Young Breast Cancer Survivors Program

Overview

Breast cancer is a leading cause of cancer illness and death among women in the United States. About 10% of all new cases of breast cancer in the United States are in women younger than 45 years of age. The young women diagnosed with these cancers are called young breast cancer survivors (YBCS). They often face difficult medical, psychosocial, financial, and health issues related to their diagnosis and treatment.

More than 150,000 US women are living with metastatic breast cancer (MBC), and 3 in 4 of them had initially been diagnosed with an earlier stage of breast cancer.1 Metastatic, or stage IV, breast cancer is when cancer cells have spread from the breast to distant parts of the body. Women with MBC have distinct challenges that greatly affect their physical and mental health. Care for women with MBC is intense and expensive, particularly in younger women with tumors that are more aggressive and harder to treat.

In 2024, CDC funded 11 organizations for 5 years to provide structured support services and resources for YBCS, MBC patients, and their families. These services and resources are designed to increase patients' survival and improve their quality of life. These organizations also provide educational resources for health care providers who serve this population.

The funded organizations are:

• Adelphi University
• The Board of Trustees of the University of Illinois
• Breast Cancer Resource Center
• Dana-Farber Cancer Institute
• Facing Our Risk of Cancer Empowered (FORCE)
  
• Living Beyond Breast Cancer
• Michigan Department of Health and Human Services
• National Association of Chronic Disease Directors
• Sharsheret, Inc.
• Joan and Sanford I Weill Cornell Medical College
• Young Survival Coalition

Program strategies

• Foster collaborative relationships with nongovernmental organizations that represent and serve priority populations. The programs have convened networks of providers, survivors, and caregivers to educate and inform key stakeholders on health issues among these populations that can be addressed through policy, systems, and environmental (PSE) change interventions PSE changes.
• Foster collaborative relationships with comprehensive cancer control coalitions to support the inclusion of goals and strategies to support women who are younger and those with MBC and their families in cancer control plans across the United States, tribes and tribal organizations, US territories, and United States Affiliated Pacific Island Jurisdictions.
• Educate and inform survivors, caregivers, family members, and friends on assistance in coping with the effects of treatment and provision of cancer care plans.
• Identify and cultivate a sustainable action plan for a PSE change agenda. Programs have developed action plan agendas to facilitate PSE changes that support YBCS' unique needs.
• Provide innovative educational opportunities for health care providers. Programs conducted an environmental scan to learn about existing educational opportunities, promoted existing provider education opportunities that were approved by CDC, and developed new educational opportunities based on gaps identified in their environmental scans.
• Provide equitable access to psychosocial support for YBCS, women with MBC, caregivers, and multigenerational families to manage disease-related emotions, increase social support, enhance relationships with family and physicians, and improve symptom control.

Priority populations

This program focuses on YBCS and, when appropriate, their caregivers. The program prioritizes YBCS and individuals with MBC in groups that have been economically and socially marginalized and disproportionately affected by breast cancer that would benefit from additional survivor support. These communities include, but are not limited to, young women:

• Who are African American, Black, Asian, Pacific Islander, American Indian, Alaska Native, Hispanic, and Ashkenazi Jewish.
• Who are LGBTQIA+.
• Who have a low socioeconomic status.
• With physical, mental, or emotional disabilities.

Evaluation

This program builds on the successes of previous programs. But for further improvements, an evaluation with well-defined outcomes allows a program to build on its successes, grow, and evolve. The evaluation assesses the extent to which programs:

• Increase equitable access and availability of psychosocial and structural support services for women who are younger and women with MBC and their families.
• Improve patient-provider interactions during follow-up and subsequent care.
• Achieve the outcomes outlined in the notice of funding opportunity.