Bill calling for written care plans for cancer patients introduced in Congress

Legislation created by leading cancer advocates and inspired by Institute of Medicine

A bill aimed at making the cancer patient an informed and active participant in his or her own care was introduced in Congress on December 16th by Rep. Lois Capps (D-CA) and Rep. Charles Boustany (R-LA). The Comprehensive Cancer Care Improvement Act (CCCIA) (H.R. 3705) would advance Institute of Medicine (IOM) recommendations for written care plans detailing both active treatment and survivorship care.

If enacted, the CCCIA would establish cancer care planning as a Medicare service, thereby helping make it a routine practice. Physicians would be reimbursed for providing patients with cancer care plans detailing all elements of care and symptom management, including treatment of pain, nausea and vomiting, fatigue, depression, and psychosocial needs, at the start of treatment, any significant change in the patient’s condition or care, and the transition from active treatment to follow-up care. In addition to helping patients make informed decisions, the plan could be shared with multiple providers, allowing for better coordination of care.

“As more and more Americans survive cancer, the way we treat this disease must evolve. We need a comprehensive approach to treat the whole person, their cancer, and their treatment side effects. For so many, cancer has become a chronic condition and until now, there have been few attempts to ensure that patients have the tools they need to deal with the lingering effects of this disease. As part of this effort, it is critical that we adopt a more comprehensive approach to providing care for our expanding population of cancer patients and survivors. I am pleased to have been able to introduce this legislation with one of my colleagues across the aisle—the fight against cancer has truly been a bipartisan effort,” said Representative Capps.

The CCCIA would also establish education programs aimed at strengthening medical professionals’ cancer care planning skills and encourage research investments in the areas of cancer care planning, symptom management and palliative care.

IOM Led the Way for Legislation

The CCCIA is based on recommendations of the IOM’s National Cancer Policy Board, and was developed by the National Coalition for Cancer Survivorship (NCCS) in collaboration with colleagues in the patient advocacy community. The legislation has been endorsed by leading patient and provider organizations, including the American Cancer Society Cancer Action Network (ACS CAN), American Society of Clinical Oncology, Leukemia & Lymphoma Society, LIVESTRONG, Lymphoma Research Foundation, and Susan G. Komen for the Cure Advocacy Alliance.

“We applaud the commitment of Representatives Capps and Boustany to improving cancer care for Medicare beneficiaries living with cancer and those who will be diagnosed this year and in years to come,” said NCCS Senior Health Policy Advisor and 41-year cancer survivor Ellen Stovall. This legislation can both empower patients and facilitate better care,” said Stovall.

Cancer a Growing, Complicated Health Issue for Older Americans

The nation’s commitment to biomedical research and therapeutic development has fostered important advances in cancer treatments. Thanks to these advances, there are now more than 12 million cancer survivors in the United States — four times the number of people who were living with a history of cancer in 1971, according to a 2011 report by the Centers for Disease Control and Prevention (CDC). This number is expected to grow, especially among the elderly population. The National Cancer Institute (NCI) projects that by 2020, there will be 11 million cancer survivors who are 65 years or older, a 42 percent increase in ten years alone.

But even with the hope of a longer life expectancy or cure, cancer care is complex, highly variable and challenging. It is usually multi-disciplinary, involving surgeons, medical oncologists, radiation oncologists and others. Most cancer patients also need aggressive interventions to address the side effects of treatment, which can occur well into survivorship and be long-lasting. Strong communications and coordination among providers and patients are needed.

The 2006 IOM report on cancer survivorship, From Cancer Patient to Cancer Survivor: Lost in Transition, delves into the challenges faced by cancer survivors, especially when they move beyond active treatment. The IOM recommends that patients completing primary treatment for cancer be given a comprehensive care summary and follow-up plan that is clearly and effectively explained. The 2011 IOM report, Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care, counsels that patients would benefit from a document that details diagnosis, stage and treatment options, including short-term and long-term treatment outcomes and potential side effects.