Joy Simha is one of the 3 original co-founders of Young Survival Coalition (YSC). She has served on YSC’s Board of Directors and the Executive Committee of the National Breast Cancer Coalition. Joy was an ad hoc reviewer for the Department of Defense Peer Reviewed Breast Cancer Research Program, and she currently sits on the Integration Panel of the Department of Defense Breast Cancer Research Program. In 2010, she was appointed to the Center for Disease Control Panel on Breast Cancer in Young Women. She has served as a Consumer Advocate for various Cochrane Coalition Systematic Reviews and is a Consumer Advocate for some of AHRQ’s Brochures and Communications to the Public. We are honored to present Joy Simha as one of the YSC Game Changers for co-founding YSC and her continued advocacy.
What inspires you in your work to support, empower or educate young women affected by breast cancer?
We need an end to breast cancer. We need young women to advocate that resources be focused on the goals of the National Breast Cancer Coalition's Breast Cancer Deadline 2020. I do this work because I know it needs to be done. It's difficult. It's confrontational. I read a lot of science. I talk to a lot of people. It's time-consuming but very gratifying when I can help someone else understand a complicated breast cancer issue or when I can help a scientist tweak their research so it is more relevant. I am most excited when my work enables me to make a politician understand an issue and how to fight to make change happen.
What about your work for young women affected by breast cancer makes you most proud?
I am most proud of the other advocates around me. They speak factually and help researchers focus their work on questions that will save lives or interventions that might change treatment into a more effective and less toxic experience. Without these comrades-in-arms, I would have quit long ago.
We know our work is important, and we hold each other up. There are so many phenomenal advocates involved in Young Survival Coalition. Their voices have been encouraged, and they have been supported in their education by YSC. We could not do this very difficult work without each other. I am proud that there are so many of us and hopeful that more will join the ranks.
What are your hopes for the future, with regard to YSC and young breast cancer survivors?
I hope that YSC continues to encourage its constituents to find their voices, be informed by facts and help in the fight to end the disease. I hope that YSC continues to help other survivors get the education they need to speak from an informed position.
What is your message for YSC on its 20th anniversary?
Thank you for the sisterhood, the comradery and the support that you give everyone fighting early onset disease. If we find the answers to the most important questions, we know that we can truly change the game for women affected by breast cancer. Let us make that our goal now. Let us truly change the game.
Anything else you'd like to share?
I truly believe that working with researchers and politicians is the way to end this disease. It has become so much harder in the past decade to get this work done, but women affected by breast cancer persevere for our children's sake.
We want a world where we don't have to hear the words "you have breast cancer.” The only way to make that happen is if more women think critically about every breast cancer initiative. They need to truly focus their attention on how to end this disease and fight for that. We need every woman in this fight if we are to make it happen, and we can do that at breastcancerdeadline2020.org.
About YSC and Game Changers
Young Survival Coalition was founded in 1998 by young women diagnosed with breast cancer under age 35.
YSC is made up of people: survivors, co-survivors, volunteers, donors, healthcare providers. Our strength comes from our community. So in our 20th year, we will honor our roots — the people who have helped build YSC into what it is today — and also look forward, recognizing those in our community who are changing the future of breast cancer in young women.
We are highlighting these individuals as Game Changers throughout 2018 and sharing their stories with the world to thank them for their contributions to our community.
