Jennifer Merschdorf
The Young Survival Coalition (YSC) is a nonprofit patient advocacy organization in the United States that supports approximately 250,000 patients diagnosed with breast cancer before the age of 40 years.1 The organization was founded in 1998 by a small group of women in New York City who were diagnosed with breast cancer before the age of 35 years. Jennifer Merschdorf is the Chief Executive Officer (CEO) of YSC and is also a patient. She was diagnosed with breast cancer 13 years ago and experienced going into menopause early, at the age of 36. In 2011, she was hired as the organization’s third CEO and joined YSC 9 months from diagnosis. YSC mainly supports patients and co-survivors by focusing on 3 key areas: patients’ education, survivorship, and building a community to reduce isolation among patients diagnosed with breast cancer at a young age.
More than 20,000 individuals are supported by YSC programs annually. The YSC provides support through virtual events and live meetings, including the prominent YSC Summit, representing the largest gathering of young adults affected by breast cancer worldwide.1
Project 528 is an important project initiated by YSC. The project has addressed an estimated 528,000 young adults living with breast cancer globally. It aims to create the first and largest global needs assessment of young adults living with breast cancer, their co-survivors, and the healthcare providers caring for them.2 The goal of YSC is to provide governments, healthcare facilities, and patients with the data needed to develop and implement effective support programs for young patients affected by breast cancer. To identify these global needs, the YSC formed a coalition with 12 patient advocacy organizations worldwide to help develop the tools, questions, and languages to gather the global needs assessment data.
The Project 528 survey was developed about a year ago and is available in 14 languages. As of last month, more than 3000 responses from 84 countries have been collected, with data available from 10 countries. Approximately 10% of responders are living with metastatic breast cancer.
The YSC is also evaluating the perceptions and preferences of young patients with breast cancer regarding extended ovarian function suppression (OFS) beyond 5 years and whether there is interest in participating in future trials evaluating this approach. Between January and April 2023, the YSC reached out to their entire population of patients with stage I to III breast cancer (without metastatic recurrence) who have received—or are currently receiving—OFS therapy. Initial results based on 1030 patients who completed the survey showed that many breast cancer providers and survivors are considering incorporating OFS beyond 5 years, and many have indicated interest in participating in further clinical trials of extended OFS.3
In summary, YSC is vital in supporting young patients with breast cancer and defining their needs and preferences regarding breast cancer treatment and care. Importantly, YSC’s work has uncovered opinions of breast cancer providers and survivors regarding continued OFS.
References
- Young Adults Facing Breast Cancer Together. Young Survival Coalition. Accessed December 17, 2023. https://youngsurvival.org
- Project 528. Accessed December 17, 2023. https://project528.youngsurvival.org
- Dibble K, Sella T, Ruddy K, et al. Ovarian function suppression (OFS) use beyond five years?: young breast cancer patient preferences. SABCS. 2023. Abstract PO4-01-11.
