‘Critical Disconnect’ Between Cancer Research and Cancer Care

BETHESDA, Md—The United States can be proud of its scientific progress against cancer, but the nation has failed to adequately address the equally important issue of access to and delivery of quality cancer care, according to the President’s Cancer Panel (PCP).

“There is a critical disconnect between what we discover and what we deliver to the American public,” panel chair Harold P. Freeman, MD, told the National Cancer Advisory Board (NCAB).

In the PCP’s just-released 1999 annual report, the panel concluded that although cancer cannot yet be eradicated, the knowledge and technology to reduce the national burden of the disease exists. This knowledge is not, however, being fully or equally applied. “We, the panel, believe that this is not just a scientific and medical issue, but a moral and ethical issue,” he said.

The three-member panel devoted its efforts last year to a review of the National Cancer Program, which was created with passage of the National Cancer Act in 1971. Its report notes a significant change has occurred since then, a time when the federal government dominated the funding of cancer research.

Today, however, “private and volunteer sector funding of cancer research has exceeded the federal investment and resulted in a cancer research enterprise that is far more robust and market-driven,” the report said.

The panel noted a number of significant accomplishments that have emerged from what began as the “War Against Cancer.” Foremost is the understanding that cancer consists of more than 100 diseases. “The growth in knowledge about cancer biology and genetics that has accompanied this evolution—and the insights and interventions that have derived from it—are perhaps the greatest success of the national cancer effort since passage of the National Cancer Act,” the PCP report said.

Nonetheless, the panel found a need to mobilize public and political will to launch and sustain a full national drive against the disease. “The public is rightfully dissatisfied with the continuing high toll of death and suffering from cancer,” the report said. “Yet there is no consensus on what a full national effort should comprise, and this impedes progress against the disease.”

The panel noted the rising demands for better and more equal care, and argued that NCI was being unjustly blamed by some for this failure. “The NCI is being asked to answer for the consequences of insufficient application of discoveries about cancer and inadequate access to appropriate cancer care; as a research agency, it cannot solve these aspects of the cancer problem,” the report said.

It suggested that lawmakers and government agencies need to better address the problem. Moreover, “private providers and payors also [must] act in accordance with regulations to which they are bound” and not let their profit motive drive them “to provide only those ser-vices required by regulation or demanded by purchasers of care.”

Removing economic barriers to quality care will require public and private agencies and private insurers “to accept evidence generated by the research and clinical trials processes,” the panel said. “Further, the biases that underlie some disparities in access to and quality of care must be addressed.”

The report also noted the conflicts that arise between the two components of the National Cancer Program, the research arm and the effort that focuses on delivery of care. It said the two need to collaborate better to ensure that research findings are used to deliver quality cancer prevention and care.

“Failure to fully bring the benefits of research to the population has been a major weakness of the National Cancer Program,” the PCP concluded. “Lacking some form of collaboration or coordination, the current divide between the two is likely to persist.”

Finally, the panel said that combating cancer will require a comprehensive public education program “to overcome the public’s lack of awareness of or complacency about the magnitude of the cancer problem and our ability to reduce it.”

And, the PCP report added, reducing such cancer risks as smoking, a sedentary lifestyle, and an unhealthy diet must begin in childhood and be extended to all groups.

Three Recommendations

The cancer panel offered three broad recommendations to address the problems it found in the National Cancer Program:

• Removal of barriers that prevent research benefits and quality cancer care from reaching all segments of the population. “It is the responsibility of legislators and policymakers to enact laws and policies needed to ensure access to quality cancer care for all,” the panel said.

It called for mechanisms to ensure that all third-party payors understand and accept the “scientific evidence concerning the efficacy of preventive, screening, diagnostic, therapeutic, rehabilitative, and palliative cancer interventions” and that these services “are incorporated into the standard of care for all.”

The panel also urged “culturally appropriate public education campaigns” to raise public and professional awareness about cancer prevention and care.

• Public pressure to bring groups into the cancer effort that traditionally have not perceived themselves to have a role in the cancer problem. These groups include agriculture, the media, the food industry, and other industries and trade groups. “A first step in this process will be promoting public awareness of the actions of these sectors that perpetuate and exacerbate the national cancer burden,” the panel said.

• Better training and expertise of the cancer workforce. The PCP sees this need in prevention, rehabilitation, cancer control, communications, the use of new technologies, and end of life care.

Dr. Freeman concluded, “We need to train a diverse force of researchers and caregivers that mirror our population. There seems to be some bias in providing medical care. We don’t believe people are denying care to patients based on race intentionally, but there is an apparent problem.”