenaries, keynotes, strategy workshops, public policy training and Lobby Day. Please note that there is no charge for participating in Lobby Day, even if you aren’t able to attend the Summit. Register directly here.

Become a Fundraiser: Set up a Deadline Champions fundraising page to support Breast Cancer Deadline 2020® and earn benefits as you progress—such as free Summit registration at the $500 level and free three-night shared hotel room at the $1,000 level.

BRING A NEW LEADER, GET A DISCOUNT: If you bring a new attendee (she or he has never attended the Leadership Summit), both you and the new attendee will receive $100 off your $500 summit admission fee. So, both you and your newly recruited advocate leader would pay $400 each or each raise $400 to attend the summit. The new attendee could have attended an NBCC conference (2012 or before) or Project LEAD® (any year) in the past.

TRAVEL SCHOLARSHIPS AVAILABLE: Once you have registered and paid or raised your registration fee and are interested in applying for a travel scholarship, please email Selena at for more information. You must have attended a previous Advocate Leadership Summit (2013-2016) to qualify for a travel scholarship.

For Frequently Asked Questions, Click Here

Get started today! REGISTER NOW!

Women with Balls NYC

New York, NY | May 2, 2017 

It was a night of fun and laughter, bubbles and balls and bowling to end breast cancer.

NBCC's first Women with Balls® bowling fundraiser event in New York City was a great success. With more than 100 attendees, the evening included a champagne reception, followed by lots of food, bowling, awards, and prizes! 

Thank you to all who supported the inaugural Women with Balls® bowling event in NYC!

Every Day is Mother’s Day 

Mother’s Day is an opportunity to celebrate the women who have made an impact on our lives.  It’s the day to commemorate all mothers and the women who have inspired us along the way!  But we do not have to do this only on Mother's Day. You can still honor and remember Mom or a woman who has inspired you and support an end to breast cancer.

Women in this country have a 1 in 8 lifetime risk of getting breast cancer. Three million women nationwide are living with the disease.  This year alone, more than 40,000 women in the U.S. will die of breast cancer. Invest in the lives of the women you love - and their daughters, granddaughters, sisters, aunts and friends- share their stories – and share your story.

Support an end to breast cancer today, then take a moment to tell NBCC about the person you are honoring.  Post a photo, write statements about how she inspired you, share a video of your tribute, caption it and tag #deadline2020.  Like, share, and comment on the stories you see!

 #BCD2020 #MothersDayIsEveryday   @deadline2020      

We look forward to looking at your posts and watching your videos. Together, we will commemorate these powerful women and take another step closer to the end of breast cancer.

Enjoy a Night of Laughter and Support NBCC!

NBCC has proudly joined forces with GFour Productions, producer of Menopause The Musical®. Through May 1, the show that has brought joy to millions of women is turning laughter into the best medicine, and will donate 100% of the proceeds from their Hot Flash Fans sales to NBCC. Additionally, patrons can save 20 percent on tickets when using the code CURE (use MMCURE for Las Vegas shows) and GFour Productions will donate $5 of every ticket sold to NBCC. Now celebrating 15 years of female empowerment through hilarious musical comedy, Menopause The Musical® has evolved as a "grassroots" movement of women who deal with life adjustments after 40 by embracing each other and the road ahead. Menopause The Musical® is playing in cities nationwide. For a list of tour dates and ticket information, visit