A group of empowered survivor-advocates from the Breast Cancer Coalition embarked on an early morning flight to Washington, D.C. on Saturday, April 30. Ours was the largest group attending the National Breast Cancer Coalition’s* Annual Leadership Summit. Joining survivor advocates from across the United States, we gained new insights from experts on topics such as:

• Getting to Value Based Cancer Care
• Cancer Research News – Critical Appraisal Skills
• New Horizons in Breast Cancer Metastasis Research
• How Do Review Committees and Scientists Use Evidence to Launch Trails

Round table discussions followed some of the presentations, which allowed us to ask questions of the scientists. Additionally, workshops were held for our newer advocates:

• Building Your Relationships with New Members of Congress
• Advocacy is the New Normal
• Congress 101: Navigating Capitol Hill for Advocates

The days went quickly, and over dinner we compared notes from the seminars. The excitement was palpable among the advocate group! Immersing ourselves in the latest information helped to prepare us for what was coming next. After three days packed full of research, our final day was spent on Capitol Hill, visiting seven Congressional offices. All fourteen of us packed into each office, where some shared personal cancer experiences.

We were advocating for HR 3183, the Metastatic Breast Cancer Access to Care Act, and two annual appropriations:

• The Congressionally-directed allocation or $150 million to the Department of Defense Breast Cancer Research Program (the DoD-BCRP), and the
• Preservation of the Medicaid Breast and Cervical Cancer Treatment Program.

Enactment of HR 3183 would waive the 5-month wait period for SSDI and waive the 24-month wait period for Medicare for someone diagnosed with metastatic breast cancer under the age of sixty-five who can no longer work due to their disease. These waiting periods have already been waived for those with ALS (Lou Gehrig’s Disease) and End Stage Renal Disease.

In each congressional meeting were survivor advocates from our group who have been impacted by each of these programs. We were there to covey the importance of these priorities. Two survivors in the room were treated with trastuzumab immunotherapy, a drug which has roots in the DoD-BCRP. Prior to this drug becoming available, those with a diagnosis of HER2 positive breast cancer had a poor prognosis. One survivor recounted her story of being diagnosed with stage II breast cancer without medical insurance despite working full-time. The Medicaid Breast and Cervical Cancer Treatment Program covered the expenses of treatment and alleviated the financial stress that was originally greater than the diagnosis. A third survivor-advocate recounted her metastatic diagnosis and the financial impact of carrying COBRA insurance during treatment, which illustrated the need for HR 3183 to be passed.

The Advocacy Committee of the Breast Cancer Coalition plays a major role in putting faces, voices, and stories behind legislation on local, state, and federal levels. We are currently working at the New York State level on safe cosmetic legislation. We meet monthly as a committee to discuss strategy for furthering our agenda to eradicate breast cancer. If this is something you’d like to be a part of, please email info@bccr.org.

* The Breast Cancer Coalition is an independent, local organization unaffiliated with any national group, including the National Breast Cancer Coalition. Many of our goals are the same and thus we support NBCC’s public policy agenda.

This story appeared in the Summer 2022 newsletter, Voices of the Ribbon.

Learn more about our Advocacy Committee.