In 2013, the National Coalition for Cancer Survivorship (NCCS) represented the patient perspective in national meetings, convened policy experts and thought leaders, submitted comments on federal policies, developed tools to address gaps in cancer care planning, advocated for quality cancer care, and championed legislation that would give Medicare beneficiaries access to cancer care planning and coordination. NCCS is proud to highlight some of our accomplishments from the past year that brought us closer to our mission of quality cancer care for all people touched by cancer.
- NCCS was named as a contributor to a Patient-Centered Outcomes Research Institute (PCORI) funded research project on patient-reported outcomes.
- NCCS hosted a town hall discussion in North Carolina about strategies to improve the quality of care for cancer survivors.
- NCCS launched its thirteenth year of semi-annual Cancer Policy Roundtable “think tank” meetings, with advocates, providers, payers, and drug developers, who discussed strategies to improve the development of diagnostics and targeted therapies and the impact of federal budget woes on cancer research.
- NCCS participated in a town hall meeting in Indiana and shared the patient perspective on efforts to reform the cancer care payment and delivery system.
- The bipartisan Planning Actively for Cancer Treatment (PACT) Act (H.R. 2477) was introduced. NCCS’ top legislative priority, the PACT Act would create a Medicare service for cancer care planning and coordination.
- In a letter to the Food and Drug Administration (FDA), NCCS and patient advocate colleagues applauded the FDA’s plan to expedite review and offered comments to strengthen the plan.
- NCCS was a panelist at the FDA’s Lung Cancer Patient-Focused Drug Development meeting, and shared patient perceptions of the challenging treatment decisions patients must make.
- At the National Comprehensive Cancer Network Policy Summit, NCCS Senior Health Policy Advisor Ellen Stovall shared her perspectives on quality cancer care from her experience as a three-time, 42-year cancer survivor.
- NCCS developed two new tools to help patients partner with their physician to plan their treatment to reflect their values and preferences.
- NCCS was awarded a grant from PCORI, along with the National Committee for Quality Assurance and other collaborators, to evaluate patient-centered oncology care.
- In comments to the Centers for Medicare and Medicaid Services on the proposed update of the Medicare physician payment system, NCCS called for movement toward patient-centered cancer care that includes an individualized cancer care plan.
- NCCS hosted a panel discussion with influential members of the media, including NBC Chief White House Correspondent Chuck Todd as moderator, about the media and the cancer experience
- NCCS announced the appointment of Shelley Fuld Nasso as CEO. Shelley brings significant policy expertise, in addition to personal experience as a caregiver and supporter to family and friends diagnosed with cancer.
- At its second Cancer Policy Roundtable of 2013, NCCS assembled cancer leaders for an in-depth discussion on reforming the cancer care payment and delivery system.
- NCCS presented at the Colon Cancer Alliance’s National Conference about the Patient Protection and Affordable Care Act and its implications for cancer patients.
- NCCS announced the successful integration of patient data directly from cancer registry software into the Journey Forward software, eliminating a major barrier to the creation of survivorship care plans.
- In November, The Hill featured an opinion editorial penned by NCCS CEO Shelley Fuld Nasso. In the piece, and in a letter to Congress, NCCS applauded the bipartisan proposal to reform Medicare physician payment as an important step toward a more patient-centered system that rewards the quality of care rather than volume of services.