National Breast Cancer Coalition

Call to Action October 2018

This Breast Cancer Awareness Month 

Join NBCC'S Movement to End Breast Cancer

Over the past many years, millions of dollars have been spent on campaigns to raise awareness about breast cancer. Despite ever expanding screening programs, advertising campaigns and increased fundraising efforts, we are far from preventing breast cancer or preventing deaths from it.

Pink campaigns have made consumers more aware of the disease, however that alone will not change the status quo that results in more than 40,000 deaths annually in the United States and 522,000 deaths worldwide.

This October, as the conversation turns to breast cancer, turn awareness into action. Buying the latest pink product will not bring us any closer to ending breast cancer. Whether or not you want to purchase another pink t-shirt or mug, consider supporting NBCC’s work to end breast cancer.

NBCC provides many opportunities to take action including donating to support our research through the Artemis Project, attending the annual Leadership Summit or joining the National Action Network to advocate for public policies that impact breast cancer. Help us remake October and every month thereafter, let’s end breast cancer together!

End Breast Cancer: Vote!

Breast cancer is a political issue and breast cancer policy is made by those who are elected to office. Election results are determined by those who vote. In 2016, roughly 43% of eligible voters did not vote in the election. 

Our democracy is made stronger when we all participate. As a result, NBCC has again launched its End Breast Cancer: Vote! Campaign.

As an organization, we will use our platform to conduct outreach through social media to speak about voting and the importance of supporting officials who are committed to ending breast cancer. You can learn more about this campaign and how to engage those running for office by visiting VoteBreastCancer.Org. We are all stronger when we hold elected officials accountable.

2019 Advocate Leadership Summit & Lobby Day

Registration is now open for the 2019 Advocate Leadership Summit! 

The next annual 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.

The Summit will feature stimulating speakers, engaging workshops, and advocacy training designed to strengthen your skills. The program will also feature discussions of the latest scientific approaches to ending breast cancer, as well as in-depth updates from scientists and advocates involved in the Artemis Project. 

On Tuesday, April 30, 2019, we will host a Lobby Day on Capitol Hill. In this uncertain political climate, it is vital that we push even harder to make our mission of ending breast cancer a reality. Take action by registering for the Advocate Leadership Summit today!

Attention Project LEAD® Grads!

NBCC is currently fielding an online needs assessment survey to all Project LEAD graduates.

NBCC is committed to providing you with ongoing educational opportunities to enhance your knowledge and confidence to collaborate with researchers, disseminate evidence-based information to the public, and push for access to evidence-based quality health care in your communities. NBCC would like to hear from you regarding the types of learning activities and topics that you would be most interested in and that you believe would serve to improve your breast cancer science advocacy role.

If you have not yet completed the survey, please take a few moments to do so. Your responses will help us shape future Project LEAD programming. Your responses will help us shape future Project LEAD programming. It should take you no more than 10 minutes to complete. Email Michelle Tregear at mtregear@breastcancerdeadline2020.org with questions.  

Legislative Update

Thanks to the great work of our grassroots network, we have a total of 89 Representatives who have cosponsored the Metastatic Breast Cancer Access to Care Act, H.R. 6114. If passed, the 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 jobs 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.

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! 

Science Spotlight2



The Side Effect of Financial Toxicity After Breast Cancer

We all know about the toxic side effects of cancer treatment, both physical and emotional. The media and the public are beginning to focus on another risk for patients: “financial toxicity". A main cause is no secret: high cancer drug prices. In 2013, cancer patients paid $207,000 a year, on average, for their medications, compared with $54,100 a year in 1995. [1] It is not something you think about before you or your loved ones are diagnosed with cancer. But it is the harsh reality we face.

Why are cancer drugs so expensive? One reason is that there is a great deal of money flowing throughout the world of breast cancer. Recently, Dr. Jose Baselga, a well-known cancer researcher, resigned as chief medical officer at Memorial Sloan Kettering (MSK) Cancer Center in New York. Reports revealed he had failed to disclose millions of dollars in payments from drug and health care companies in dozens of research articles in prestigious publications. There was more news, this time about an artificial intelligence start-up, Paige.AI--founded by three insiders at MSK. The company was granted sole rights to MSK’s 25 million patient tissue slides and pathologists' extensive library of past work. Memorial Sloan Kettering holds an equity stake in Paige.AI, as does a member of the cancer center’s executive board, the chairman of its pathology department and the head of one of its research laboratories. Three other board members are investors. And this is just one institution. The news is not just on the medical side; Pharmaceutical company executives publically bemoan their multi-million dollar incomes; and another claims he has a “moral obligation” to raise drug prices 400%. Someone has to pay for all of this and it comes down to the patient.

While these millions of dollars are moving among industry, doctors and institutions, it’s the patients, including those with health insurance, that incur substantial costs associated with their care. There are higher rates of bankruptcy filing among patients with cancer. [2] In some cases, financial burden keeps the patient from needed medical care, including missed follow-up visits, and can hinder access to those medications that in fact may save lives. Researchers at the UNC Lineberger Cancer Center recently surveyed more than 1,000 people in 41 states, living with advanced, or metastatic breast cancer, revealing significant cancer-related financial burden particularly for uninsured patients. In another study, researchers at the University of Rochester reported almost 1 in 5 of the older patients surveyed with advanced cancer are experiencing financial difficulties due to the cost of treatment that are negatively affecting their care, quality of life, and mental health. Evidence from other studies suggests that financial burden after diagnosis is associated with overall distress, lower health-related quality of life, and satisfaction with cancer care. [3] Often cancer treatment leads to cardio toxicity and other comorbidities, which add to the already huge burden. Cancer tests and follow up visits keep the meter running for as long as the patient can maintain it.

How can the burden of financial toxicity be relieved?  It starts with figuring out how to bring meaning to the term “patient centered.” All stakeholders should put the patient’s wellbeing at the forefront. In the meantime, we can make certain everyone recognizes the problem and is working toward a solution. Discussions with providers may alleviate some of the burden. A team of researchers from Duke University Medical Center recently released results from a survey of more than 750 mostly “well-off” women diagnosed with breast cancer, and found that even among insured, financially secure women, nearly 16 percent said their diagnosis was financially catastrophic and  8 in 10  would prefer to have a cost estimate before beginning treatment. Even if patients want to talk about costs, they might be embarrassed, might believe that doctors do not have time or that a medical doctor is not the right person to discuss cost concerns. In their study on financial toxicity, Jagsi et al conclude “all physicians must assess patients for financial toxicity and learn how to communicate effectively about it. To cure a patient's disease at the cost of financial ruin falls short of the physician's duty to serve, and failure to recognize and mitigate a patient's financial distress is no longer acceptable.” [2,5]

While discussions between doctors and patients are important and may help alleviate some of the issues, they aren’t the solution. We all have to work to fix the system.  We can start by at least expanding access to coverage for treatment, as NBCC is working to do with its Metastatic Breast Cancer Access to Care Act but we also have to work to redesign the system to keep health care costs at a reasonable level. 

References

[1] Promoting Value, Affordability, and Innovation in Cancer Drug Treatment. A Report to the President of the United States from the President’s Cancer Panel. Bethesda (MD): President’s Cancer Panel; 2018 March.

[2] Jagsi R, Ward KC, Abrahamse PH, et al. Unmet need for clinician engagement regarding financial toxicity after diagnosis of breast cancer [published online July 23, 2018]. Cancer.  https://onlinelibrary.wiley.com/doi/10.1002/cncr.31532

[3] Kale HP and Carroll NV. “Self-Reported Financial Burden of Cancer Care and its Effect on Physical and Mental Health-Related Quality of Life Among U.S. Cancer Survivors.” Cancer.  2016;122:283-289

[4] Zafar SY, Abernethy AP. Financial Toxicity, Part I: A New Name for a Growing Problem. Oncology (Williston Park, NY). 2013;27(2):80-149

[5] Financial Toxicity Discussions an Unmet Need for Breast Cancer Patients. Oncology Nurse Advisor. July 2018
https://www.oncologynurseadvisor.com/breast-cancer/financial-toxicity-discussions-unmet-need-for-breast-cancer-patients/article/782882/

Three Studies Reveal Cancer Patients Face Serious Financial Hardship, Do Not Discuss Treatment Costs With Physician  ASCO News Releases September 24, 2018 https://www.asco.org/about-asco/press-center/news-releases/three-studies-reveal-cancer-patients-face-serious-financial

  1. UNC Lineberger Wheeler et al.  https://meetinglibrary.asco.org/record/166713/abstract J Clin Oncol 36, 2018 (suppl 30; abstr 32)
  2.  University of Rochester Mohile et al  https://meetinglibrary.asco.org/record/166563/abstract J Clin Oncol 36, 2018 (suppl 30; abstr 87)
  3.  Duke Cancer Cener  Greenup et al. https://meetinglibrary.asco.org/record/166585/abstract J Clin Oncol 36, 2018 (suppl 30; abstr 207)

other news



NBCC in the News

Reports of conflicts of interest and failure to disclose among oncology researchers and institutions have recently been in the news.  NBCC is following these issues and bringing the voice of the educated and engaged advocacy movement to the discussion. On September 13th, NBCC President’s Letter to the Editor was published in the New York Times.  Stay tuned for more from NBCC on these issues.

Auction Spotlight!

NBCC again this year is hosting an online auction to raise funds for our work. We have begun the auction with four items and will continue to add to the list.

Enjoy Lunch with Andrew Davis, Sony Pictures' President of Physical Production in LA

Meet Modern Family Casting Director, Jeff Greenberg & Tour the Set in LA

Meet Alice Waters & Enjoy Dinner for 2 in the Kitchen at Chez Panisse in Berkeley, CA

Twelve Hours of Recording Time in Studio 3 at EastWest Studios in Los Angeles

les girls, les girls 17, auction, les girls auction, modern Les Girls, Auction, les girls 17, les girls auction, andy daAlice Waters

Help End Breast Cancer: Sign Up for DNA.Land

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.

New York Gala- October 29, 2018 - The Pierre - New York

Join us on Monday, October 29th for the 23rd Annual New York Gala. We will honor Mark Alles, CEO, Celgene and two breast cancer grassroots advocates, Laura Avril and Marylinn Minor, for their commitment to Breast Cancer Deadline 2020®. This annual fundraising event should not be missed.  Find out further details or RSVP here.