National Advocacy – Komen Goes to Washington, D.C.
From May 1-3, Susan G. Komen Headquarters hosted the 2019 Advocacy Summit in Washington, D.C. to prepare approximately 300 Affiliate staff, Board members, volunteers, survivors, researchers and other breast health advocates for legislative visits to members of Congress.
Communicating with federal and state policy makers is a key component of passing crucial breast cancer legislation and championing increased funding for research and screening programs. Through government action, broad, systemic, lasting change can be made in the fight against breast cancer. This means that Komen – as a patient advocacy organization with first-hand knowledge of how breast cancer touches local communities – must engage policymakers and government as partners in our efforts to end breast cancer forever. Susan G. Komen does not endorse one political party or support individual legislators, but rather advocates for policies that save lives. To advance our policy priorities, Komen works with our staff, volunteers, grantees, survivors, researchers and friends in communities across the United States, to ensure breast cancer is a priority among policymakers at the federal, state and local levels and to increase access to affordable, high-quality breast health and cancer care services.
All Komen advocates participated in a training that included information on Komen’s Public Policy and Advocacy team, an overview of Congress and the legislative process, a recap of the current political landscape, and an overview of Komen’s advocacy priority issues. These are the key messages that participants were going to discuss with their legislative officials during Congressional office visits:
Issue #1: Ensuring access to breast health services.
Without access to breast cancer early detection programs, many uninsured and underinsured women are forced to delay or forgo screenings, which can lead to late-stage breast cancer diagnoses. This delay can mean that a woman won’t seek care until the cancer has spread beyond the breast, making it much harder to successfully treat. The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) provides potentially life-saving breast cancer screening and diagnostic services to low-income, uninsured and underinsured women who do not qualify for Medicaid. Ensuring adequate funding for critical safety-net programs, like the NBCCEDP, is key to ensuring all women have access to vital screening services. Members of Congress were asked to preserve women’s access to breast cancer screening and diagnostic services by funding the NBCCEDP in the FY20 budget.
Issue #2: Investing in the cancer treatments of tomorrow.
The National Institutes of Health (NIH) and its National Cancer Institute (NCI) have played a role in every major cancer prevention, detection and treatment advance, while also delivering scientific breakthroughs for many other diseases, for decades. Since 2004, the NIH budget has failed to keep pace with medical inflation. As a result, fewer competitive research project grants are being awarded. Biomedical research is a wise investment that will not only defend Americans against cancer and other diseases, but also serves as one of our nation’s primary paths to innovation, global competitiveness and economic growth. Members of Congress were urged to make biomedical research an unwavering national priority by increasing funding for the National Institutes of Health in the FY20 budget.
Issue #3: Increasing access to diagnostic breast imaging.
Diagnostic breast imaging is typically non-invasive and often used as a follow-up test after an abnormal finding on a mammogram or clinical breast exam. They are pivotal in the process of detecting breast cancers early. If women are unable to afford the costs associated with diagnostic imaging, many might delay or forego additional tests to rule out or confirm a breast cancer diagnosis. This delay can mean that a woman won’t seek care until the cancer has spread beyond the breast making it much deadlier and much more costly to treat. According to a recent Susan G. Komen-commissioned study, an average patient cost for a mammogram is $234, and $1021 for a breast MRI. Members of Congress were encouraged to support legislation that increases access to medically-necessary diagnostic breast imaging by reducing out-of-pocket costs for patients. This legislation is called the Access to Breast Cancer Diagnosis (ABCD) Act, H.R. 2438 and would require insurance plans to equalize a patient’s out-of-pocket costs between a screening mammogram and a medically-necessary diagnostic imaging.
Issue #4: Reducing insurance barriers to treatment; passing oral parity legislation.
While intravenous (IV) drug therapy is the most well-known component of cancer treatment, an increasing number of cancer drugs today can be administered orally. The problem is that while intravenous therapy is covered under medical insurance, oral therapy is covered under pharmaceutical insurance. So in addition to having to meet the deductible for medical insurance, patients who need oral therapy would also have to pay high co-pays until they meet their pharmaceutical insurance deductible. This separation of coverage between intravenous and oral drugs causes oral drug costs to be much higher, which can be a factor when a patient is choosing their treatment path. Patients should not be forced to choose a less appropriate or effective treatment option simply because an insurer provides less coverage for a cancer drug that happens to be administered by mouth rather than intravenously. Patients and their physicians should be free to make treatment decisions based on what is best for that patient, not what the patient can afford. Members of Congress were urged to ensure breast cancer patients can access the treatments they need to save their lives by becoming a cosponsor of the Cancer Drug Coverage Parity Act, H.R.1730/S.741.
By the end of the day on May 2, Summit attendees had completed approximately 400 Congressional office visits, providing information on these four issues. Komen North Texas completed office visits with staff from Senator Ted Cruz, Rep. John Ratcliffe, Rep. Van Taylor, Rep. Michael Burgess, Rep. Mac Thornberry, and Rep. Jodey Arrington. The staff were very receptive to Komen’s messages and the Affiliate will continue to follow-up with the legislators, urging their support for these life-saving breast cancer issues and legislation. We are committed to ensuring our elected officials hear the voices of their constituents on these important matters and will keep you updated on the progress of the issues we raised at the Advocacy Summit.
If you’re interested in getting involved in our advocacy efforts or want more information, please email firstname.lastname@example.org.
Abenaa M. Brewster, M.D., M.H.S., is a tenured Professor in the Department of Clinical Cancer Prevention at the University of Texas MD Anderson Cancer Center (MDACC) and an adjunct in the Department of Epidemiology. She is a medical oncologist in the Nellie B. Connally Breast Center. Her research focuses on investigating the role that tumor genomics and genetic susceptibility play in influencing a woman’s risk and survival after a diagnosis of breast cancer. She is interested in disparities research, studying how ethnicity and obesity impact an individual’s risks to develop breast cancer.
With her research team, Dr. Brewster has also developed a framework for investigating the decision-making process of prophylactic contralateral mastectomy among women with sporadic breast cancer. She directs the MDACC’s Women’s Cancer Moonshot Prevention project that is focused on increasing the uptake of anti-estrogen preventive therapy among women with premalignant breast lesions. With her Komen Scholar grant, Dr. Brewster seeks to develop a noninvasive blood test to detect both symptom- and screen-detected triple negative breast cancers to stratify women for risk of recurrence to decrease overtreatment.