• Metastatic Breast Cancer Update



    The last nine months since joining Susan G. Komen as President and CEO have been eye-opening – and I say that as a breast cancer survivor with a family history of the disease. We’ve made such significant progress in research, treatment, screening and education – a far cry from 36 years ago when our doors first opened.

    But one especially stubborn and difficult fight we must win is against metastatic breast cancer (MBC) – breast cancer that has spread beyond the breast to other organs (like the lungs, brain, liver or bones). An estimated 154,000 women and men are living with MBC in the U.S. today, and more than 40,000 people will die from MBC every year. It is unacceptable.

    We need to better understand why breast cancer spreads and how to prevent it; why some patients are impacted, sometimes years after their initial breast cancer diagnosis, while others aren’t; and how to treat MBC to help those living with the disease live longer and with a higher quality of life. Komen is fully committed to answering these questions – as quickly as possible – for all those living with MBC, and their loved ones.

    We know the need is urgent – that’s why we’ve set a goal to cut that number in half by 2026. We’ll accomplish this through continued funding for innovative research into metastatic and aggressive breast cancers, combined with a multifaceted approach to address the reasons why certain people and communities are more likely to die from the disease.

    Sometimes it can feel like the work doesn’t happen fast enough. We all wish we could end breast cancer tomorrow. But exciting progress has been happening – even in the short time since I got here! So, below are some exciting developments I wanted to share related to metastatic breast cancer – in research, patient support and treatment assistance, and by serving as a collaborator and convener. 


    Paula Schneider

    "We need to better understand why breast cancer spreads and how to prevent it; why some patients are impacted, sometimes years after their initial breast cancer diagnosis, while others aren’t; and how to treat MBC to help those living with the disease live longer and with a higher quality of life."


    Currently Komen supports 97 active grants, totaling more than $54.4 million for research focused on why metastasis occurs, how to detect it, and how to treat it more effectively. Fifteen of these grants support a clinical trial, and 71 of these grants are focused on treatment – identifying, developing, or testing new treatments for metastatic breast cancer. To date, we’ve invested more than $180 million in metastatic breast cancer research.

    We are beginning to see some early signs of progress from some of the research we have funded recently. For example:

    • In a Nature paper, Komen Scholar Hari Nakshatri, Ph.D. and team unveiled a new way to identify genetic mutations, which led to identifying mutations previously reported in brain metastases, but not primary breast tumors. This method could lead to early detection of mutations involved in metastasis and could reveal new treatment targets against metastatic breast cancer.
    • In a Cancer Cell publication, Myles Brown, M.D., a member of Komen's Scientific Advisory Board, and his team at the Dana-Farber Cancer Institute have found new gene mutations that cause estrogen receptor-positive (ER+) breast cancers to become resistant to standard therapies and metastasize. Identifying these targets could lead to new therapies for those facing ER+ metastatic breast cancer.
    • Many people with breast cancer unfortunately will become resistant to HER2-targeted therapies. But, recently published work from Komen Scholar Joe Gray, Ph.D., working with Dr. James Korkola and colleagues at Oregon Health and Sciences University, brings exciting new hope. In their Cell Systems publication, they show that resistance to lapatinib and neratinib treatment may be reversed by two current FDA-approved drugs (crizotinib for non-small cell lung cancer and pertuzumab for HER2-positive breast cancer). 
    • Predicting whether breast cancer will recur may one day be as simple as a blood test, thanks to pioneering research led by Joseph A. Sparano, M.D. and team at the ECOG-ACRIN Cancer Research Group. With funding from Susan G. Komen, they found that the presence of circulating tumor cells (CTCs) five years after diagnosis was a strong indicator of whether a patient would experience a breast cancer recurrence. They presented their findings at the San Antonio Breast Cancer Symposium in December. 

    Education and Patient Support:  While research is extremely important, we also help support women and men living with metastatic breast cancer today through a variety of national programs and locally through our network of Komen Affiliates in communities across the country. For example:

    • Our Komen Helpline served at least 515 callers with metastatic breast cancer (not all callers know or disclose their stage of disease) this year with information and support.
    • Our Treatment Assistance Program provided financial assistance to nearly 800 people living with metastatic breast cancer.
    • Komen Affiliates also hosted more than a dozen local metastatic breast cancer conferences, to connect people living with metastatic disease with researchers and clinicians. Four events were livestreamed and recorded for remote audiences so that more people living with MBC and their caregivers could benefit from the information, even if they couldn’t be there in person. We estimate that nearly 2,000 individuals were touched as part of these events. We are working to increase the number of these conferences over the next year.
    • We also worked over the past several months to enhance the information available on komen.org that supports those living with metastatic breast cancer, including new FDA approved treatments and a new page on Metastatic Breast Cancer Clinical Trials.

    Public Policy & Advocacy:  Komen has also been advocating for federal and state policies that directly impact those living with metastatic breast cancer.  For example:

    • Throughout the recent health care reform debates, Komen advocated for changes that would benefit breast cancer patients and ensure all women and men had access to, and received, high-quality and timely care.  We opposed efforts to restructure Medicaid and all efforts to remove key protections for patients, including discrimination based on pre-existing conditions and removal of lifetime caps.
    • As active members of the research advocacy community, Komen worked to secure significant increases in federal funding for biomedical research. The National Institutes of Health (NIH) received a $2 billion increase in the most recent federal budget.  Additionally, the Breast Cancer Research Program (BCRP) housed at the Department of Defense (DOD) received a $10 million increase.
    • We advocated federally and in nearly 20 states for policies to improve insurance coverage of breast cancer treatments, including those that would require oral parity, preclude specialty tiers, prohibit non-medical switching and limit out-of-pocket costs.
    • In Colorado, we successfully advocated for legislation that would prohibit an insurance carrier from requiring “step therapy” for covered individuals with metastatic cancer. Signed by the governor in April, the legislation ensures that treatment decisions are made by the patient and their provider, rather than requiring patients to try and fail on a “preferred drug” before receiving coverage for the originally prescribed drug.
    • Our California Affiliates successfully advocated for legislation that would ensure that an uninsured low-income woman, receiving treatment through the state-funded Breast and Cervical Cancer Treatment Program, is not denied coverage if she is diagnosed with a local recurrence (in the same breast). Previously they could be denied that care! This was an arbitrary statute that prohibited uninsured, low-income women from receiving necessary treatments.

    Convener and Collaborator:  One of the unique roles Komen can play in the effort to drive more research and provide vital support is by bringing people together. 

    • In February, Komen convened the third Big Data for Breast Cancer meeting in Silicon Valley with leading technology companies to discuss how big data could be leveraged to improve detection, treatment and management of metastatic breast cancer, among other issues.
    • We are a founding member and leader within the Metastatic Breast Cancer Alliance (MBCA). Among other things, over the last year the Alliance:
      • Reported that at least 150,000 women in the U.S. are estimated to be living with MBC (as of January 1, 2017), 75% of whom were initially diagnosed with an earlier stage of breast cancer and suffered a metastatic recurrence months to years later.
      • The MBCA study also found that median and five-year relative survival for women initially diagnosed with MBC is improving, especially among younger women.
      • Published key findings about the obstacles, opportunities and priorities for advancing research specifically into metastatic disease.
      • Has been developing MBC Connect™, the MBCA’s interactive MBC Patient Registry, to be launched within the next year.
    • We worked with the Reagan-Udall Foundation (RUF) for the Food and Drug Administration (FDA) to help develop the Expanded Access Navigator website to share resources and policies on expanded access to investigational therapies (which, for some, is the only treatment option left).
    • Komen, the European School of Oncology and Pfizer, along with physicians, patient advocates, and people living with metastatic breast cancer, produced the Global analysis of advanced/metastatic breast cancer: Decade report (2005–2015), published in April 2018. The report provides an overview on the status of metastatic breast cancer in several regions of the world, highlighting the gaps in care, resources, and support available.  https://www.thebreastonline.com/article/S0960-9776(18)30050-X/pdf
    • We are also part of the Metastatic Breast Cancer Vision 2025 Taskforce – the goal of which is to develop a series of recommendations to measurably improve care and outcomes for patients across the world with metastatic breast cancer over the next 10 years. 

    I look forward to sharing more important milestones in the future. In the interim, let’s use these updates as inspiration for the work that’s left to do. Because this fight is far from over. But, Breast Cancer: we’re coming for you.

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