What Now? NCCS Pushes for Roadmaps to Cancer Care

The National Coalition for Cancer Survivorship is dedicated to helping people navigate the cancer survivorship process.

When people go on a road trip, they often have a clear idea of what’s going to happen. They have an itinerary of the activities and a map dictating how to get from point to point. When facing a cancer diagnosis, many people have no idea what comes next.

For the past three decades, the National Coalition for Cancer Survivorship (NCCS) has been working to change that.

“Our vision is to be an advocacy organization that reflects the needs of all cancer survivors to effect policy change at the national level,” the nonprofit’s mission reads. The organization considers survivorship to start at the moment of diagnosis.

NCCS was founded 30 years ago in Albuquerque, New Mexico, when a group of cancer survivors formed a support group because there was not much guidance on what to do after you beat the disease. They began to push for cancer care plans for both patients and survivors, and then in 1992 decided to move to Washington, D.C., to have better access to the nation’s lawmakers.

One of the projects that the NCCS is currently undertaking is called the Planning Actively for Cancer Treatment (PACT) Act, in which members are pushing for legislation regarding a personalized care plan for patients using Medicare.

“It would create a Medicare service to pay for this cancer care planning,” says CEO Shelley Fuld Nasso. “We believe that if it’s not adequately paid for, it’s not going to happen. So to make sure it’s paid for is how we are going to make sure it happens.”

PACT was introduced into Congress as bill H.R. 2846 and has bipartisan support. If passed, these patients with cancer will no longer be left asking “What now?” According to Nasso, having a plan during treatment would make a crafting a plan for survivors much easier.

Helping to be a “voice for the patients throughout the whole experience,” says Dan Weber, NCCS communication director, there are a number of resources on their website to help people become political advocates for cancer care. Their Cancer Policy Advocacy Team (CPAT) has webinars, e-newsletters, online forums and conferences that guide patients, survivors and caregivers in topics from policy information to contacting a congressional representative.

“We’re hopeful that the efforts of our advocates in the cancer community will get more traction for the bill to be passed,” Nasso says.

Nasso says that within the next five or 10 years, NCCS is hoping there will more coordinated care that looks at the patient as a whole.

“There’s been an understanding that patients don’t necessarily understand their prognosis and that affects the treatment options they choose,” she says. “There’s definitely a movement toward creating survivorship care plans, but it’s still not common practice.”