Advocacy Insider from Susan G. Komen

October 2019 Updates Susan G. Komen Introduces the Center for Public Policy On September 18, Susan G. Komen launched the Center for Public Policy at the National Press Club in Washington, D.C. The Center for Public Policy is not a separate organization, but rather is new unifying identity for the critical work we are doing together to take action through public policy in the fight against breast cancer. This event included a discussion between stakeholders and patients to discuss barriers to breast cancer research, detection and treatment, and the role policy plays in creating solutions. You can still view the live-stream of the event here on our Facebook page and read Komen’s blog for more information on the launch of the Center for Public Policy. Federal Public Policy & Advocacy Updates Legislation October 13 is Metastatic Breast Cancer Action Day and we want to highlight a piece of legislation that directly impacts metastatic breast cancer patients. Metastatic Breast Cancer Access to Care Act – H.R. 2178 & S. 1374 There are currently more than 155,000 women and men living with metastatic breast cancer in the United States alone. While metastatic breast cancer can be treated, there is no cure. This is why metastatic breast cancer patients do not have time to wait for the treatments they need. Under current regulations, metastatic breast cancer patients are subject to a 5-month waiting period for Social Security Disability Insurance and a 24-month waiting period for eligible Medicare benefits. The Metastatic Breast Cancer Access to Care Act, will provide metastatic breast cancer patients access to the care they need by waiving the 5-month waiting period for Social Security Disability Insurance and the 24-month waiting period for eligible Medicare benefits. Take action! Appropriations Congress arrived back in Washington on September 9, with the Senate needing to pass all 12 appropriations bills, and then conference them with the House before the end of the fiscal year on September 30. As has been the case the last few years, they failed to do so. Instead, both chambers passed a continuing resolution (CR), which was signed into law by President Trump on September 27. The CR extends current funding levels until November 21, buying more time for negotiations. One of the main issues holding up the Senate’s work is the need to reach an agreement on the topline allocations for each of the 12 bills. The Labor-HHS bill—which includes funding for breast cancer research, screening, and treatment programs—will be particularly hard to come to an agreement on because of differing party priorities, Senate Republicans would like to divert $5 billion from its allocation towards building a border wall and Democrats want to include an amendment to overturn the Trump administration’s Title X family planning regulation. The best-case scenario is that the Senate can come to a consensus that will enable them to negotiate and pass all 12 bills, then move to reconcile them with the House in conference committee have them signed into law before November 21. If they are unable to do so, another CR will be necessary to avoid a government shutdown. 2019 Partners in Progress: Cancer Patient Advocates and FDA Public Workshop The 2019 Partners in Progress: Cancer Patient Advocates and FDA workshop is just one week away! Anyone interested in attending this public workshop either in-person or by web viewing must register on-line by 9 am on October 7, 2019 through this website and registration page. There is no cost to attend and lunch is provided to registrants. The workshop objective is to provide basic training on the role of the FDA and cancer patient advocates in oncology product development. This broad introduction to FDA regulatory aspects of oncology product development is most relevant to attendees with limited knowledge and experience in cancer product development and patient advocacy. Register today! Stage IV Stampede Susan G. Komen is pleased to again support and partner with METAvivor on their 2019 Stage IV Stampede October 10-11 in Washington DC. Join the MBC community for this event and make your voice heard on Capitol Hill! The Stage IV Stampede is part of a grassroots effort to bring volunteers together from across the country to Washington, DC, to advocate for advancing medical research and improving access to quality healthcare for individuals impacted by MBC. For more information and to register click here. State Public Policy & Advocacy Updates Metastatic Breast Cancer Action Day – October 13, 2019 We hereby proclaim, October 13, 2019 as “Metastatic Breast Cancer Action Day”. On this day, we ask you to become informed and aware of metastatic breast cancer and its impact on our nation.  Komen submitted proclamation requests to state and local leaders across the county in support of Metastatic Breast Cancer Action Day to spread the word about the impact policy has on those living with MBC and the action needed to support increased research funding and expand programs that reduce barriers to breast cancer screening, detection and treatment for underserved women. General Public Policy & Advocacy Updates Advocate Spotlight – Jennifer Cortes Jennifer Cortes is the Mission & Strategic Outreach Coordinator at Susan G. Komen Louisiana. She said she sees her role at the affiliate as being to help others the way she helped her mom with the issues she faced during treatment. Through her work at Komen Louisiana and involvement with Komen’s public policy and advocacy, Jennifer is aware of how local resources can't address all barriers, which makes working with elected officials to eliminate these barriers to care is crucial to saving lives. If Jennifer could give one piece of advice to anyone working with their legislators it would be, “Listen with the intent to understand. Whether you're speaking with someone who supports your cause or someone who may be against it, that person may offer a new perspective on sharing your story or on buying in someone who may not initially support it...also, if you're going to the Capitol, wear comfortable shoes.” When she is not advocating on behalf of breast cancer patients in Louisiana and across the country, she is planning James Beard food tours for my family and friends throughout the United States and cheering on the New Orleans Saints.

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