Increased access to preventive care can potentially reduce health disparities and inequities. However, absent legal requirements at the federal and state levels, most insurers don’t currently provide the necessary coverage for high-risk individuals. Requirements for insurance carriers vary from state to state, creating additional barriers for underserved individuals who try to access genetic counseling and testing, and life-saving screening and preventative surgeries. While changing legislation at the federal level is critical, many issues surrounding insurance coverage and reimbursement must be addressed at the state level.
Individuals who are touched by hereditary cancers understand the importance of these issues, and they make passionate, effective advocates. FORCE’s innovative PALs (Patients Advocate Leaders) program engages this community and equips them to work toward positive change. Harnessing the power of patient advocates is working. PALs has mobilized and empowered 18 high-risk individuals within the hereditary cancer community across 13 states to engage in a variety of state and federal coalitions and policy efforts. They’ve already made impressive progress on behalf of high-risk individuals: supporting initiatives to expand access to screenings and fertility services and advocating for increased coverage and reimbursements that make necessary screening and diagnostic testing more affordable.
FORCE is in a prime position to have an even greater impact. With the support of Bright Pink, we are expanding the reach and depth of PALs to proactively identify and address state-level issues affecting the high-risk community. We’ll identify where strategic action can have the greatest positive impact and then deploy our PALs volunteers to those areas.
The broadened PALs program will increase engagement with policymakers at all levels of government, ensuring the most critical issues are addressed rapidly and comprehensively, and leading to improved access to evidence-based care. Our hope in the years to come is to deploy an army of passionate, engaged advocates in all 50 states. These committed and well-prepared individuals will work with our partner nonprofit and healthcare provider organizations, lawmakers, government agencies and health insurers to ensure that affordable or no-cost access to genetic counseling/testing, cancer screening, and preventive services are available to all high-risk individuals.
SIDEBAR: We need your help! If you’d like to get involved in state-level advocacy, please complete our volunteer application. We’ll get in touch to schedule a time to talk, learn about you and share more information about our program and the PALS role. You don’t need any experience—we’ll provide the training you need to succeed. Just bring your strong intent and passion.