WCOE: Childhood Cancer Action Day, NCCS Provides Patient Perspective at IOM Workshop, and Pre-Hospice Program Report

In a blog post on The Hill, Stephen Crowley urged Congress to “step up” funding for pediatric cancer research, as more than 250 advocates convened in Washington, D.C. for the Alliance for Childhood Cancer Action Day. NCCS is a member of the Alliance and was pleased to participate in and sponsor the advocacy effort. Crowley pointed to a 30% decline in purchasing power of the National Cancer Institute (NCI) over the last decade, the small percentage that NCI devotes to pediatric cancer research, and the lack of incentives for private investment in pediatric cancer research. He also points out the serious, long-term health consequences for survivors of childhood cancer.

Oncology Times reported on a recent Institute of Medicine (IOM) workshop, “Ensuring Patient Access to Cancer Drugs.” NCCS CEO Shelley Fuld Nasso was a panelist at the workshop and provided the patient perspective on access to cancer drugs and communicating with patients about the cost of treatment. She reflected on the concerning trends in the cancer care system that result in barriers to access to care for patients. She also noted that the current reimbursement system does not value what matters to patients – the time spent with their physician and care team. The Institute of Medicine has posted videos from the workshop.

A report by KQED in California looked at a pre-hospice program offered for patients with multiple chronic conditions. The program is for patients who do not qualify for hospice, yet need assistance managing their health. Unfortunately, in our current fee-for-service payment environment, the services provided are not reimbursable. And services that keep people out of the hospital mean lost revenue for hospital systems. Yet the services would help patients maintain quality of life and comfort. It is unfortunate that our current system and incentives focus on volume, rather than patients’ health and well-being.