Legislative: Justice for All: The Next Big Breakthrough in Cancer Care

Over the past 24 months, the SARS-CoV-2 virus has poured across the globe, infecting more than 267 million people worldwide. A staggering 50 million people in the U.S. have been infected, accounting for more than 18% of the world’s known cases and exposing critical gaps in the U.S. healthcare infrastructure. The pandemic and ensuing response have cast a floodlight on many inequities ingrained in the U.S. healthcare system, and cancer care is no exception.

Underrepresented minorities, marginalized communities, undocumented individuals, and the under- or uninsured have been disproportionately affected by COVID-19, just as they have always been for cancer, enduring countless hurdles to timely screening, treatment, follow-up, and supportive care (American Association for Cancer Research [AACR], 2020; Makhlouf, 2019; National Academies of Science, Engineering, & Medicine [NASEM], 2020). These longstanding inequities that stem from unequal distribution of power and resources mapped into legislation, healthcare institutions and industries reflect a diseased system that values capital above the well-being of people. Along with a broken and neglected public health system that lacks required federal funding to make real progress toward health equity, it is no surprise that the health status of the U.S. remains suboptimal while the costs of cancer care and survivorship continue to grow (Berwick, 2020). Our professional code of ethics requires us to take immediate action to ensure that justice is the next big breakthrough in cancer care.

Big breakthroughs are not breaking through to most Americans. America’s response to COVID-19 mirrors what has been occurring in cancer care since its modernization over the last century. Advances in expensive technologies and treatments for some have taken precedence over ensuring access to prevention, screening, and guideline-concordant care for all (AACR, 2020). There has been an unbalanced focus on developing cutting-edge innovations that take far too long to reach people without insurance, financial means, trusted relationships, and geographic proximity to major medical and cancer centers that were built to improve the health of people. Even when patients are able to gain access to life-saving therapy, they are often left to decide the extent of debt they are willing to assume. Such polarizing scenarios occur so often that a new field of study—financial toxicity—has become well established in American oncology.

While advances in treatment are essential to win the fights against COVID-19 and cancer, we must come to terms with the inherent contradiction of a health system in which we invest most heavily in increasingly effective and personalized therapies that many cannot access and will never be able to afford. Cutting edge innovations with lifesaving potential unquestionably deserve investment; but if our goal is to save lives, the emphasis placed on these advances is outsized relative to the lifesaving reality of existing prevention, screening, and treatment modalities that many Americans still struggle to access due to social inequities in wealth, power and resource allocation. Disease, suffering, and premature death can be prevented right now, without extreme development risks, by investing in expanded access to the arsenal of healthcare tools that are already, ostensibly, standard of care. Fundamentally, we know this is the right thing to do, and we must take steps to do it now by funding—with the same unbridled enthusiasm and spirit of investment that accompanies biotech and other health industries—public health initiatives in which resources are directed by the communities they serve. While the nature of community public health partnerships necessitates that outreach and services take different forms in various communities, the following priorities can guide implementation:

Acknowledge that disparities in cancer care, as in other forms of healthcare, persist in the U.S. and are unacceptable. Recognizing that healthcare access is an individual right in America, not a privilege, America’s leaders and politicians, healthcare agencies and industries must be accountable for health justice in America and demonstrate their commitment through actions consistent with health equity and transparency. Yet even now, as our nation is in the midst of distributing the COVID-19 vaccine with the expressed goal of equity in mind, many communities continue to face major barriers to access because of healthcare and pharmacy deserts, and pitiful communications and transportation infrastructure borne out of racism and violence. Our country is quickly learning the lesson that opening one or a few healthcare access points is simply not enough. Tackling entrenched inequities requires long-term investment and partnership with and within communities, especially those in which racism, inequality, and discrimination have persisted for decades. Lessons learned from the pandemic must be applied now and going forward on how to equitably coordinate cancer care in America.

Make cancer prevention and screening accessible and relatable. As patients, all of us carry many intersecting identities that shape our relationships with individual healthcare providers and the system as a whole. Representation at the tables where resource allocation is decided, outreach materials are designed, and community health goals are set must be truly holistic with voices that speak from layered perspectives instead of for monolithically defined groups.

Implement practice models that address barriers to cancer care and facilitate enhanced access. Some health inequities have nothing to do with healthcare (Berwick, 2020; NASEM, 2020). The realities of limited transportation and childcare, work schedule inflexibility, inability to take time off without being fired, and inability to forgo a day of pay calls into question whether accessible healthcare can truly be accessed. Delivering cancer care at alternative times and settings, bundling care to reduce unnecessary visits, and other creative models that put patient convenience at the center should be the service norm (Cykert et al., 2019).

Re-evaluate federal and state laws and institutional policies that result in inequitable access to cancer care. By congressional statue, negotiation on drug prices between pharmaceutical companies and the Health and Human Services (HHS) Secretary is not allowed. The result is an unregulated system between drug manufacturers who set their own list price for each drug, and pharmacy benefit managers (PBMs) and insurers that negotiate a net price for people with insurance or Medicare while reaping the reward of their negotiation. These kinds of policies—undoubtedly influenced by political conflicts of interest—are unconscionable; the consequence leaves millions of Americans without access to life-saving medications. This problem extends beyond cancer medications and should be addressed immediately by: amending the non-interference clause of the Medicare Modernization Act of 2003 to allow HHS Secretary negotiations on drug pricing with authority to impose financial penalties on entities that do not comply; legislating price caps on life-sustaining medications and biologics; mandating pharmaceutical companies to position affordability as a priority by demonstrating drug effectiveness at the minimum dose / rate of absorption, which can significantly influence medication costs.

The COVID-19 pandemic presents opportunities to improve health equity in the U.S. now, and trial innovative public health measures and models of care as prototypes for fair and equitable access to cancer care prevention, screening, and treatment going forward. The thousands of deaths and millions of lives affected by COVID-19 must not be in vain. Instead, let us finally hear the siren that has long been sounding: the laws and practices that dictate who is most at risk for cancer and who is most likely to suffer and die from it must change. The American priority of leading the world in groundbreaking cancer treatment must be matched with equal innovation in equitable access. Only then will America begin to live up to the promise of justice for all.

Authors

Angela Starkweather, PhD, ACNP-BC, CNRN, FAAN
Email: angela.starkweather@uconn.edu

Angela Starkweather is Professor and Associate Dean for Academic Affairs at University of Connecticut School of Nursing and has been an active nurse clinician and nurse researcher focused on improving symptom management for patients with acute and chronic conditions, including cancer, and developing interventions to improve patient outcomes.

Bevin Cohen, PhD, MPH, MS, RN
Email: bac2116@cumc.columbia.edu

Bevin Cohen is Director of Research and Evidence Based Practice at The Mount Sinai Hospital. As a nurse and epidemiologist, Bevin conducts research on delivery of nursing care to patients with a focus on making health care delivery more seamless, patient-focused and with better outcomes.

Tamryn F. Gray, PhD, RN, MPH
Email: tamryn_gray@dfci.harvard.edu

Tamryn F. Gray is an Instructor in Medicine at Harvard Medical School within the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and the Department of Medicine at Brigham Women’s Hospital. She is a research scientist within the Phyllis F. Cantor Center for Nursing and Patient Services Research and holds a clinical-administrative role as a Clinical Nurse Specialist in the Division of Stem Cell Transplantation and Cellular Therapies, Department of Medical Oncology at Dana-Farber Cancer Institute.

Janice Phillips, PhD, RN, CENP, FAAN
Email: janice_phillips@rush.edu

Janice Phillips is Associate Professor, Department of Community, Systems, and Mental Health Nursing, College of Nursing, at Rush University. As an experienced clinician, researcher, educator, and public policy advocate, Janice works across the specialties of oncology, public health, women’s health, healthcare disparities and research administration.

Lauri Linder, PhD, APRN, CPON, FAAN
Email: lauri.linder@nurs.utah.edu

Lauri Linder is Associate Professor at the University of Utah College of Nursing and Clinical Nurse Specialist at Primary Children’s Hospital in Salt Lake City, Utah. Her research focuses on symptom management and supportive care for children, adolescents and young adults with cancer.

Katherine A. Yeager, PhD, RN, FAAN
Email: kyeager@emory.edu

Katherine (Kate) A. Yeager is Associate Professor at Emory University’s Nell Hodgson Woodruff School of Nursing. Her research is focused on symptom management with an emphasis on pain management especially in underserved communities.

Mary E. Cooley, PhD, RN, FAAN
Email: mary_cooley@dfci.harvard.edu

Mary E. Cooley is a Nurse Scientist at Dana-Farber Cancer Institute, Phyllis F. Cantor Center, Research in Nursing and Patient Care Services. Dr. Cooley’s research interests focus on enhancing symptom management and quality of life during treatment for cancer and enhancing health promotion and behavioral change after the diagnosis of cancer, and particularly in the context of lung cancer.

Noah Zanville, PhD, BSN, BA
Email: noah.zanville@hcahealthcare.com

Noah Zanville is a Nurse Scientist Scholar at HCA Mission Health at Mission Health. As a nurse scientist, clinical researcher, and data scientist, his research is focused on facilitating organizational performance in high-priority research needed to deliver exceptional outcomes, train staff, and develop policy.