When Janice Parker’s mother was diagnosed with breast cancer, she saw the family rule take full effect – “what happens in the home, stays in the home.” Her family did not discuss the diagnosis with anyone – not even their closest relatives. Janice’s aunt never knew she was at a higher risk of breast cancer due to her family history because no one ever told her.
When Janice was diagnosed with stage 0 breast cancer, or ductal carcinoma in situ (DCIS), in 2012, her first instinct was to uphold the family rule and keep her diagnosis a secret. Now, as a 10-year breast cancer survivor, she points to one pivotal moment that changed her perspective.
“I had no intentions of telling my story until one day I saw a woman on our local news station telling her breast cancer journey,” Janice said. “I thought, ‘How bold of her to be on TV telling her story.’ There was something inside of me that said, ‘You were diagnosed for a reason. You need to tell your story so other people can understand their risk of breast cancer and the importance of sharing your family history.’”
Janice later connected with the woman from the news story, who told her about Susan G. Komen’s Circle of Promise advocacy group and invited her to a meeting for the local Peoria, Illinois chapter. Circle of Promise unites and empowers Black women across the U.S. to provide breast health education, outreach and survivor support in their local communities.
Circle of Promise is just one example of Komen’s longstanding commitment to driving a health equity revolution at the state and ultimately federal level, said Molly Guthrie, Komen’s Vice President for Policy & Advocacy. The Susan G. Komen Center for Public Policy focuses on efforts to empower people and policymakers with knowledge, connect advocates together and mobilize people to act for lasting change.
“Within the Center for Public Policy, I truly feel that everything we do is through a health equity lens,” Molly said. “Our goal is to create an equitable health care system for all – no matter your age, your race, your gender identity, your stage of cancer or your socioeconomic status. Every single person should have access to high-quality, affordable health care.”
While much of the Center for Public Policy’s work is focused on specific policy work and initiatives, Molly emphasized the vital importance of having people like Janice serve as breast health advocates within their local communities.
“We know it’s vitally important to have advocates that reflect the communities we serve within the breast cancer population,” Molly said. “Unfortunately, for far too long, this has not been the case.”
In response, Komen developed Speak Truth to Power: Stand Up, Speak Up, a training program with a standard, relevant and culturally responsive curriculum for state-level advocacy. Komen launched the program in California and Texas, two states that make up a significant portion of breast cancer diagnoses in the Black community, and added an event in Illinois in 2022.
Janice learned about Speak Truth to Power through an invitation from her local Komen office and signed up to attend the Illinois event, thinking the program would give her “more tools in the toolbox to help with local outreach.”
“When I attended Speak Truth to Power, I was blown away. We were so empowered and walked away with an action plan to be better about the way we advocate,” Janice said. “I learned that advocacy is power. I also learned that we must make greater efforts to address the systemic inequalities in health care. I learned that there is more racism and bias in health care than I knew about, but I also learned ways I can help advocate for people I work with on how to address those inequalities.”
Support for Genetic Counseling & Testing
The Center for Public Policy works to address inequities in the Black community by supporting legislation that can help bridge the gap for underserved populations. Black women are less likely to be referred for genetic counseling and genetic testing than white women, which Komen is addressing through needed policy change, including by supporting the Reducing Hereditary Cancer Act, which Molly expects to be reintroduced in Congress this year.
The bill provides for Medicare coverage of genetic testing for individuals with a personal or family history of a hereditary cancer gene mutation or suspected history of hereditary cancer, as well as for associated coverage of risk-reducing surgeries and screenings.
The Center for Public Policy is also exploring state legislative options that would eliminate the patient costs associated with genetic counseling and testing, including in Illinois.
“The first step is ensuring people can afford the testing they require, but we also want people to be able to receive guidance and understand their test results and breast cancer risk from a genetic counselor so they know what it means and potential next steps,” Molly said. “We look forward to implementing policy change in states like Illinois that can serve as a role model for work across the rest of the country.”
Janice knows firsthand the importance of genetic testing and genetic counseling. She underwent testing and counseling in 2012 after she was diagnosed with breast cancer thanks to a referral from her breast surgeon and encouraged her daughter to pursue testing as well. No one in Janice’s family had heard of genetic testing and genetic counseling at the time.
When Janice’s mother-in-law was diagnosed with breast cancer in 2022, the family rallied around her to ensure she could afford genetic testing and genetic counseling – with the old family rule a distant memory.
“Genetic testing is so important for me personally because my father is a four-time cancer survivor. My genetic testing told me about a gene mutation that was linked to a cancer he had,” Janice said. “I’m very passionate about this topic and excited for all Komen is doing to ensure that all people can be informed about their breast cancer risk and make more educated decisions about their treatment.”
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