National Breast Cancer Coalition

Call to Action November 2018

 
Breast Cancer Awareness Month has come and gone, and breast cancer is still an epidemic that affects women and men every day of the year. We know that the end of breast cancer will not come from pink ribbons and awareness. NBCC has made it our mission to work every single day on public policies, education and training and innovative research to end breast cancer.

According to The World Health Organization, the number of breast cancer deaths around the globe continues to increase.  Worldwide, more than 600,000 women will die from breast cancer this year alone. In the US, we will lose more than 40,000 women. At this rate of “progress”, by 2040, more than 991,000 women will die annually of breast cancer around the globe. I think we can all agree that one month of awareness, or awareness alone, is not enough to end breast cancer.

To end this disease, we need to take action every day through leadership, research and advocacy. NBCC has a blueprint to end this disease for all. We provide opportunities to take action year round including donating to support our research through the Artemis Projectattending the annual Leadership Summit or joining the National Action Network to advocate for public policies that impact breast cancer.

Stay connected with us on Facebook, Twitter and Instagram to learn about upcoming opportunities to get involved!

WANTED: Project LEAD® Grads

Attention Project LEAD® Grads and other NBCC stakeholders, NBCC will be opening our online application process for the 2019 Project LEAD Institute on Monday, December 3, 2019. The 2019 Institute will take place July 14 – July 19, in La Jolla, CA. We will be looking for committed advocates interested in learning more about the science of breast cancer and gaining leadership skills, who can help NBCC to achieve its mission of ending breast cancer. You can learn more about the Project LEAD® Institute on our website at: The Project LEAD® Institute. 

UPCOMING Project LEAD® EVENTS

There are several exciting upcoming opportunities for Project LEAD® grads to further hone their skills and deepen their knowledge of the science of breast cancer.

San Antonio Breast Cancer Symposium

If you plan to attend this Symposium, register for the 2018 Project LEAD® Advanced Topics Session! Registration for this session is free and it will be held on December 4th from 7:30am – 11:30am at the San Antonio Marriott Rivercenter. This year’s program includes a presentation on “Vaccines for the Treatment and Prevention of Breast Cancer” by Dr. Keith Knutson of the Mayo Clinic, as well as a presentation on the science behind CDK 4/6 inhibitors from Nick McAndrew, MD MSCE, Division of Hematology/Oncology, UCLA David Geffen School of Medicine. The program will also feature perspectives from several NBCC advocates about their role in clinical trials and the research process.

Upcoming LEAD Cast

On December 11th, NBCC will be hosting a LEAD Cast webinar with Dr. Vinay Prasad of the Oregon Health and Science University on “Clinical Trial Endpoints in Cancer Research.” The webinar will be held from 11-12:30pm EST. it is available to LEAD Grads only.  Further details will be forthcoming, so be sure to mark your calendar!

Recent Events

On Tuesday, November 6th, NBCC hosted an exclusive webinar with Dr. Dennis Slamon of the UCLA Jonsson Comprehensive Cancer Center. Dr. Slamon delivered a stimulating and enlightening presentation on the science behind the use of CDK 4/6 inhibitors and their current use as a potent treatment option for estrogen receptor (ER)-positive breast cancer. He also discussed the history of the first CDK 4/6 inhibitor for ER positive breast cancer—and the trials that led to approval. Look for a link to this webinar recording in the near future.

SUMMIT

Calling all advocates: 2019 Leadership Summit and Lobby Day!

We invite you to join us from April 27- April 30, 2019 at NBCC’s 2019 Advocate Leadership Summit.    
The Summit is filled with sessions to build advocacy skills, learn about up to date science and interact with policy makers, researchers and other advocates, all to energize us for the important work in the year ahead. Sessions include a discussion of the current landscape of breast cancer treatment approaches with Drs. Stephanie Goff, M.D., of the National Cancer Institute and H. Kim Lyerly, M.D., of Duke; an update on the Artemis Project; and a panel of advocates, ethicists and scientists discussing conflicts of interest and their effect on breast cancer. 

On Tuesday, April 30, 2019, we will once again host a Lobby Day on Capitol Hill. With a new Congress in 2019, it is more important than ever that NBCC advocates take to the Hill to explain our agenda and push for support. Start by registering for the 2019 Advocate Leadership Summit today.

SCIENCE SPOTLIGHT

The search for a blood test for cancer: liquid biopsies

The idea of a blood test – also known as a liquid biopsy - to diagnose cancer and its recurrence excites the public and researchers, not to mention industry. What exactly do we know at this point about that approach?

Biopsies - tests that remove tissue or sometimes fluid from a suspicious area - have been a major part of breast cancer research and care for decades. In breast cancer, biopsies are needed to answer questions such as: Do I have cancer? If so, what kind? How can it be treated?

Tissue biopsies are used to determine if a suspicious lump is in fact cancer; a pathologist looks at the removed cells to see if they are abnormal or malignant (cancer). If the tissue is cancerous, it can be evaluated to determine its molecular makeup. For example, is it ER positive? Does it overexpress Her2? In the research setting, the tissue can be used to look for targets for new drugs. 

Tissue biopsy is far from perfect. It is an invasive procedure and can pose risks to the patient, such as bleeding and infection. For some breast cancer patients, a tissue biopsy is not an option because of the tumor location, especially in the metastatic setting, leaving many patients without a concrete diagnosis. In addition, because each tumor’s makeup is different, something known as the “heterogeneity of tumors”, results can vary depending upon the section of tissue removed.

For many years, researchers have been on a quest to try and find a better way of detecting if a person has cancer, as early as possible and in a less invasive way. This is all based on the often questioned premise that the earlier that cancer can be found, the higher the chance of not dying of it. (2) Another goal of this type of test would be to diagnose recurrence of the cancer and to possibly test the genetic makeup of the recurrence.

Enter a test that’s been in the news a lot recently: the “liquid biopsy”. Liquid biopsies work by examining a patient’s blood to see if it contains any captured cancer cells or DNA that tumors shed into the blood, also known as circulating tumor DNA (ctDNA) or any other abnormalities. These tests are less invasive and may overcome the limitations of tumor location. While the ultimate goal of liquid biopsy is detection of cancer in early stages, the hope is these tests could help detect cancer more accurately, guide individualized therapy, and better monitor patients' progress during treatment.

So, if they are so much easier on the patient, why aren’t liquid biopsies widely used for cancer detection? Because there is no evidence that they work. An expert review panel, formed jointly by the American Society of Clinical Oncology (ASCO) and the College of American Pathologists (CAP), conducted a literature review on the use of ctDNA assays for solid tumors and concluded that "liquid biopsies — which can detect circulating tumor DNA (ctDNA) in blood samples — are not yet ready for prime time in the diagnosis or management of early-stage or advanced solid tumors”.  The panel found they were not useful in monitoring patients for minimal residual disease following definitive treatment of cancer, nor for cancer screening and that there is as yet no reasonable evidence that these tests would be useful outside of a research setting. (3) There are a few ongoing studies attempting to get that evidence, two of which are being conducted by a company known as Grail, Inc. which is focused on early detection. (4)

There are many questions still unanswered. What about overtreatment - do all the cancers a test would find need to be treated? Would the abnormalities found be a precursor of cancer or will most never become lethal disease? Maybe some early stage tumors would be destroyed by the patient's own immune system. And if we find things "early" what do we do with that information? Will we just be creating an entirely new set of "patients” and doing more harm than good? Last but certainly not least, what about the price for these tests and the competition among companies who want to be the first to bring to market a liquid biopsy test? The global market for liquid biopsy is predicted to be worth over $2 billion by 2022. (5) These questions remain mostly unanswered but are of deep interest to advocates. We must make certain that these tests actually help people, that they do more good than harm and save lives.

  1. NCI Dictionary of Cancer Terms: Biopsy https://www.cancer.gov/publications/dictionaries/cancer-terms 

  2. American Cancer Society: Breast Cancer Survival Rates http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage Accessed 10/29/16
  3. Circulating Tumor DNA Analysis in Patients With Cancer: American Society of Clinical Oncology and College of American Pathologists Joint Review Journal of Clinical Oncology 36, no. 16 (June 1 2018) 1631-1641. DOI: 10.1200/JCO.2017.76.8671

  4. GRAIL https://grail.com/clinical-studies/

  5. Liquid Biopsy Market By Type of Cancer Analysis; By Product and services Analysis; By Circulation Biomarkers Analysis, Circulating Tumor DNA (ctDNA); By End User Analysis and By Regional Analysis – Global Forecast by 2016 – 2022 https://www.marketresearchengine.com/liquid-biopsy-market

LEGISLATIVE UPDATE

Thanks to the great work of our grassroots network, a total of 94 Representatives have cosponsored the Metastatic Breast Cancer Access to Care Act, H.R. 6114. This legislation would waive the 24 month waiting period for Medicare eligibility and the 5 month waiting period for Social Security Disability Insurance benefits for individuals with metastatic breast cancer. 

  Additional 2018 Priorities:

  • $150 Million for the Department of Defense (DoD) Breast Cancer Research Program (BCRP) for FY2019: The Department of Defense Appropriations Legislation includes $130 million dollars for fiscal year 2019 for the DOD Breast Cancer Research Program. The Legislation has passed both the House and Senate and has been signed by the President. Great job NBCC Advocates!

  • Preservation of the Medicaid Breast and Cervical Cancer Treatment Program: Congress enacted the Breast and Cervical Cancer Treatment Act in 2000 after years of NBCC grassroots lobbying and influence.  NBCC remains committed to ensuring all women and men screened and diagnosed with breast cancer through federal screening programs have access to the treatment they need. If there are problems with the program in your state, let us know!

Learn more about NBCC legislative priorities

As always, thank you for your important advocacy on behalf of the National Breast Cancer Coalition and our mission to end breast cancer! 

DNA.LAND: We need you

Funded by a seed grant from NBCC’s Artemis Project®, DNA.Land is developing a DNA database to further study breast cancer genomics. 

The database will serve as an important tool for breast cancer researchers and has the potential to advance approaches to prevent recurrence and determine risk for the disease. NBCC and DNA.Land scientists need participation from as many people as possible who have or have had breast cancer or have a first degree relative with a history of breast cancer.

If you’ve had your DNA analyzed with direct-to-consumer companies like 23andMe, AncestryDNA, or FamilyTreeDNA, you can upload your genomic information to DNA.Land’s database and help scientists learn more about the genetics of breast cancer.  The genomic data, along with answers from a breast cancer questionnaire developed by researchers and NBCC-trained advocates, will be used to identify genetic variants that impact risk and recurrence of the disease.

You can learn more about the collaboration here and here.

 DONATE

President’s Council

You can become a member of NBCC’s the President’s Council! A gift of $1,000 or more entitles you to membership in this group with special benefits. Members receive regular communications directly from NBCC’s President on current breast cancer issues, recognition in publications, and invitations to special events.

Women with Balls New York City

Join NBCC for the Women with Balls fundraising event in NYC!

Strike! Breast Cancer on Tuesday, May 7, 2019 at Bowlmor Lanes, Times Square, New York, NY. 

 

5:30 PM – Registration

6:00 PM – Champagne Reception

6:30 PM to 8:30 PM – Bowl! Strike! Compete! Win!

 

Enjoy food and drinks, prizes will be awarded to the top individual and team fundraisers.  Register and create your fundraising page.  If your company wants to be a sponsor, contact Sharnita Goins for sponsorship opportunities (sgoins@breastcancerdeadline2020.org).


Remember to use AmazonSmile during Black Friday and Cyber Monday or anytime this holiday season.  It’s a simple and automatic way for you to support NBCC every time you shop, at no cost to you. On your first visit to AmazonSmile (smile.amazon.com), you need to select National Breast Cancer Coalition Fund to receive donations from eligible purchases before you begin shopping. Amazon will remember your selection, and then for every eligible purchase you make at smile.amazon.com Amazon will  donate a portion of the purchase price to NBCC.

DEADLINE CHAMPION

The annual NBCC Summit will be held on April 27-30, 2019. This is your best opportunity to hone your leadership and advocacy skills, and engage with researchers and other advocates who share NBCC’s vision of ending breast cancer. 

Set up a Deadline Champions fundraising page to support Deadline 2020 and earn benefits as you progress—such as free Summit registration at the $350 level and free three-night shared hotel room at the $750 level.