November ADVOCACY INSIIDER from the Susan G. Komen Foundation

November Updates Federal Public Policy & Advocacy Updates Komen Comments on Male Breast Cancer: Developing Drugs for Treatment In late August, the Food and Drug Administration (FDA) published a draft guidance entitled, “Male Breast Cancer: Developing Drugs for Treatment.” The draft guidance provided an opportunity for Komen to submit feedback on proposed recommendations on the development and labeling of cancer drugs, including biological products, for the treatment of male patients with breast cancer. The draft guidance also recommended the inclusion of male patients in clinical trials of breast cancer drugs. You can read Komen’s comments to the FDA here. Stage IV Stampede & Twitter Takeover On October 11th, Komen joined METAvivor for its 2019 Stage IV Stampede on Capitol Hill. The Stage IV Stampede is part of a grassroots effort to bring volunteers from across the country to Washington, DC, to advocate for advancing medical research and improving access to quality health care for individuals impacted by metastatic breast cancer (MBC). This year Komen Advocacy Advisory Taskforce member, Kelly Shanahan joined us for a Twitter Takeover while she visited with Congressional members and their staff. Kelly shared her story of what it is like living with MBC and how legislation such as the Cancer Drug Parity Act can help patients access the line of treatment they need. Thank you to Kelly for sharing her story! Appropriations Last month the House and Senate failed to come to an agreement on spending bills for the next fiscal year and passed a continuing resolution (CR) that extends current funding levels until November 21st, meaning Congress has just a few more weeks to negotiate spending bills for fiscal year 2020. Unfortunately, it appears they are no closer to a deal than they were a month ago and it is likely they will need to pass another short-term CR to avoid a shutdown. As a reminder, the main points of contention between the House and the Senate continue to be the top-line funding levels for each of the 12 bills, also known as the 302(b) allocations. Specifically, the Labor-HHS bill—which includes funding for breast cancer research, screening and treatment programs—will be especially challenging because the Senate Republicans would like to divert $5 billion from its allocation to building a border wall. Congressional and White House leaders met earlier this week and it appears they are on the same page about not wanting to pass a long-term CR when the current one expires later this month. They are considering drafting another CR for a few months in hopes they could reach agreement on bills for the rest of the year.  The leaders from both parties said they will continue negotiating and hope to have the appropriations process wrapped up by the end of the year. State Public Policy & Advocacy Updates Ohio Advocates gathered at the Ohio Statehouse on Wednesday, October 23rd for the 3rd MBC Day of Action to thank legislators for hard fought expansions in access to and funding for Ohio’s Breast and Cervical Cancer Project. Additionally, they asked for support of newly introduced patient protection legislation in Ohio and advocated for expansion of Ohio’s BCCP Medicaid Treatment Program. Advocates held more than 25 meetings with key members of the legislature to educate them on the needs of BCCP patients. During the meeting, the “Tori Geib Courage in Action Award” was introduced, honoring Tori Geib, an MBC advocate who has been living with MBC for more than three years. This award was given to Ohio Governor Mike DeWine for all he has done to increase access to health care for breast cancer patients. Texas Thanks to all of our Komen Advocates who got out there and voted "yes" for Proposition 6. The Cancer Prevention Research Institute of Texas (CPRIT) has been funded for another 10 years! Texas is the second-largest funder of cancer research in the nation, thanks to CPRIT, a groundbreaking cancer research and prevention program. Since its founding, CPRIT has provided cancer prevention and treatment services to thousands of Texans who otherwise would do without, funding more than 5.7 million prevention services for Texans in all 254 counties and creating 110,000 jobs in the state. Thank you to everyone who voted "yes" to keep this life saving program funded! General Public Policy & Advocacy Updates Advocate Spotlight – Susan Brown Susan Brown, M.S., R.N. is the Senior Director of Education and Patient Support at Susan G. Komen Headquarters, where she has worked for more than 15 years! Prior to becoming involved in Komen Advocacy, Susan’s experience in advocacy was through voting. She wanted to play a larger role when she learned more voices mean more impact. Susan is passionate about advocating for breast cancer research funding, support for clinical trials and trial enrollment, coverage for diagnostic services and insurance issues. Susan’s advice to anyone wanting to get more involved in public policy and advocacy would be, “Do it. Learn and listen from those with more experience. Then model what you have learned and pass those learnings and experience to others.”

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