Our 2020 Newsletter
Happy New Year!
As this most eventful year draws to a close, it is high time to reach out and share the highlights (and downlights) of 2020 for Breast Cancer Over Time (BCOT), our staff, our members, and the wider breast cancer prevention world. We’d love to hear your thoughts on our work and your donations to support us are always needed and greatly appreciated.
Legislative Victories
First off, we have exciting news on successful breast cancer prevention advocacy efforts at the California State Capitol. Two bills we actively supported in 2019 and 2020 passed the California State legislature and were signed into law by Governor Newsom on September 30, 2020. Through this process, we’ve had the privilege of developing amazing partnerships with other breast cancer advocacy groups, environmental justice groups, and even clean beauty brands. Polly Marshall (our Executive Director and Principal Investigator on our study), Samantha Torres-Durant (our Assistant Director and Study Coordinator), and a rotating group of BCOT support group members and friends, travelled to Sacramento to lobby state legislators and provide both substantive testimony and supportive “me-too”s at legislative committee hearings. Polly was honored to testify as an expert witness (in these instances, as a breast cancer survivor and mother) before both the Assembly Health Committee and the Assembly Environmental Safety and Toxic Materials Committee, alongside representatives from Breast Cancer Prevention Partners (BCPP), Black Women for Wellness, CalPIRG, Beauty Counter, and the Environmental Working Group, who did an amazing job sponsoring and passing these bills.
Witnesses and supporters of AB 495 (renamed AB 2762) for Assembly Health Committee Hearing on January 17th, 2020. Left to Right: Samantha Torres-Durant (BCOT), Dr. Tanya Khemet Taiwo (UC Davis), Assemblymember Muratsuchi (bill sponsor), Janet Nudelman (BCPP), Polly Marshall (BCOT), and Dr. Carol Kronenwetter (BCOT)
Polly Marshall testifying as a witness in support of AB 495 (renamed AB 2762)
Lobbying Team at the California State Capitol. Left to Right: Kathryn Bache (BCPP), Lisette van Vliet (BCPP), Polly Marshall (BCOT), Tina Chiara (BCOT), and Ivanna Yang (Beautycounter) on December 16th, 2019
The first of the new laws is the California Fragrance and Flavor Ingredient Right to Know Act of 2020, SB 312, which requires companies that sell personal care and cosmetics products in California to report toxic fragrance or flavor chemicals that are present on any of the 23 hazard reference lists to the California Safe Cosmetics Program Product Database. This database is available to the public and allows for consumers to make informed decisions about their personal care product purchases. The second law is the Toxics-Free Cosmetic Act, AB 2762 (formerly known as AB 495), which bans the sale of personal care and cosmetics products in California that contain 25 identified carcinogenic or toxic chemicals. These include the worst parabens and phthalates and 13 different per- and polyfluoroalkyl substances (PFAS), and matches the bans of toxic ingredients already in place in the EU.
These bills align with BCOT’s commitment to breast cancer prevention, because many of the chemicals they disclose or prohibit are known carcinogens or xenoestrogens (manufactured estrogens) that increase breast cancer risk. These new laws protect consumers by outright banning the use of the most hazardous chemicals in personal care products and by requiring disclosure of other dangerous chemicals so we may know exactly what we are putting on our and our families’ bodies when we use these products.
Adopting these laws in California, which has the fifth largest economy in the world, will be instrumental in changing practices of cosmetic manufacturing and sale around the world.
Breast Cancer Advocacy Work
Polly and Sam attended the San Antonio Breast Cancer Symposium (the largest gathering of breast cancer researchers, doctors, and advocates in the world) live in 2019 and digitally in 2020. They attended numerous educational sessions, made contacts with advocates and scientists from every continent, and even joined a demonstration.
Sam at the METUP demonstration to advocate for diversity and inclusion in breast cancer clinical trails at the San Antonio Breast Cancer Symposium, 2019
In May 2020, Polly and Sam attended the National Breast Cancer Coalition (NBCC) Advocacy Leadership Summit (virtually) and participated in NBCC’s Virtual Lobby Day in June, where we had lobbying appointments by Zoom with staff of 14 different House Representatives and Senators from California. We lobbied in favor of the Metastatic Breast Cancer Access to Care Act (S. 1384/H.R. 2178), which would end onerous Medicare and disability waiting periods for people diagnosed with metastatic breast cancer, and has yet to pass Congress. NBCC has asked Polly to be the California coordinator and Samantha to be the Hawaii coordinator for NBCC’s 2021 Lobby Day, hopefully in person in Washington, DC next summer.
Breast Cancer Support Group
Since the start of the pandemic, our support group has undergone some exciting changes. By popular demand, we have switched back to weekly meetings, and for now we meet exclusively via Zoom. Meeting virtually has allowed us to expand participation to new members and former members who live outside of the Bay Area and even in other states. We’ve had great attendance at our groups as we strive together and support each other to meet the challenges faced by newly diagnosed people, people in active treatment, and survivors of any vintage in the midst of the pandemic.
Our leadership has transitioned, with our original group leader Carol Kronenwetter, PhD retiring in September. We cannot thank Dr. Kronenwetter enough for the guidance, support, and love she has shown to thousands of women in her long career, and are glad her work will continue as a BCOT Board Member. BCOT founder Polly Marshall now facilitates the support group as a peer leader. Polly has participated in the support group since its genesis and oversaw its transition from a hospital-based to a community-based group. She has recently completed Healing Circles Leadership Training through Commonweal and Healing Circles Global, and is eager to put her new skills into practice.
Dr. Carol Kronenwetter, Ph.D, retiring support group leader
Please click the link below if you’d like to learn more, or if you know anyone who might like to join the BCOT Support Group.
SUPPORT GROUP
Breast Cancer Prevention Study
BCOT has been the proud co-sponsor (with the CPMC Research Institute) of “In Vivo Impact of Xenoestrogen Exposure on the Human Breast,” a research study funded by the California Breast Cancer Research Program, in which healthy women donate normal breast cells for scientific study of links between the use of personal care products containing parabens and phthalates and breast cancer risk. BCOT’s role has been to recruit women who have never had cancer to participate in the study, obtain their informed consent, support them through the biological sample donation process, and encourage compliance with the study’s “healthy intervention,” during which participants use only study-supplied clean cosmetics. Through this process, we’ve worked with dozens of dedicated volunteers willing to undergo personal discomfort to provide healthy breast cells for research; many of them are daughters, granddaughters, nieces, sisters, and friends of people living with, or dying from, breast cancer, and in whose honor and remembrance they have made their vital contributions. We are privileged to have witnessed their dedication, and will always be grateful to them.
Personal care and cosmetics products disposed of by a cancer survivor after learning about their ingredients from our study
A member of the breast cancer advocacy group, Zero Breast Cancer, wrote about her experience as a study participant in a blog post on their website. Check it out here!
Our novel study protocol requires two visits by each participant to a medical facility which, unfortunately, in this pandemic we cannot ethically ask healthy individuals to do. For that reason, our research team has made the difficult decision that we will not recruit additional study participants. For the remainder of our study term, we will analyze the data we’ve received from the samples generously donated to date, contribute to scientific manuscripts, and write articles and other outreach materials for the general public. We are very proud of the work we’ve accomplished, and although study recruitment may be at a close, we will continue our mission to support scientific research into breast cancer causation and prevention.
In Memoriam
Blandina Khondowe at the San Antonio Breast Cancer Symposium, 2019
One year ago, at the San Antonio Breast Cancer Symposium (SABCS), Polly and Sam made a new friend: Blandina Khondowe, an awesome woman, two-time breast cancer survivor, and breast cancer advocate from the country of Malawi, in southeastern Africa. Blandina was the recipient of the Barbara Brenner Breast Cancer Activist Scholarship in 2019, which made her trip to SABCS possible. A former Ms. Malawi (2002), Blandina served as the country’s chief tourism officer at the time of her death last month; she used the power and prestige of both these positions in her breast cancer advocacy work. While at SABCS, she worked tirelessly to make friends and contacts who might help advance prevention, diagnosis, and treatment in Malawi. She had an electric and magnetic personality that captivated us all and we had great fun both working and playing together. She is survived by her husband and two young children. She will be greatly missed. Please visit the link below to see the article written about her in the Malawi journal The Nation.