Many cancer patients are getting inappropriate care, whether it be too little care, or too much care in the form of unnecessary procedures. Various cancer control and treatment strategies, such as regular screening for cervical cancer and breast cancer in women over 50, are underutilized. Differences in treatment for underserved populations have been well documented as supported by a recent study which found that women on Medicaid are three times more likely to die of breast cancer than women not on Medicaid.
Comprehensive data systems do not currently exist with which to measure quality, and there is no national cancer care program or system of care within the United States. Like other chronic illnesses, efforts to diagnose and treat cancer are centered on health care providers, health plans, and can be in multiple settings. Coordination among these entities is often lacking, and the responsibility for navigating through the system often rests on the individual with cancer.
One-half of cancer patients die of the diseases. Unfortunately, appropriate end-of-life medical and social support, which would help maximize the quality of life for these individuals and their families, is often unavailable. This is particularly true for children.
"Although 1,500 people die each day from cancer, increasingly, individuals with cancer survive their disease," said Senator Collins. "The more than nine million cancer survivors in the United States face unique care needs, including post-treatment programs and support, which are often inadequately addressed by a system focused on diagnosis and disease treatment."
This legislation would address issues of inadequate cancer-patient care by: • Defining the problem. The bill will draw together Federal agencies and private entities to coordinate the development and collection of information on quality of care.
• Measuring disparities in care. Surveys currently conducted through the Centers for Disease Control collects information on incidence and prevalence of cancer. These surveys will be expanded to better monitor quality of care and to highlight disparities in care. In addition, public and private partnerships will be developed to design innovative model systems for research on quality of care.
• Improving care through State cancer plans. States will receive funds to develop and improve state-wide cancer control programs that address particular needs for each state.
• Improving care through better coordination. Two programs will be developed to help individuals with cancer receive quality cancer care. The first provides individual case-managers to help get patients into the system or to act as contacts throughout the continuum of care and assist with information, referrals, and care coordination within the system. The second improves coordination between doctors, hospitals, and other health care professionals so that individuals with cancer receive seamless care throughout their treatment.
• Improving palliative care. Palliative care, which includes pain and symptom management and psychosocial care, is an area where individuals with cancer have traditionally received relatively poor-quality care. The bill will develop programs to provide palliative care and train professionals to provide better palliative care for both adults and children.
• Initiating programs to address the unique needs of survivors. The bill develops post-treatment programs including follow-up care and monitoring to improve the long-term quality of life for cancer survivors, including children.
• Creating programs to improve end-of-life care. The bill provides grants to coordinate end-of-life cancer care and train health care providers in end-of-life care. Pilot programs will also be developed to address the special needs of children.
• Developing training curricula. The bill will conduct evaluations concerning the delivery of care, develop curricula based upon these findings, and ultimately provide recommendations for training protocols for fellowships to improve the quality of cancer care.
• Evaluating the effectiveness of new initiatives. Reports will be developed by the Institute of Medicine to evaluate quality cancer care programs and gaps and impediments to quality care.