Cancer Policy Institute
The Cancer Support Community brings together patient advocates and policy experts to ensure that the voices of cancer patients and their loved ones play a central role in federal and state legislative, regulatory, and executive policy making.
About Our Cancer Policy Institute
Our Cancer Policy Institute (CPI) works in partnership with patient advocates, the CSC network, and numerous allied health care and oncology organizations to work towards a future where more than 18 million cancer survivors across the country have access to comprehensive, high-quality, timely, and affordable medical, social, and emotional care.
Patients are at the center of the work of the CPI. We utilize leading-edge data from our Research and Training Institute to support our policy positions with evidence that is based in the patient experience.
Whether we are on Capitol Hill or in state legislatures, in discussions with regulators, or working in policy coalitions, our focus is always on the patient and how we can work towards a system that is truly centered on the experiences, preferences, and values of cancer patients and their loved ones.
- Policy Priorities & Principles
- Aims & Positions
- Policy Comments
- Policy & Advocacy Resources
- CPI Advisory Board
We are proud to serve our community through engagement in public policy and advocacy.
Our work is driven by policy pillars, which are centered around the values, needs, and preferences of individuals impacted by cancer.
We work with patients, patient advocacy organizations, medical associations, and other stakeholders to advance policies aimed at improving access to, affordability of, and quality of care across the cancer continuum.
Designed with advocates in mind, our resources include advocacy tools, educational videos, and more.
Our focus is always on the patient and how we can work towards a system that is truly centered on the experiences, preferences, and values of cancer patients and their loved ones.
Meet Our Board Members
Key Projects
Cancer Cachexia in Focus
In November 2021, we held a virtual meeting to raise awareness about the impact of cancer cachexia. Cancer cachexia is a condition that causes weakness, muscle loss, and drastic unintentional weight loss leading up to a cancer diagnosis or during treatment. This meeting was focused on listening to and learning from patient and caregiver perspectives on living with cancer cachexia.
This meeting also helped to inform the U.S. Food and Drug Administration (FDA) about the patient and caregiver perspective on living with cancer cachexia. Watch the recording of our meeting to raise awareness of the impact of cancer cachexia.
UM Summit
In June 2025, CSC gathered patient and caregiver advocates, healthcare providers, policy experts, healthcare innovators, and thought leaders for the 2025 Utilization Management Summit to discuss pressing healthcare issues of the moment and explore collaborative solutions that center patients, support providers, and strengthen our healthcare system – shaping the future of utilization management (UM) policy and practice.
The summit was part of the 7th year of our Forum on Utilization Management, created to foster thoughtful dialogue to inform and engage a broad range of healthcare stakeholders in the creation and implementation of UM strategies that incorporate the patient and caregiver perspective and incentivize cost-efficiency through improved patient care and outcomes.
IRA Summit
On September 25, 2025, the Cancer Support Community (CSC) brought together patient and caregiver advocates, policy experts, healthcare innovators, and thought leaders for the 2025 Inflation Reduction Act (IRA) Summit to discuss key aspects of the IRA, unintended consequences on patient access and the healthcare delivery system, and future opportunities to engage with the Centers for Medicare & Medicaid Services (CMS).
Patient Engagement
Meaningful patient engagement is crucial for successful implementation of the Medicare Drug Price Negotiation Program under the Inflation Reduction Act (MDPNP).
We came together with members of the larger patient advocacy community to align on patient-centered principles to inform a definition of clinical benefit for patients and caregivers that can be used throughout engagement with the Centers for Medicare & Medicaid Services (CMS) as the agency continues to implement the MDPNP.
Native Cancer Policy Summit
On November 3, 2025, the Cancer Support Community (CSC) gathered over 80 tribal leaders and community members, patient and caregiver advocates, community-based providers, payers, and policymakers for the Inaugural Native Cancer Policy Summit. This pre-event to the American Indian Cancer Foundation’s (AICAF) Native Cancer Conference elevated Native voices, surfaced actionable policy recommendations related to Native and Indigenous people impacted by cancer, and catalyzed sustainable, regionally tailored programming to improve cancer care. Discussions consistently underscored ensuring cultural humility as the foundation to trust, engagement and improving outcomes.
H.R 1 FAQ
Frequently Asked Questions (FAQ) document created in partnership with CancerCare, Cancer Nation, International Myeloma Foundation, and LUNGevity. The goal of this resource is to equip patient navigators and helpline teams with resources and information needed to address anticipated patient and caregiver concerns related to changes in healthcare coverage and eligibility following the passage of H.R. 1.
Issue areas include:
- Medicaid work requirements and exemptions (including for patients and caregivers)
- Redetermination and verification requirements
- Medicaid eligibility changes
- ACA marketplace open enrollment changes & coverage changes
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Help us stand up for policies that improve lives and care coverage for patients, survivors & caregivers.
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