Susan G. Komen February Newsletter

 

DONATE Lyndsay’s Story: Inspiring and Empowering Women with Breast Cancer When Lyndsay Levingston was undergoing treatment for breast cancer, she didn’t see women who looked like her or told stories she could relate to. Knowing the power of storytelling, Lyndsay decided to share her own story to inspire and empower others. READ LYNDSAY'S STORY Increasing Access to High-Quality Health Care is Important to Achieve Health Equity  Susan G. Komen understands the importance of health equity for all and is working to drive change, so that Black communities have access to high-quality breast health care. LEARN MORE ABOUT KOMEN'S HEALTH EQUITY WORK Know Your Risk of Breast Cancer Knowing your family health history and your risk of breast cancer may help you save your life or the life of a loved one. Komen has resources available to help you understand your risk of breast cancer. Knowledge is power. READ MORE Get Involved Komen launched a new, interactive course for patient navigators called “Navigating Black Patients Through Racism & Bias in Health Care.” It can be taken on its own or as a part of Komen’s Patient Navigation Training Program. The hour-long course includes tools and resources to better advocate for Black patients. Please reach out to navigationnation@komen.org to enroll or if you have questions. This message was sent to cmsimone1@gmail.com For breast health or breast cancer information, please call the Breast Care Helpline: 1-877 GO KOMEN (1-877-465-6636) | helpline@komen.org Manage your email preferences | Unsubscribe | Privacy Policy Disclosure | About Susan G. Komen © 2021 Susan G. Komen | 13770 Noel Road, Suite 801889, Dallas, TX 75380

News from Komen New Orleans

 

Dear Komen Friends, We can take a look back at the past many months that tested our ties to one another and say, through it all, we are truly one community. All of us, including Susan G. Komen New Orleans, are doing some things differently in the post COVID 19 era and Hurricane Ida recovery. In response to the economic impact of the pandemic and the evolving needs of breast cancer patients across the country, Susan G. Komen announced a national reorganization to centralize operations and unify programs across the organization. This includes Komen New Orleans, which is now better able to collaborate with Komen colleagues across the country for maximum impact. We will continue to: Support patients through Komen’s unified, patient centered mission programs Help patients navigate a fragmented and confusing health system while overcoming barriers to receiving timely and quality health care Invest in breakthrough research and clinical trials to discover new ways to detect, prevent and treat breast cancer Advocate for compassionate public policies to better support patients and their families And yes, we will continue to host our annual Komen Race for the Cure® October 23rd, this year virtually In addition to uniting as a single entity, Komen is leveraging technology to create a virtual office, enabling us to reduce expenses while ensuring we have team members in communities all over the country. This means that as of September 30, 2021, our office is 100% virtual. Do not worry - we are not going anywhere. We will remain active in our community. And now, no matter where you live, you can access Komen’s patient care services and fundraising events. While we’re making some changes to operate more efficiently and expand our support, some things will never change. We remain committed to supporting people facing breast cancer today. We will continue to serve as a trusted and valued partner throughout a person’s breast cancer journey. Most importantly, our vision remains the same: A world without breast cancer. Your Komen Team in Louisiana, Julie Voss Regional VP, South Central jvoss@komen.org 972.855.1619 Susan G. Komen Attn: New Orleans LA300 P.O. Box 801889 Dallas, TX 75380 For general inquiries: 1-877 GO KOMEN info@komen.org

December Advocacy Insider from the Susan G. Komen Foundation

December 2019 Updates Take Action for the Breast Cancer Research Stamp The Breast Cancer Research Stamp is set to expire at the end of this year and your voice is needed to help ensure that this critical program remains available. Legislators need to hear from all of us about the importance of the stamp and the critical urgency for reauthorization! Since it was first introduced in 1998, the stamp has generated more than $89 million for critical breast cancer research funding at the National Institutes of Health (NIH) and Department of Defense (DOD). This program allows individuals to make a contribution to breast cancer research by purchasing the stamp, while also playing an important role in raising awareness of the disease. Take action now to ensure this program continues! Access to Breast Cancer Diagnosis Act Highlighted by CBS News Earlier this year, Congresswoman Debbie Dingell (D-MI) worked with Komen to introduce federal legislation to increase women’s access to diagnostic imaging. The Access to Breast Cancer Diagnosis (ABCD) Act, H.R. 2428, would eliminate cost-sharing for patients with private insurance for medically-necessary diagnostic breast imaging (diagnostic mammography, ultrasound, MRI). This issue was spotlighted by CBS News, along with Komen’s efforts to pass similar legislation at the state level across the country. Join our efforts to stop  insurers from imposing cost-sharing practices for these medically necessary exams! Federal Public Policy & Advocacy Updates Appropriations With only six hours to spare, on November 21 President Trump signed another continuing resolution (CR) to keep the government operating through December 20, allowing Congress more time for negotiations on  funding the government for FY 2020. Those of you who have been following the process closely will remember the main point of contention has been the top-line funding levels for each of the 12 spending bills, also known as the 302(b) allocations. Specifically, the Labor HHS bill—which includes funding for breast cancer research, screening and treatment—was one highly divisive sticking point as some sought to divert $5 billion from that bill to go toward construction of the border wall. Luckily House and Senate negotiators announced they had finally reached a deal on the 302(b) allocations shortly after Trump signed the second CR. Now, the House and Senate Appropriations Committees will need to iron out the details of each of the individual bills before they head to the chamber floors for a vote. With only two weeks left before the current CR runs out, it may be difficult to pass all 12 bills, but committee leadership has been optimistic they can get the work done! State Public Policy & Advocacy Updates Legislation Introduced in Florida Komen advocates have been hard at work in Florida, where two pieces of legislation have been introduced. House Bill 261, Coverage for Cancer and Associated Conditions Drug Treatment, will prohibit a health plan from requiring a patient with stage IV cancer to undergo burdensome fail first/step therapy protocols. Additionally, Senate Bill 416, known as Insurance Coverage for Breast Cancer Tests and Procedures, seeks to eliminate the patient out-of-pocket cost disparity between screening mammograms and medically-necessary diagnostic imaging. Sign up to be an advocate to join our fight in Florida and across the country! Welcome, Dana Carter! Dana is joining our team as the Regional Manager, State Policy & Advocacy for the North Central region, and is based in Indiana. She received her Bachelor of Arts in Political Science from the University of Indianapolis and received her Master of Public Administration from Indiana University. Previously Dana worked with the Indiana Farm Bureau where she built and maintained a grassroots group of engaged residents from Indiana (Hoosiers) to influence positive outcomes in agriculture and their communities. Additionally, she was responsible for representing the Indiana Farm Bureau and American Farm Bureau Federation at local, state, and federal events. General Public Policy & Advocacy Updates Advocate Spotlight – Kristen Stevens As a Komen HQ employee, Kristen first became involved with advocacy because of the implications for advocacy and public policy in advancing health equity in under-served communities, her main passion. Kristen says, “Working at Komen has opened my mind to what is achievable through advocating for specific policies, such as increasing funding for life-saving research at the DoD and NIH, and sitting across the table from the legislators who have the most influence on such policies.” Kristen is most passionate about issues that affect health equity, which happen to include all of our priority issues. Thank you, Kristen, for all you do for Komen to help achieve our Bold Goal!

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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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Patients' Access Webinar Series - Status of the Affordable Care Act

Please join us on Monday, October 28th at 12pm CST/1pm EST for the next webinar in our Patients' Access series, which will discuss the current status of the Affordable Care Act (ACA) and what’s next. Although health care might not be drawing as many headlines lately, the ACA has seen significant changes over the last couple years and there is a looming court decision that could invalidate it altogether. This webinar will provide an overview of beneficial patient protections included in the ACA, where things stand now legislatively and regulatorily, where things are headed and what all this means for those impacted by breast cancer. Speakers: Johanna Gray, Senior Vice President, CRD Associates Molly Guthrie, Director, Public Policy & Advocacy, Susan G. Komen Center for Public Policy Jennifer Tolbert, Director, State Health Reform, Kaiser Family Foundation REGISTER TODAY!

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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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Komen Advocacy Insider - July 2019

July 2019 Updates   Federal Public Policy & Advocacy Updates Legislation It’s been 6 months since the 116th Congress took office, and through our relentless advocacy and grassroots activity, our voices are being heard and driving change. There are many pieces of critical legislation that have been introduced, but we need your help to ensure your elected officials are putting breast cancer patients first. Read on for more information on the legislation that Komen is working on at the Federal level, and most importantly add your voice to our fight through one of the campaigns on our action center! Access to Breast Cancer Diagnosis Act - H.R.2428 Millions of women across the country have access to free screening mammography, thanks to its inclusion as a required essential health benefit under the Affordable Care Act (ACA). However, if the results of that screening mammogram suggest the need for a follow-up diagnostic exam, or if there has been recent history of the disease, people may be faced with hundreds to thousands of dollars in out-of-pocket costs — all before ever getting to treatment. The Access to Breast Cancer Diagnosis Act will eliminate insurance barriers to diagnostic imaging by preventing insurers from imposing cost-sharing practices for these medically necessary exams. Take action! Breast Cancer Research Stamp Reauthorization Act - H.R.2689/S.1438 The Breast Cancer Research Stamp is set to expire at the end of this year, and we need your help to ensure that this program remains available. Since it was first introduced in 1998, the stamp has generated more than $89 million for critical breast cancer research funding at the National Institutes of Health (NIH) and Department of Defense (DOD). This program allows individuals to choose whether they want to make a contribution to breast cancer research by purchasing the stamp, while also playing an important role in raising awareness. The Breast Cancer Research Stamp Reauthorization Act will make sure this program continues to be available.  Take action! Appropriations On June 19, the House of Representatives passed a legislative package that included 4 of the 12 individual appropriations bills: Labor, Health and Human Services, Education, and Related Agencies; Defense; State-Foreign Operations; and, Energy and Water Development. The legislation included funding for many federal agencies and programs Komen advocates for, including: $41.1 billion for the National Institutes of Health (NIH), $6.4 billion of which was allocated to the National Cancer Institute (NCI); $198.3 million for the Center for Disease Control’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP); and $150 million for the Department of Defense’s Peer-Reviewed Breast Cancer Research Program (DOD BCRP). Meanwhile, the Senate has been less productive in their appropriations efforts and are running out of time with the fiscal year coming to an end on September 30. The Senate still needs to write, consider, and pass all of their spending bills, and they will meet with members of the House to work out the discrepancies between the House and Senate versions of the bills. Once they come to an agreement, each chamber will vote again on the updated legislation, which then goes to the President’s desk for signature. There is still a lot to be done, but we are getting closer! Keep on eye on your inbox for an opportunity to engage with lawmakers during the appropriations process. State Public Policy & Advocacy Updates Ohio Thanks to the hard work and determination of our Ohio advocates, the Ohio Senate passed an amendment June 20 to expand access to the Ohio Breast and Cervical Cancer Project (BCCP), which provides critical breast cancer screening and diagnostic services for low-income, uninsured and underinsured women who do not qualify for Medicaid. The new requirements raise the income eligibility to 300% of the Federal Poverty Level (FPL), up from 250%. It also allows women as young as 21 to have access to the resources of the program, if they discover a symptom – the previous age cut-off was 25. BCCP is the number one safety-net for low income, underinsured and uninsured women to access mammograms, clinical breast exams and treatment for both breast and cervical cancer. Komen will continue to fight for more awareness of the BCCP’s programs and availability and – more critically – all-inclusive access to the BCCP’s Medicaid support program. Under current legislation, women who are diagnosed cannot access the BCCP’s Medicaid program -- high quality care throughout treatment  – unless their diagnosis came through BCCP screening itself. These barriers to access are particularly devastating for women with metastatic breast cancer, struggling with the financial toxicity of treatment, disability and quality of life issues. Ohio advocates, add your voice to our fight and take action! Louisiana Our advocates in Louisiana have been hard at work all session on two critical pieces of legislation that have now been signed into law by Governor John Bel Edwards! HB 370 will expand access to care for women living with metastatic breast cancer by prohibiting step therapy protocols in receiving their doctor prescribed treatment, and HB 347 will help all women in the state receive life-saving diagnostic imaging by eliminating the disparity in cost between diagnostic and screening exams. Thank you to all the people who made this possible! New York The New York State Legislature has passed S.2849/A.2969, legislation  that will ensure all prescriptions breast cancer patients are currently taking will remain at the same formulary level and cost throughout the entire contract period. This will prevent mid-year non-medical switching and put treatment decisions back into the hands of doctors and patients. This is a great step in ensuring that breast cancer patients do not endure additional pain and suffering due to mid-year formulary changes. Texas After years of work in Texas, our advocates were able to increase access to vital diagnostic mammography through HB 170, while also passing newly introduced legislation that will protect metastatic breast cancer patients from step therapy protocols with the passing of HB 1584. We can't wait to see what we can accomplish together in 2021! General Public Policy & Advocacy Updates Advocate Spotlight – Angela Waller Angela Waller is a twelve year triple-negative, breast cancer survivor. Angela is dedicated to educating African-American women about the importance of overall breast health, and wants all women to feel empowered to take control of their health and become advocates. If she could give one piece of advice to someone interested in becoming an advocate it would be, “Your voice and experience are needed. Get the proper training and do it.” In addition to being a passionate advocate, she calls herself a food snob and loves “good” food, which is understandable as she lives in Chicago, Illinois – a great foodie city. We are so glad to have Angela serve on our 2018 – 2019 Komen Advocacy Advisory Taskforce! We’re hiring! We are searching for a Specialist, Federal Policy & Advocacy. The Specialist will assist in the development of strategy and execution of federal public policy and advocacy initiatives related to breast health, breast cancer and public health, working towards achieving Komen’s Bold Goal; ensure thorough and accurate federal legislative and regulatory tracking; assist in building relationships with federal legislators and their staff; monitor the federal budget climate for impacts on breast health programs and research and provides reports; coordinate and provide robust administrative and project management support for advocacy events held in our Nation’s capital. This position will be based in our Washington, D.C. office. Please feel free to share with friends and others that might be interested in applying.

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