The Biden-Harris Transition and Cancer Patients
The Cancer Support Community (CSC) looks forward to working with the Biden-Harris Administration in a collaborative and transparent manner to put patients first. As such, CSC has created and shared with the Biden-Harris Administration a transition document that asks the incoming administration to consider a variety of recommendations and guiding principles in order to advance innovation, collaboration, and urgency in the fight against cancer, and protect and promote access to affordable and comprehensive health and cancer care.
Cancer and COVID-19
The COVID-19 pandemic has tested the nation’s public health, economic, and safety net infrastructure in new and significant ways. The impact of COVID-19 on all individuals, particularly those impacted by cancer and other chronic illnesses, must be understood and addressed. There is evidence that people impacted by cancer are more vulnerable to COVID-19, as well evidence that cancer screenings have plummeted during the pandemic. As we continue to care for the millions of Americans impacted by COVID-19, we also must brace for the potential swell in the number of individuals diagnosed with cancer and cancer cases diagnosed later or with a poorer prognosis.
Further, services to prevent, diagnosis, and treat COVID-19 should be offered at no- or low-cost to anyone impacted by the virus.
Access to Health, Mental Health, and Cancer Care
More people are living with cancer than ever before, with over 16.9 million survivors in the U.S. today. That number is expected to increase to 22.1 million by 2030 with 41% of Americans receiving a cancer diagnosis in their lifetime (American Cancer Society, 2020). Cancer patients, survivors, and caregivers must have access to affordable, comprehensive, high-quality, timely health care. As the United States healthcare system continues to evolve, CSC supports the following recommendations:
Access: Individuals impacted by cancer must have access to timely, high-quality, and comprehensive health care.
Affordability: Individuals impacted by cancer must be able to afford and maintain their health insurance coverage and prescription medications.
Racial Justice, Health Equity, and Non-Discrimination: Individuals impacted by cancer must receive equitable treatment within the U.S. healthcare system
Patient-Centered Care: Individuals impacted by cancer must receive patient-centered care that is aligned with their needs and preferences.
Prevention and Early Detection Services: Individuals should have access to no- or low-cost preventive care including, at a minimum, coverage that provides for well services, cancer screenings and testing, immunizations, nutrition services, and opportunities to engage in an active lifestyle.
Psychosocial Health Services: Individuals impacted by cancer must have access to high-quality, comprehensive, and timely psychosocial health care services.
Quality: Individuals with cancer must be able to utilize high-quality health care services that are effective, efficient, and safe.
Research: Individuals with cancer benefit from a well-funded, robust research infrastructure.
Triple Aim: Individuals with cancer deserve health care that achieves the goals of the triple aim.
Clinical Trial Design and Enrollment
Clinical trials provide individuals with cancer and other serious medical conditions the opportunity to participate in ground-breaking research that may bring about treatments that improve quality of life, extend survival, and even prove lifesaving. CSC believes in the commitment, need, and urgency to ensure the broadest and most inclusive patient participation possible in clinical trials while maintaining safety and efficacy standards. Clinical trials must be offered in communities where patients reside and be made affordable to all patients, regardless of insurance type or status. Additionally, the full range of patient experience data should be collected in clinical trials and reported to the public. As the comprehensive care conversation evolves and becomes more inclusive of the patient, we must expand our assessment of patients to include more than disease symptoms, treatment side effects, and physical functioning. Patients should be partners in clinical trial design.
Data Sharing and Data Standards
In a 2019 study, CSC found that cancer patients and survivors were largely willing to share deidentified medical data and were most motivated by a desire to help other cancer patients (Franklin et al, 2019). Patients need to understand the purpose for sharing their data and must have complete trust that their information will be used expressly for that purpose and that purpose only. They must be assured that their identity will be kept confidential and private and that there will be no tracking without their consent. Patients should be openly acknowledged as practice and research partners, receiving feedback on the use of their data and results of research studies and other initiatives.
Patient navigation has a proven track record of removing barriers and improving care for cancer patients, particularly those from disenfranchised populations such as communities of color and those with lower incomes. Navigation has been shown to support more timely treatment initiation, enhanced adherence to cancer screening and care, improved quality of life, increased patient satisfaction, decreased hospital readmission, and emergency department utilization. Navigation is a vital component of high-quality cancer care and should be integrated across the care continuum and reimbursed in order to ensure sustainability.
American Cancer Society. (2020). Cancer facts and figures 2020. Atlanta, GA: Author. Dai, M., Li, D., Liu, M., Zhou, F., Li, G., Chen, Z…& Cai, H. (2020). Patients with cancer appear more vulnerable to SARS-CoV-2: A multicenter study during the COVID-19 outbreak. Cancer discovery, 10(6), 783-791.
Franklin, E. F., Nichols, H. M., House, L., Buzaglo, J., & Thiboldeaux, K. (2020). Cancer patient perspectives on sharing of medical records and mobile device data for research purpose. Journal of Patient Experience, 1-7.