If we surveyed nurse and patient navigators around the country and asked them if one of their primary job responsibilities includes policy advocacy, it is unlikely that question would be met with a resounding “yes.” Yet, every person engaged in oncology navigation is also engaged in patient and policy advocacy each and every day.
Navigation is inherently an advocacy activity, and navigators are at their very core advocates. Whether they are serving as a liaison between the patient and their medical team, leading an appeal with an insurance company, or screening a patient for distress, the end goal is always the same—working with and on behalf of patients and their loved ones to help navigate and manage the complexities of cancer care. Navigation was born from a need for knowledgeable, assertive, trustworthy advocates within healthcare systems to serve as trusted allies to patients.
Direct navigation skills are easily transferrable to broader policy advocacy, and navigators should consider if, in fact, policy advocacy should be a central professional responsibility. This translates to seeking systemic and institutional changes to benefit patients and survivors. It also means protecting and promoting the profession of patient navigation.
Regardless of political party, the policy environment at both state and federal levels has become extraordinarily challenging, particularly in the realm of health and cancer care. Our systems are expensive and byzantine and are neither particularly patient- nor provider-centered. Reforming our healthcare system has proved as simple as moving the Titanic. In fact, many of the following challenges have led to the emergence of navigation as a profession.
The Need for Advocacy
More people than ever are being diagnosed with cancer, with over 15.5 million survivors alive in the United States.1 That number is expected to increase to 20.3 million by 2026 and 26.1 million by 2040.1 While patients today have a wider range of treatment options than ever before, they also face more complex systems, more scientifically complex information, and a host of decisions that can have significant impacts on various outcomes, including their physical, psychosocial, and financial health and well-being.
Access challenges persist, in part because of a fragmented system that is not prepared to handle an aging population (many of whom will be diagnosed with cancer at some point in their life). Further, the competition for scarce resources continues to put high-quality, affordable care out of the reach of many.
The United States has, by far, the highest per capita spending on healthcare within the industrialized world,2 accounting for 18% of gross domestic product.3 The costs of cancer care have nearly doubled over the past 2 decades4 and now account for 5% of total US healthcare spending.5 It has been estimated that cancer costs will increase 27% from 2010 levels to $157.8 billion in 2020.6 The costs of care to patients can be devastating. Approximately one-third of cancer survivors go into debt, and 3% file for bankruptcy as a result of their disease.7
Eight years ago, the Patient Protection and Affordable Care Act (ACA) was passed into law. Although far from perfect, the ACA provided numerous patient protections. For the first time in history, patients with a history of cancer could no longer be discriminated against, and a host of preventive services would be covered free of charge. However, since passage of the law, access challenges continue to persist. In a 2016 study, the Cancer Support Community8 found that patients were most concerned about high out-of-pocket costs, deductibles, premiums, and copays for their medications; not having enough information to make decisions about insurance; having to travel long distances to receive care; or limited or no access to their healthcare team or their hospital of choice. One-fourth of patients felt they did not receive the care they needed.
In 2018, patients continue to feel the repercussions of not only an imperfect healthcare system but ongoing attempts to repeal the ACA, with no viable alternatives in place.9 Patients are struggling, confused, and angry. Navigators hear their stories firsthand and support them as they seek to traverse the labyrinth of cancer care. Whether we recognize it as such, navigators are constantly learning about policy barriers directly from patients as they experience them. Navigators develop policy solutions, and while they aren’t always legislative initiatives or regulatory fixes, they do impact the lives of patients each day. The Academy of Oncology Nurse & Patient Navigators (AONN+) Policy and Advocacy Committee exists to capture this work, take our seat at the decision-making table, and continue to strengthen the profession so patients can receive the care they need. We argue that there is a professional responsibility to magnify the challenges facing patients, amplify our creative solutions, and engage in policy advocacy from the micro to macro levels.
AONN+ Policy and Advocacy Committee
It was this line of thinking that led AONN+ to launch the first Policy and Advocacy Committee. The mission of this committee is to utilize legislative, regulatory, and policy advocacy to protect and promote the practice of oncology patient navigation to best serve individuals and families impacted by cancer.
Launched earlier this year, the committee’s inaugural goals are to: (1) promote access to comprehensive, timely, affordable, and high-quality cancer care for all patients through public policy and grassroots advocacy; (2) identify policy opportunities to advance the patient navigation profession; (3) develop grassroots tools and encourage AONN+ members to engage in policy advocacy; and (4) work with allied organizations on policy issues of common interest.
Since its launch, the committee has gained a total of 7 diverse members representing nurse navigation, patient navigation, and social work. Bringing a range of expertise and experience to the committee, members stretch across the country from rural areas in the west to metropolitan cities in the northeast. Yet, each committee member joined for 2 reasons: (1) the belief that the profession of patient navigation is integral to the healthcare system and must be protected and promoted; and (2) the understanding that many of the challenges facing cancer patients are exacerbated by decision-making at broader systems and policy levels.
Cancer Leadership Council
One of the first actions of the committee was to join the Cancer Leadership Council (CLC), one of the nation’s leading oncology policy and advocacy coalitions. Formed in 1993, the CLC is composed of dozens of patient advocacy organizations, professional societies, and research groups dedicated to ensuring that cancer patients have access to high-quality care. Issues of ongoing concern to the CLC include: (1) initiatives to enhance the quality of cancer care; (2) development of appropriate systems of care for cancer survivors; (3) implementation of healthcare reform; (4) adequate funding for biomedical research; (5) appropriate third-party coverage of cancer therapies; and (6) improvements in the process for approval of new anticancer therapies.
The committee also joined with 11 organizations in sending a letter to the Trump Administration regarding the Department of Health & Human Services’ Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. This letter focused on the impact of high costs on cancer patients and began by outlining a set of guiding principles that encouraged the administration to improve overall access, affordability, and stability in the healthcare marketplace, placing patients at the center of any policy changes and ensuring that such changes are transparent and understandable. The letter focused on areas including: (1) the potential negative impact (in terms of patient safety and out-of-pocket costs) of moving oncology and supportive drugs from Medicare Part B to Part D; (2) the patient impact of policy changes on manufacturer and charitable copayment discount cards; (3) the potential of value-based arrangements to improve patient care while lowering costs; (4) the evolution of the 340B Drug Discount Program; (5) the potential negative impact of changes to Medicare Part D formularies or the Six Protected Classes policy; and (6) issues impacting patient access, affordability, and transparency. The full letter can be found at: https://aonnonline.org/press/1887-hhs-blueprint-to-lower-drug-prices-and-reduce-out-of-pocket-costs.
The committee is excited to begin the next phase of our work. This will include the creation of a guiding principles document that outlines our approach to policy work, both in terms of advocacy to protect and promote the profession of navigation as well as advocacy with and on behalf of cancer patients, survivors, and their loved ones. We will be exploring ways to meaningfully engage AONN+ members and request information regarding the policy impacts that they witness as they work with patients.
AONN+ Domains of Knowledge
An ongoing goal will be to ensure that the committee is serving as a representative voice on behalf of the Academy. One way we will work to ensure that this goal is met is by determining how the work of this committee connects to the AONN+ Domains of Knowledge. Clearly, it is linked with the domain of Patient Advocacy/Patient Empowerment and, as noted throughout this article, advocacy can (and arguably should) be a fundamental professional role and responsibility. However, policy and advocacy work can also improve clinical care coordination, operations management and development, and quality improvement as navigators utilize their experience and expertise to create systems that meet the values, needs, and priorities of patients. Navigators must also serve as advocates as they engage in community outreach and seek to identify and serve as a liaison to community resources. Ultimately, we would like AONN+ members to view policy and advocacy work as a way to augment their professional skill set. AONN+ defines the key areas that measure the success of navigation programs as patient experience, clinical outcomes, and business performance or return on investment. We believe that policy and advocacy work can contribute to each of these metrics by ensuring that healthcare systems are constantly evolving to meet patient needs and providing the highest quality services while stretching scarce resources.
Join the Committee
- National Cancer Institute. Statistics. https://cancercontrol.cancer.gov/ocs/statistics/statistics.html. 2016.
- Institute of Medicine. Value in Health Care: Accounting for Cost, Quality, Safety, Outcomes, and Innovation. Washington, DC: National Academies Press. 2010.
- Adelson KB, Velji S, Patel K, et al. Preparing for value-based payment: a stepwise approach for cancer centers. J Oncol Pract. 2016;12:e924-e932.
- Batty N, Shatzel J, Wiles S, et al. Deficiencies of methods applied in cost effectiveness analysis of hematological malignancies. Journal of Cancer Policy. 2014;2(2):40-44.
- Schnipper LE, Bastian A. New frameworks to assess value of cancer care: strengths and limitations. Oncologist. 2016;21:654-658.
- Mariotto AB, Yabroff KR, Shao Y, et al. Projections of the cost of cancer care in the United States: 2010-2020. J Natl Cancer Inst. 2011;103:117-128.
- Banegas MP, Guy GP Jr, de Moor JS, et al. For working-age cancer survivors, medical debt and bankruptcy create financial hardships. Health Aff (Millwood). 2016;35:54-61.
- Cancer Support Community. Access to Care in Cancer 2016: Barriers and Challenges. www.cancersupportcommunity.org/sites/default/files/uploads/policy-and-advocacy/patient-access/csc-access-to-care-barrirs-challenges.pdf. 2016.
- Kirkwood MK, Hanley A, Bruinooge SS, et al. The state of oncology practice in America, 2018: results of the ASCO practice census survey. J Oncol Pract. 2018;14:e412-e420.