Drawing on a series of studies and interviews with patients and caregivers, UCLA researchers from the UCLA Center for Health Policy Research and the UCLA Jonsson Comprehensive Cancer Center have published recommendations for California policymakers and patient advocates aimed at improving care and outcomes for women with metastatic breast cancer.
More than 30,000 women in California are diagnosed each year with this cancer, which has spread from the breast to other parts of the body. Survival rates are low, and patients often face significant hurdles to care — particularly in the areas of health insurance, clinical trials and palliative care — that could be remedied through policy changes, the researchers say.
"Battling metastatic cancer is difficult enough for any person, and we should be breaking down the barriers that stand in the way of providing the best care possible," said lead author AJ Scheitler, director of stakeholder relations at the health policy research center. "Our work aims to offer state-level policy solutions that should be further explored."
These potential solutions emerged, in large part, from the researchers' 2020 study of barriers to care, which was presented to the California Breast Cancer Research Program and incorporated insights from interviews with a broad range of patients, health care providers and other stakeholders, as well as from patients' social media discussions. The interview responses and narrative data led to the discovery of a variety of obstacles, from high costs of care to a lack of support services.
The team then distilled their findings into informational policy sheets — available in English, Spanish and Chinese — that provide policy recommendations in those areas where improvements are most critical:
Removing health insurance obstacles
Obtaining approvals for treatment from insurance companies was cited as a major stressor by both patients and health care providers, due primarily to the time requirements and complexity of the process and patient fears that switching insurance plans could reduce their coverage. "I trust that if a drug has been approved for stage 4 cancer and an oncologist want to use it on me, we should just get it," said one patient. "But that's not how the world works."
Recommendations: Because of the need for timely treatment, prior authorization requirements and step therapy procedures should be eliminated altogether for metastatic cancers — and should be improved for other cancers.
Read the fact sheet in English | Spanish | Chinese
Improving participation in clinical trials
Trials aimed at evaluating new medical treatments are crucial to patients, but many respondents cited a lack of awareness and user-friendly information about trials, difficulties getting to trial sites and confusion over whether the costs are covered by insurance. The authors further note that enrolling diverse racial and ethnic groups has been a persistent challenge.
Recommendations: Increase investment in programs that boost trial participation among Black and Latino patients and expand insurance assistance to cover costs associated with trials, such as travel expenses.
Read the fact sheet in English | Spanish | Chinese
Increasing access to palliative care
Often misinterpreted as just end-of-life care, palliative care — including pain management, psychological and social support, nutrition guidance and functional rehabilitation — helps patients manage their symptoms and improve their quality of life.
Recommendations: Better integrate palliative care and support services with cancer treatment, provide palliative care training to clinicians and educate patients about the benefits of this type of care.
Read the fact sheet in English | Spanish | Chinese
Overall, the insights we gained from patients and others who had a wide variety of perspectives showed us that there's a lot that can be done to improve the cancer care experience for this group. "Removing the barriers to care is vital — and doable," said co-author Riti Shimkhada, a senior research scientist at the health policy research center. "By improving access to and awareness of clinical trials and palliative care programs, and removing the hoops patients and clinicians face in accessing treatment, we have the potential to improve quality of life for patients with metastatic breast cancer."
The UCLA Center for Health Policy Research will host a webinar on barriers to metastatic breast cancer care today, April 28, at noon PDT.
