• 2017 Advocacy Priorities - Making Your Voices Heard

    Advocacy

     

    Achieving Komen’s Bold Goal to reduce the current number of breast cancer deaths by 50 percent by 2026 will require a focused investment into breakthrough research and programs that ensure quality care for all. But not just by Komen. We cannot do it alone.

    While we are proud to be the largest nonprofit funder of breast cancer research outside of the federal government, the reality is biomedical research budgets at the National Institutes of Health (NIH) and Department of Defense (DOD) far exceed ours. The same goes for the incredible work our Affiliates are funding in their communities. While our community partners are helping thousands of women every single day, the Centers for Disease Control and Prevention’s (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP) is playing an equally important role in serving uninsured and underinsured women.

    To ensure these programs continue to be funded, Komen – as a patient advocacy organization with first-hand knowledge of how breast cancer touches local communities – actively engages policymakers on both sides of the aisle in our efforts to end breast cancer. Because from our point of view, there is no red or blue; only pink. As long as breast cancer continues to claim the lives of our mothers, sisters, and friends, our work is not finished. We will keep turning capitals nationwide pink in order to make our voices – and their voices – heard.

    This year, as in years past, we worked with our Affiliates, Advocates in Science and subject matter experts to select our 2017-2018 advocacy priorities. These policy issues – and real examples of women and men whose lives they’ve touched – are below. Their personal stories bring a vivid reminder of how breast cancer affects us all, and how important it is to keep engaging policymakers across the country.

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    Because from our point of view, there is no red or blue; only pink. As long as breast cancer continues to claim the lives of our mothers, sisters, and friends, our work is not finished. We will keep turning capitals nationwide pink in order to make our voices – and their voices – heard.

     

    2017 Susan G. Komen Advocacy Priority: Breast Cancer Research

    • Advocate for expanded federal funding for all biomedical research, especially breast cancer research conducted at the National Institutes of Health (NIH) through the National Cancer Institute (NCI).
    • Advocate for expanded federal funding for the Breast Cancer Research Program (BCRP) at the Department of Defense (DOD).

    “This would be the wrong time to reduce funding for breast cancer research. We've had the reduction in NIH funding for the last 10 years, and that's really hurt science. We've had 40 years of the war against cancer. And that's taught us an incredible amount about the basic understanding of how cancer develops, the genetics of it, the environment. But now we're at the point where we can really take that knowledge and really translate it and have impact.” – Komen Scholar and breast cancer researcher Dr. Adrian Lee | Pittsburgh, PA

    “There needs to be a national movement to increasing funding in biomedical research – specifically in breast cancer research – which would attract more young people to the field. The more brain power there is in the field, the better things are going to be.” – Komen Scholar and breast cancer researcher Dr. David Livingston | Boston, MA

     

    2017 Susan G. Komen Advocacy Priority: National Breast and Cervical Cancer Early Detection Program

    • Support federal and state funding for the Centers for Disease Control and Prevention’s (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP).
    • Support policies to modernize NBCCEDP state programs to expand eligibility and provide breast cancer screening and diagnostic services for additional populations.

    “I am a mammographer and I see the effects and benefits of screening mammography in women of every age and race. It is sad how we are finding more cancers in women younger and younger every day. Early detection is key!” – Cassandra | Novi, MI

    “Uninsured and under-insured women were able to receive screening and treatment through the State of Arizona’s Well Woman Healthcheck.  However, the program was extremely limited on resources.  Many more have been helped through the Affordable Care Act, but it was through advocacy, especially Komen's, that the women screened through WWHC finally were able to receive treatment for their cancers detected.” – Delores | Oro Valley, AZ

     

    2017 Susan G. Komen Advocacy Priority: Insurance Barriers

    • Advocate for policies to improve insurance coverage of breast cancer treatments, including those that would require oral parity, preclude specialty tiers, prevent step therapy protocols and limit out-of-pocket costs.
    • Advocate for policies to reduce or eliminate out-of-pocket costs for medically necessary diagnostic mammography.

    “In 2010, as a 46 year-old woman who had only one mammogram previously, I was diagnosed with stage IV breast cancer. I felt I was starting where some people end. I had insurance coverage. But battling over a $12,000 bill for an out-of-network bone scan wasn’t fun, and following up with each bill that floated in – from lab work to bone scans, MRIs, biopsies, deductibles not covered, etc. – that was messy and expensive.” – Roni | Sunset Beach, California

    “At the age of 37 (and insured), I found a lump in my breast and showed it to my doctor. After years of second & third opinions, I was told I had breast cancer. My 40th birthday was spent recovering from surgery. Our insurance company dropped us during the diagnostic process without informing us, and my husband and I were uninsured for more than a decade due to pre-existing conditions. We found out six weeks later, after the time passed when we would have been eligible for COBRA coverage. My battle with breast cancer cost us everything we’d worked so hard for, including our kids’ college funds.” – Lucy | Charleston, SC

     

    2017 Susan G. Komen Advocacy Priority: Clinical Trials

    • Evaluate state and federal policies to increase awareness, education and access to clinical trials for all patient populations.

    “I attribute my long-term survival and ‘cure’ to my participation in the clinical trial for Herceptin. Following genetic testing for BRACA2 (found to be positive), a double mastectomy and reconstruction, and six months of chemotherapy, I underwent 52 weekly infusions of Herceptin. Participating in this trial ensured that everything I went through to beat breast cancer would be permanently secured.” – Beth | Great Neck, NY

    “As my treatment continued to change, fighting with insurance to pay for the recommended chemo and radiation became a weekly event. I was unable to access any clinical trials as my insurance would not pay for my standard of care if I did.” – Kathy | Derby, KS

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