I feel so lucky to meet patient advocates who are passionate about their work in various breast cancer communities. Whether we have met in person at a conference, in training, or online I feel the positive impact of their work daily in my work as a patient advocate. I sat down with two of those advocates in this DiepCFoundation educational channel interview to discuss opportunities in patient advocacy.
Alamo Breast Cancer Foundation
I met Denise Barlow and Sandra Stewart Stanford in December of 2016 at the San Antonio Breast Cancer Symposium after opening DiepCFoundation earlier that year. They both welcomed me with opened arms and guided me through the full week of sessions inviting me to join the patient advocate meetings each evening. It was through them I learned about patient advocacy training at Project LEAD. The Alamo Breast Cancer Foundation was started by Dale Eastman in late 1992-93-time frame.
Started around Dale’s kitchen table for other breast cancer patients, it has grown as a local grassroots organization in the San Antonio area. It has grown to be known as the leader in the Alamo Advocate Program at the yearly Symposium welcoming advocates from around the globe. This organization also provides free mammograms for those who qualify for financial need. They work with other organizations in San Antonio and provide a helpline for breast cancer patients.
Patient Advocacy in Various Roles
Sandra points out that patient advocacy takes on different roles. A patient advocate is a survivor who can be as involved as one likes. It can be spending volunteer hours helping other organizations or participating in events like the 10K run I was at sponsored by PRMA the week we filmed the video. The idea behind patient advocacy is to support other survivors no matter what the time involvement is.
Patient advocates who attend the San Antonio Breast Cancer Symposium have a lot of information to absorb the week they attend. It is a scientific conference that requires an understanding of basic terminology and breast cancer tumor biology. Patient advocates are encouraged to attend programs like the AACR Scientist↔Survivor Program® or Project LEAD® to gain this scientific understanding of cancer research, survivorship, advocacy, and public policy.
Encouragement from Others in Patient Advocacy
There is no room for “silo mentality” in the world of patient advocacy. We must encourage each other to become involved to whatever capacity one has the time and desire to do so. Breast cancer patient advocates aim to provide evidence-based information, emotional support, and a sense of community that is often needed after a diagnosis.
Look for those individuals who want to give back, pay it forward, and continue sharing what they have learned being survivors. Encourage them to join you in your advocacy work sharing what you know and have learned. There are many healthcare professionals, researchers, surgeons, and physicians who want to be a part of the patient advocacy community. There has been a paradigm shift in the past few years. Now industry leaders are listening to and engaging with the patient advocacy community. Patient stories, our lived experience, training and knowledge in breast cancer are valuable insight into improving treatment.
See you in San Antonio for the Patient Advocacy Program 2022!
I am excited to be returning to the San Antonio Breast Cancer Symposium in 2022. I look forward to seeing Denise and Sandra along with acquaintances old and new. It will be great as we share our experience and the opportunities about patient advocacy in breast cancer.