Improving Cancer Care for All: Real People, Real Problems
May 24-25, 2001

During hearings in Washington, DC, on May 24-25, 2001, the President's Cancer Panel heard that "learning you have cancer is like being at the top of a roller coaster with no handle bars and the bottom drops out." Cancer patients and their families need financial assistance, social support, and guidance in finding the best available care immediately after diagnosis. Instead, many are frustrated to find that their options are not explained and their survival is put at risk by delayed access to care.

This was the seventh and final regional meeting in which the Panel sought testimony from patients, survivors, family members, health officials, and health care providers to provide a human dimension to the problem of cancer-related health disparities. In this series of meetings, the Panel sought answers to the question "Why don't all Americans get the best available cancer care?"

Speakers in Washington echoed the concerns of those from other regions of the United States who testified about barriers that hinder access to quality cancer care. There is a critical need for better public education about cancer prevention and detection. Cultural factors, as well as "medical profiling" based on race and ethnicity, contribute to inequities in the health care system. Devastating financial problems-which are not limited to poor or unemployed Americans-result from inadequate insurance coverage. Patients who enter the health care system are often caught in "Catch-22" situations-for example, clients of community health centers must be diagnosed with a disease to become eligible for financial assistance, but they cannot afford to pay for the biopsy necessary to obtain that diagnosis.

Some of the stories the Panel heard focused on cancer symptoms that were either missed or dismissed at early stages. The public is still not well informed about the early warning signs of cancer, and many people ignore symptoms until cancer has progressed to a late stage. Once identified by patients, symptoms are often ignored or misinterpreted by health care providers.

Management of information is critical in cancer care. Many people do not know about the services and financial support that may be available to them. The Panel heard that luck is often the primary factor in successfully navigating the fragmented health care system. One speaker described cancer care as a "cottage industry" that treats isolated episodes of disease instead of delivering a coordinated spectrum of services. A Nurse Care Coordinator model to provides patients, families, and primary care physicians with one point of contact for the entire cancer care continuum was presented as an alternative to episodic care.

Tommy G. Thompson, Secretary, Department of Health and Human Services, provided examples of the Bush administration's commitment to the fight against cancer, including a proposed increase in the NIH budget and efforts to provide Medicare coverage for prescription drugs. He also highlighted the recent FDA approval of Gleevec, the first drug designed to treat cancer through molecular targeting.

The President's Cancer Panel is an advisory group established by Congress to monitor the Nation's efforts to reduce the burden of cancer. The Panel reports directly to the President annually on delays or blockages in that effort. The Panel has just completed a series of regional meetings to explore problems that prevent the best known cancer care from getting to all people. Participants in the Washington, DC, regional meeting included representatives from Delaware, the District of Columbia, Maryland, New Jersey, Pennsylvania, Virginia, and West Virginia. For more information, visit the Panel's web site at http://deainfo.nci.nih.gov/ADVISORY/pcp/pcp.htm, call 301-451-9399, or e-mail to pcp-r@mail.nih.gov.