NBCC’s 2018 Advocate Leadership Summit

 

by Jessica Ramirez, VBCF Board Member

Attending the National Breast Cancer Coalition’s 2018 Advocate Leadership Summit in Washington, DC in April 2018 was a powerful experience for me. Not being a breast cancer survivor myself but knowing the impact this disease can have on a woman and her family, my main goal was to lobby for priorities that will help make life easier for those living with this diagnosis. However, the conference far exceeded my expectations and I was met with a weekend packed full of interesting presentations on current research projects, educational breast cancer facts and figures that I did not know and passionate advocates from every demographic wanting to come together and make a positive difference.

The summit concluded on Capitol Hill with advocates lobbying for key legislative and public policy priority issues that included: Department of Defense Breast Cancer Research Program funding, fast-tracking benefits for metastatic breast cancer survivors, preservation of the Medicaid Breast and Cervical Cancer Treatment Program for low-income women, guaranteed access to quality care for all and ensuring the participation of educated patient advocates in science research and all levels of health care.

2018 Legislative and Public Policy Priorities

The National Breast Cancer Coalition (NBCC) is a collaborative made up of breast cancer survivors, activists, researchers, policymakers and patient organizations that come together to help end breast cancer through the power of action and advocacy. One of the main goals of NBCC is to increase federal funding for breast cancer research and monitor how research funds are spent. What’s interesting about NBCC is that it doesn’t just advocate for any kind of breast cancer research funding but specifically for “high-risk, high-return” research that is conducted through an innovative partnership between scientific researchers and educated, trained, consumer advocates. This is why, chief among its legislative priorities, the NBCC advocates for $150 million for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2019. The DOD BCRP is successful because it is: innovative and unique, efficient, transparent and accountable to the public and has produced extraordinary results. Despite the success of the program, there’s still a need to fund continued research as we still don’t know how to prevent or end breast cancer.

The second legislative priority is to pass a bill that would waive the 24 month waiting period for Medicare eligibility and the 5 month waiting period for Social Security Disability Insurance benefits for individuals living with metastatic breast cancer. Metastatic breast cancer is cancer that has spread from the breast to the bones, lungs or other distant parts of the body and unfortunately, has no cure. The average life expectancy for those with this advanced breast cancer is only about three years, therefore, it’s easy to see why the waiting periods to receive critical benefits is problematic. When one is fighting for her life and undergoing treatment, the last thing she needs to worry about is how she’s going to pay for her medications or other bills or whether or not she’s going to lose her house. This bill would simply remove some administrative red tape and allow patients to receive the benefits they are entitled to receive.

The third legislative priority is to preserve funding of the Medicaid Breast and Cervical Cancer Treatment Program (BCCTP). The Breast and Cervical Cancer Treatment Act in 2000 helped expand access to health care for thousands of underserved women. This Act provided Medicaid coverage for uninsured or underinsured women who were diagnosed with breast or cervical cancer through a federal screening program. Prior to this, women were diagnosed through the screening program but weren’t treated for their cancer because they had no Medicaid coverage and weren’t able to afford private insurance. This is a critical program to ensure that low-income, uninsured women get access to the healthcare that they need and get treatment for breast or cervical cancer. Current efforts to reduce funding for Medicaid threaten the future of this program, therefore, it’s imperative that lawmakers oppose any efforts to strip funding for this program.

Conclusion

Breast cancer awareness is everywhere. However, it wasn’t until my own family was affected by a breast cancer diagnosis that I realized that my knowledge of breast cancer was superficial at best and that these so-called “pink” campaigns, while well-known and trendy, don’t necessarily relay the full story about breast cancer and its impact. One of the biggest takeaways I had from this conference was that even though we’ve invested millions of dollars into research, even though we’ve had huge medical advancement through the years, even though we have mammography, ultrasounds and MRIs for earlier detection, none of this has led to a significant decline in the incidence of late-stage disease nor has it had a significant impact on the number of women dying from breast cancer (NBCC, Breast Cancer Facts & Figures). How is this possible? As a community of survivors, activists, educators, researchers, etc.—we have a lot more work to do. It is up to us to educate the public and policymakers about the continued need for breast cancer awareness and research and to advocate for policies that help women overcome a breast cancer diagnosis. We owe it to ones that came before—those grandmothers, mothers, sisters, and daughters—to do everything in our power so that no one has to hear the words, “You have breast cancer” again.

For more information about NBCC, visit: http://www.breastcancerdeadline2020.org/about-nbcc/