Personal Stories, Advocacy
By: Sean Tuffnell
Advocacy Summit 2019
On a quite day in May, the halls of Capitol Hill were awash in a sea of pink as more than 250 breast cancer survivors, patients and advocates descended on the nation’s capital to urge Congress to support a variety of issues important to women and men impacted by breast cancer.
The week began with a special session called “Speak Truth to Power”, where Komen invited dozens of African-American survivors and community stakeholders from across the country for a day and a half of training on how to advocate for yourself and others. Attendees learned about the power of sharing one’s experience and the importance of building relationships with policymakers.
They were joined midweek by fellow advocates, new and experienced, to prep for a marathon day of meetings. The group was led by Paula Schneider, Susan G. Komen’s CEO, and celebrity home life expert Sandra Lee, both of whom are breast cancer survivors. Schneider and Lee provided the keynote “Conversation,” where Lee shared her breast cancer journey and her passion for advocacy, especially for measures to remove financial and time barriers to needed care. The conversation hit an emotional high point during a Q&A with attendees, where Lee shared the fear of recurrence that all people who have been touched by the disease and are currently living “with no evidence of cancer” – “cancer never really goes away, it is always with you.”
Breast cancer advocate Sandra Lee
The next day the Komen advocates stormed the Hill to drum up support for a variety of measures, including a new bill introduced earlier that week that for the first time would address the high-cost of diagnostic exams. The bipartisan “Access to Breast Cancer Diagnosis Act,” introduced by Rep. Debbie Dingell (D-MI), would increase access to medically-necessary diagnostic breast imaging by reducing out-of-pocket costs for patients. The legislation is co-sponsored by Reps. Colin Allred (D-TX), Brian Fitzpatrick (R-PA), Peter King (R-NY), Cathy McMorris Rodgers (R-WA) and Debbie Wasserman Schultz (D-FL).
This bill is important because while millions of women across the country have access to free screening mammography after the passage of the Affordable Care Act (ACA), follow-up exams for those women with suspicious findings on their mammograms (which can be 10% of all women screened), may result in thousands of dollars in out-of-pocket costs. For many people, undergoing a series of diagnostic exams is required, and for those who have previously been diagnosed with breast cancer, diagnostic tests are often recommended annually rather than traditional screening.
“Women across the country are delaying, or even foregoing, needed diagnostic exams due to the high and varying out-of-pocket costs,” said Schneider. “It does women little good to know they have something suspicious if they can’t afford the test(s) that will explain the finding or confirm the need for a biopsy.” “Solving this barrier to care is key to saving lives,” added Lee. “No woman should be put in the position of knowing something is wrong, but unable to do anything about it because of the cost. We can, and must, do better for the women of this country.”
From an early detection perspective, a screening mammogram would not be considered successful if the follow-up diagnostic imaging were not preformed to rule out breast cancer or confirm the need for a biopsy. The systematic use of breast cancer screening and follow-up diagnostics has led to significant increases in the early detection of breast cancer in the past 20 years.
In addition to the new legislation, Komen advocates stressed the importance of ensuring parity between insurance coverage of oral chemotherapy, which often is governed by prescription drug benefit rules, and traditional IV treatments, as well as expanding the government’s commitment to funding breast cancer research and vital safety-net programs, such as the National Breast and Cervical Cancer Early Detection Program.
The day concluded with an evening reception where Lauren Marquette, executive director of Komen Ozark, was recognized for her leadership and advocacy in Arkansas to pass oral parity legislation.
The week concluded with a panel discussion about the importance of state advocacy, and a powerful speech by Tori Geib, a young advocate from Columbus who is living with metastatic breast cancer. Tori, who was diagnosed with MBC in 2016 the week of her 30th birthday, shared with her fellow advocates what it’s like to live with MBC.
“The biggest thing initially is that you’re dealing with grieving this life you just lost and the idea of what your life would be like. Your peers don’t understand. I had to quit my job as a chef two years out of school,” she relayed. “When I learned my cancer wasn’t curable, I just said ‘If I don’t live long, I want to make sure I live my best life.’ ”
She concluded by noting that the people like her living with MBC who were able to make the trip to D.C., were the exception. Many are too sick to travel. Most won’t live long. It is imperative that the rest of the breast cancer community, particularly those with early stage breast cancer, stand by them and speak for them.
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