Guided by the Cancer Support Community’s (CSC’s) mission to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community, the Cancer Policy Institute (CPI) is proud to serve our community through engagement in public policy and advocacy.
In 2022, we are particularly focused on 4 core principles:
Ensuring that the full patient experience, which provides crucial information about a condition, therapy, or clinical investigation, is captured throughout the clinical process and beyond. CSC supports the collection, measurement, and meaningful communication of patient experience data that includes both the patient’s physical and psychosocial impacts as an essential part of the drug development process and cancer care from diagnosis to survivorship.
Examining the use of utilization management (UM) tools that fail to incorporate the patient perspective and may reduce access and affordability to essential care and treatment, as well as impose undue burden on patients and providers. UM tools such as prior authorization and step therapy should be patient-centered and designed and implemented to foster cost-effective, seamless care. CSC supports efforts to curtail the burden of UM techniques imposed on patients.
Working to ensure seamless and equitable access to comprehensive cancer care before, during, and after times of public emergencies. The COVID-19 pandemic exposed ongoing, unaddressed disparities in our health care system that were further exacerbated by new and increased risks and burdens posed by the virus on cancer patients and survivors. CSC is committed to working with policy makers to ensure access to comprehensive cancer care, including mental health, during the pandemic and beyond.
Eliminating health disparities and creating equity in systems across the cancer continuum. Health equity is a driving force in all policy considerations and decisions at CSC. Health disparities can only meaningfully be addressed when all individuals have access to, and can afford, health care insurance and services. CSC is committed to supporting efforts to advance health equity.
CSC’s Legislative and Regulatory Priorities
Access and Affordability of Health Care
Support and advocate for policies at the federal and state level that improve access to and affordability of comprehensive, high-quality health care coverage, preserve patient protections, and increase access to early detection screening and life-saving treatments and therapies for cancer patients and survivors. We encourage the advancement of measures that increase access and lower patients’ prescription drug costs, preserve the six protected classes, and cap patient out-of-pocket costs under Medicare Part D.
Telehealth and Tele-mental Health Services
Support and advocate for policies at the federal and state level that permanently extend flexibilities in telehealth and tele-mental services, including audio-only, to ensure patients continue to have access to health care services during the COVID-19 pandemic and beyond. We also advocate on behalf of policies and programs that expand access to internet broadband services.
Cancer Research and Drug Development
Support policies that advance innovative and improved treatment through collaborative engagement with the Administration, Congress, Food and Drug Administration (FDA), National Cancer Institute (NCI), sponsors, providers, and patient advocacy organizations to augment funding for cancer research, broaden clinical trial eligibility criteria that is evidence-based, ensure equitable access to clinical trials to reflect diverse populations, incorporate real-world data to better inform post market surveillance, advocate for patient-centered policies during the development and evaluation process (e.g., PDUFA reauthorization, accelerated approval program, patient-centered endpoints, etc.).
Cancer Screening and Early Detection
Support the creation of a new coverage pathway in Medicare to allow for beneficiaries to access multi-cancer early detection screening tests through passage of the Medicare Multi-Cancer Early Detection Screening Coverage Act (H.R. 1946/S. 1873), which would ensure beneficiaries have coverage for new, breakthrough screening technologies that detect cancer at earlier stages. We also support federal cancer prevention and screening initiatives, including the Centers for Disease Control and Prevention’s (CDC) cancer programs, that provide key resources to states and communities to prevent and control cancer, especially among those communities disproportionately affected.
Paid Family and Medical Leave
Support federal efforts to create and fund a national Paid Family and Medical Leave program that includes paid leave benefits for people with serious illnesses and health conditions, as well as caregivers.
Step Therapy Reform
Advance efforts to improve step therapy protocols and ensure patients are able to safely and efficiently access the best treatments. Support the passage of state and federal bills related to step therapy, including the Safe Step Act of 2021 (H.R. 2163/S. 464).
Support efforts that incorporate the inclusion of the patient voice into value-based policies that impact the daily lives of patients, survivors, and their loved ones. As value-based care is implemented in the health care sector to deliver high-quality care that is also more cost-effective, CSC is committed to ensuring the voice of the patient has an integral role in the discussion and determination of value. We support non-discriminatory policies that utilize transparent, patient-centered tools that identify and incorporate patient perspectives in determining the value of new treatments.
Copay Accumulator Adjustment Programs
Support state and federal legislation, including the Help Ensure Lower Patient Copays Act (H.R. 5801), to ban copay accumulator adjustment programs that prohibit manufacturer copay assistance from being applied toward a patient’s annual deductible and/or maximum out-of-pocket cost sharing.
Advance both state and federal efforts, including the Cancer Drug Parity Act of 2021 (H.R. 4385/S. 3080), to provide coverage for oral chemotherapy drugs with the same out of pocket cost sharing as chemotherapy drugs administered intravenously by a physician.
Diagnostic Testing Reform
Support efforts, including the Verifying Accurate and Leading-edge IVCT Development (VALID) Act (H.R. 4128/S. 2209), to increase patient confidence in the validity and accuracy of diagnostic tests by expanding FDA oversight to include tests developed internally by clinical laboratories.