2008 Policy Priorities

Nearly 12 million Americans are living with cancer, and more than 1.5 million are diagnosed with cancer each year. Improvements in cancer detection, diagnosis, and treatment have contributed to the significant increase in the number of cancer survivors. For some, cancer has become a chronic disease that requires ongoing and possibly long-term management by the oncologist. For many more, cancer remains an acute disease requiring aggressive treatment over a shorter period of time, and immediate decisions about treatment may be necessary. For all cancer survivors, there may be significant physical side effects from cancer and its treatments, including long-term effects. In addition, cancer survivors and their families and friends may experience crippling emotional effects from cancer and its treatment, and their relationships may be put under substantial stress. Finally, the threat of recurrence looms for many cancer survivors. All cancer survivors would benefit from information about treatment choices, assistance with evaluating treatment choices, and coordination of curative treatment and symptom management.

As the nation’s oldest survivor-led cancer advocacy organization, the National Coalition for Cancer Survivorship (NCCS) supports public policies and programs aimed at ensuring all Americans access to high quality cancer care. By persuading federal policymakers to adopt reforms that encourage the development, delivery, and financing of quality cancer care, NCCS seeks to improve the lives of cancer survivors and their families, friends, and caregivers.

NCCS public policy priorities for 2008 include:

Comprehensive Cancer Care Improvement Act (H.R. 1078)

The Comprehensive Cancer Care Improvement Act (CCCIA) would encourage the development of a system of comprehensive and coordinated cancer care (see our refresher on the legislative process). The goal of the legislation is to provide cancer survivors access to care that coordinates primary therapy with symptom management and to supply cancer survivors with information for making decisions about treatment and symptom management. A core provision of the bill is establishment of Medicare payment for development of care plans at the beginning of treatment and care summaries at the end of therapy, plans that are critical to helping cancer patients deal with treatment and survivorship.

Because nearly 60% of cancer diagnoses occur in the elderly, setting Medicare payment for cancer care planning will be of great benefit for seniors with cancer. Because Medicare payment practices customarily set a standard for private payers, the bill will also influence the quality of care in the system overall.

This legislation has 95 co-sponsors in the House of Representatives and is supported by 30 leading cancer advocacy organizations, 37 National Cancer Institute designated comprehensive cancer centers across the country, and the American Society of Clinical Oncology, the world’s leading professional organization representing physicians of all oncology subspecialties who care for people with cancer.

Provisions of the Act

The bill responds to recommendations from the Institute of Medicine, developed over almost a decade, regarding initiatives and programs that would improve cancer care quality.

Provisions of the Act would:

Establish Medicare payment for the development of a treatment plan at the beginning of treatment or when there is a change in the patient’s condition of therapy;
Set Medicare payment for a treatment summary that would also outline a plan for follow-up and monitoring for the survivor;
Authorize a Medicare demonstration project to evaluate the delivery of curative and palliative care without the limits that apply to hospice benefits.
Authorize grant programs to enhance professional training in comprehensive cancer care and to expand model systems for delivery of care that coordinates curative care and symptom management.

Express your support for H.R. 1078, the Comprehensive Cancer Care Improvement Act, with our simple tools for contacting to your Congressperson.

Survivorship Care Planning

NCCS is working with cancer survivors, oncologists, oncology nurses, social workers, cancer centers, payers, health care policy experts, and others stakeholders to develop model survivorship care plan templates and to make survivorship planning a routine part of cancer care.

In 2006 NCCS collaborated with the IOM and the Lance Armstrong Foundation (LAF) to host a workshop exploring best practices for drafting of survivorship care plans, and NCCS will remain involved in efforts to refine care planning templates.

Standards for Expanded Access Programs

NCCS supports action to finalize and implement rules proposed by the Food and Drug Administration (FDA) for patient access to investigational therapies. In December 2006, the FDA proposed new rules for expanded access programs in response to a citizen petition filed by NCCS and the American Society of Clinical Oncology (ASCO) requesting refinements in the patient access programs so that all participants – patients, physicians, and drug sponsors – would have greater clarity regarding the standards for these programs.

NCCS and ASCO commended FDA for its proposed rules, and NCCS encourages the agency to complete the regulatory process and implement the new rules.

NCCS does not believe that individual patients or the overall system of cancer care will be served by commercializing drugs that have not been proven safe or effective. NCCS does support a system that ensures efficient review of new therapies so they can reach patients promptly when safety and efficacy are proven and an approach to access to unapproved therapies that balances the treatment needs of individual patients and the preservation of the clinical trials system.

Promoting Quality Cancer Care

NCCS and ASCO have partnered to form the Cancer Quality Alliance, a multi-stakeholder entity to improve the quality of cancer care.

Founded in November 2005, the Alliance seeks to become a national voice for quality cancer care by:

Endorsing measures for quality improvement and accountability.
Enhancing mechanisms for data collection.
Promoting the development and adoption of oncology electronic medical records.
Endorsing a blueprint that defines optimal cancer care.

More information about the Alliance, its membership and goals can be reviewed at www.cancerqualityalliance.org.

NCCS also participates in many other efforts to improve the quality of cancer care, including work groups and task forces initiated and organized by the National Cancer Institute, American Board of Internal Medicine, Association of American Medical Colleges, National Committee for Quality Assurance, National Quality Forum, National Cancer Policy Forum, President’s Cancer Panel, American Medical Association, and Oncology Nursing Society.

Learn how you can influence your congressional representatives and senators regarding the need for quality cancer care.