Each year, NBCC’s grassroots Board of Directors determines our legislative and public policy priorities. It is a difficult process. We review the landscape of pending and proposed legislation, analyze recommendations from our membership and others, and independently identify issues that meet our criteria. To become a priority, an issue must be overarching, one that, if addressed, would have a major impact on breast cancer and it must be one that can be solved through legislation or other public policy approaches.
The Board also reviews issues in the context of the goal of our Breast Cancer Deadline 2020® campaign and our mission to end breast cancer. The 2017 Legislative and Public Policy Priorities outlined below will serve as the foundation of our legislative advocacy work throughout the year, and along with grassroots mobilization efforts, provide the context for the action alerts sent to our network.
Distribute NBCC’s 2017 Legislative and Public Policy Priorities to your networks and keep them on hand to use in your NBCC legislative advocacy work. As we develop specific strategies to advance our priorities, your prompt attention and action on alerts will be critical to our success.
$150 Million for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2018: As a result of NBCC’s grassroots advocacy, the DOD BCRP was created in 1992 to “eradicate breast cancer by funding innovative, high-impact research through a partnership of scientists and consumers.” The DOD BCRP is widely viewed as an innovative, unique, and efficient medical research model which has proven to be accountable to the public and has produced extraordinary results. NBCC seeks continued funding for this successful program.
Guaranteed Access to Quality Care for All: Ensuring access to quality, evidence-based health care has been a top priority of NBCC for many years and is an essential component of Breast Cancer Deadline 2020®. Prior to the passage of the Affordable Care Act (ACA), the NBCC grassroots Board of Directors approved a Framework for a Health Care System Guaranteeing Access to Quality Health Care for All which built on NBCC’s Principles for Quality Care. In 2010, NBCC endorsed and advocated for the passage and implementation of ACA which marked important steps forward in access to quality health care for individuals with, and at risk of, breast cancer. The Coalition opposes and will work to defeat any and all efforts to repeal the ACA or replace it with something less expansive. In addition, NBCC remains committed to protecting vital existing programs such as the Medicaid Breast and Cervical Cancer Treatment Program (Medicaid BCCTP) and critically examining any proposed changes to programs such as Medicare in order to determine the impact they would have on this population of women.
Ensuring the Participation of Educated Patient Advocates in all Levels of Health Care Decision Making: NBCC continues to work to ensure that educated patient advocates who represent a constituency have a meaningful “seat at the table” in all levels of health care decision making which affects their lives.
Legislation from the GOP that seeks to repeal the Affordable Care Act, if passed, will cause millions of Americans to lose their healthcare coverage and will harm women and men with breast cancer and their families. For those who depend on the ACA, restricting their access to quality and affordable healthcare can mean life or death.
The proposed legislation would restrict access to Medicaid, replace subsidies with tax credits for low and middle income individuals and families, and encourage the use of health savings accounts. For families and individuals who may be living paycheck to paycheck, health savings accounts are a luxury, while subsidies are a necessity that allows access to more affordable coverage. The bill will decrease the assistance people receive to offset the cost of premiums and people with serious illnesses will be impacted the most. Because they will be unable to afford the coverage they need, women and men living with breast cancer will have two choices, forgo lifesaving treatment or go into debt. “
The next iteration of health care law should expand access, while reducing costs for individuals who can least afford it. Access to affordable healthcare is a right for all, regardless of income level. The proposed legislation seems to reflect a belief that healthcare is a privilege – for those who can afford it,” said Fran Visco. The Affordable Care Act has saved lives. Moreover, while it is true the draft legislation maintains some protection for those with pre existing conditions, it does so with significant restrictions and does not help the millions who will not be able to afford healthcare under the new law. What will happen to the women and men with breast cancer who depend on the ACA?
To that end, we are collecting stories from women and men with breast cancer who have been impacted by the Affordable Care Act and sharing their stories here. If you have a story you’d like to share, or if you’re involved in ACA related events and you want to share photos or video from events, please send an email to email@example.com or upload your video here.
NBCC Hosted Webinar: ‘The Promise of a Blood Test for Early Stage Breast Cancer’
There is much talk about a blood test to detect cancer. What would that look like? Can we have a blood test that would accurately detect recurrence of cancer? Metastatic progression? On February 17th, NBCC hosted a webinar entitled “The Promise of a Blood Test for Early Stage Breast Cancer”, presented by David Walt, PhD and Rachel Buchsbaum, MD. Dr. Walt is the recipient of an Innovator Award from the Department of Defense Breast Cancer Research Program to develop ultra-sensitive techniques at the single-molecule and single-cell levels to detect breast cancer. This work is based on the hypothesis that breast cancer, including early tumors, secrete proteins in the blood stream that can serve as biomarkers.
The presenters discussed technology that could lead to the identification of personal biomarkers. This is early stage work. A personalized biomarker level would be determined by comparing an individual’s baseline obtained while healthy, with the serum assay obtained during a screening. The researchers suggest that this blood test may eventually detect early tumors and be used as a tool for noninvasive monitoring to detect recurrence and metastases. The research is ongoing, and not available for diagnostic use with patients yet.
There are many issues surrounding blood tests that must be addressed. We know that screening a healthy population results in significant overdiagnosis and overtreatment. With a blood test, will we just expand the number of people considered “patients” or “at risk”, with no real, effective and safe intervention to offer them? Can we detect lethal breast cancer with a blood test versus those cancers that will never become a real problem? These are concerns that Drs. Walt and Buchsbaum share and we continue to address them with researchers.
Application 2017 Project LEAD® Institute
Want to help set the research agenda for breast cancer? Become a leader in the field of science advocacy? Make a difference? The Project LEAD® Institute is a six-day intensive science course for breast cancer advocates covering the basics of cancer biology, genetics, epidemiology, research design and advocacy. The course provides a foundation of scientific knowledge upon which participants can strengthen and empower themselves as activists. Taught by renowned research faculty, this is a unique opportunity for those interested in learning more about working as an NBCC research advocate.
Tuition is free and includes all workshop materials and meals for five days. You must be an NBCC member to apply. Applicants can also apply for need-based scholarships to assist with lodging and travel expenses. Accepted participants must attend the entire course. Click here to get further information or to register.
The deadline to submit completed applications is April 18, 2017. Questions? Please email ProjectLEAD@BreastCancerDeadline2020.org
Artemis Project® 2016 Meeting Report Now Available
In 2010, NBCC launched Breast Cancer Deadline 2020®, a strategic plan of action that is designed to identify by 2020 the knowledge, approaches and tools needed to end breast cancer. The research component, Artemis Project®, is a collaboration of researchers, advocates, and other key stakeholders who design and implement research plans that focus on two areas:
• Primary Prevention: How do we stop people from getting breast cancer?
• Prevention of Metastasis: How do we stop people from dying of breast cancer?
The 2016 Artemis Project® meeting included more than 40 participants, including advocates and scientific expertise ranging from immunology, biophysics, and genetics, to molecular biology and clinical oncology. You can read the report from the 2016 meeting here.
Help Prevent Metastasis: DNA.LAND
Our work on the breast cancer questionnaire that is part of DNA.Land is almost complete. You will recall that the breast cancer component of DNA.LAND is a project of NBCC's Artemis Project®. Individuals who have had their DNA tested by consumer genomics companies such as FamilyTree DNA, 23andMe and Ancestry.com share their DNA reports through the DNA.Land website and complete the clinical questionnaire developed through NBCC’s Artemis Project. NBCC will work with researchers to utilize the data for meaningful projects, such as determining the genomic makeup of breast cancer that will progress to metastasis.
If you are interested in submitting your information, we encourage you to have your saliva test now and stay tuned in the next few weeks for our official launch notification on where to upload the data that you receive.
Join NBCC for the first Women with Balls event in NYC!
NYC Women with Balls bowling fundraiser will be held at the Bowlmor Lanes Times Square on May 2nd, 2017. 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. The event will feature food, drinks and prizes. And of course, bowling.
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 a raise minimum of $1,800 to play.
3. Individuals who raise a minimum of $450 will be paired with a team.
Interested in being a 2017 Women with Balls Event Sponsor? Download the Sponsorship Opportunities document and the Fact Sheet to learn more! For more information and to register your team, go to: www.breastcancerdeadline2020.org/wwbnyc2017 . If you are unable to attend donate, contact Sharnita Goins at 202-973-0569 or SGoins@breastcancerdeadline2020.org.
Come to learn, to network, to make friends and make a difference. Join us at the Renaissance Capital View hotel in Arlington, Virginia. The Summit is filled with 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.
At the 2017 Advocate Leadership Summit, we will continue to build on the considerable strengths of leaders and visionaries who are working at every level to achieve Breast Cancer Deadline 2020®. This extraordinary meeting will offer you ways to:
• Network with the most highly-committed and motivated group of leaders ever assembled in the world of breast cancer;
• Interact with scientists, thought leaders, innovators and visionaries in small, intimate groups;
• Get dynamic, world-class, advanced leadership training;
• Hear about research on prevention and breast cancer metastasis as well as on cutting-edge topics in the areas of systems change and health care delivery;
• Understand the Administration and Congress in preparation for Lobby Day;
• Learn best practices from other leaders who are implementing their state and individual action plans.
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 firstname.lastname@example.org for more information. You must have attended a previous Advocate Leadership Summit (2013-2016) to qualify for a travel scholarship.
HOTEL: Reservations can be made by clicking here or by contacting the hotel at 1-800-228-9290. Be sure to mention National Breast Cancer Coalition to get the special room rate of $241 +tax per night. If you are interested in requesting a roommate, click here.
Enjoy a Night of Laughter and Support NBCC!
NBCC has proudly joined forces with GFour Productions, producer of Menopause The Musical®. Through May 1st, 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 www.MenopauseTheMusical.com