Nurses should initiate financial conversations with patients early and offer resources to improve access to cancer care, speakers at the ONS Center for Advocacy and Health Policy’s third annual policy summit on November 13, 2018, concluded. The event, held at the Hyatt Regency Hotel on Capitol Hill in Washington, DC, brought together nurses and industry and government experts to address the issue of financial toxicity in today’s cancer care.

ONS President Laura Fennimore, RN, DNP, NEA-BC, implored nurses to stop thinking of financial conversations as a taboo topic and to readily engage upfront with questions to assess affordability concerns.

“Oncology nurses play an important role in coordinating care for patients through their cancer journey, including helping to mitigate barriers to quality cancer care,” ONS Chief Strategy Officer Michele McCorkle, MSN, RN, explained.

What Nurses Can Do to Help Patients Afford Care

Typical cancer cost burdens include high deductibles, copays, coinsurance, transportation, parking, gas, childcare, housing costs, and loss of wages from missed work and function because of cancer side effects (e.g., fatigue, neuropathy), ONS member Darcy Burbage, MSN, RN, AOCN®, CBCN®, an oncology nurse navigator in Newark, DE, said. She said that nurses need to normalize the conversation to find out if patients have had a change in income or can no longer afford care and should reassure patients that raising financial concerns will not adversely impact their quality of care. Nurses must also educate their patients on cancer treatment affordability and resource availability.

ONS member Mary Anderson, BSN, RN, OCN®, an oral oncology nurse navigator in Louisville, KY, advised nurses to help patients organize financial information in a single place to give them a greater sense of control, to respond immediately to calls from specialty pharmacies, and to be their own healthcare advocates. When copays are prohibitive, she said patients may skip doses or not adhere to medications, harming their health outcomes. Some drug companies offer to pay the entire cost of a drug for those meeting poverty criteria, and Anderson recommended financial assistance resources from the American Society of Clinical Oncology, Association of Cancer Community Centers, and American Cancer Society.

Nurses face overwhelming administrative burdens as they manage prior authorizations, denials, appeals, medical leave, and long-term disability paperwork, ONS member Bobbie Jo Khan, MS, RN, OCN®, an oncology nurse in Washington, DC, said. She encouraged nurses to seek counsel from senior nurses, to engage with social workers on nonclinical aspects of care (e.g., rent, transportation), and to seek out less costly alternative treatments.

Nancy Corbitt, BSN, RN, OCN®, CRNI, ONS member and survivorship nurse navigator in Baltimore, MD, said that patients participating in clinical trials need to understand their insurance and patient costs upfront because manufacturers are not allowed to waive copays in trials. She added that survivors may be financially burdened for many years while paying for treatment of long-term effects.

Industry Challenges Contribute to Financial Toxicity

Patient Advocate Foundation Chief Executive Officer Alan Balch, PhD, shared survey data showing that patients with cancer want meaningful financial conversations about treatment costs upfront, but he acknowledged that accurately ascertaining such costs is difficult. He discussed state initiatives of concern that prohibit manufacturer copay assistance cards from accumulating toward a patient’s deductible.

Mike Ybarra, MD, FAAEM, FACEP, vice president of medical affairs for the Pharmaceutical Research Manufacturers Association, said the drug industry opposes a newly proposed Medicare Part B drug model based on international drug prices that could reduce provider reimbursement and harm patient access. He was critical of pharmacy benefit managers (PBMs) that do not pass along manufacturer rebates to consumers.

What Patients Should Know About Medicare and Insurance Cancer Coverage

When using private insurance, Georgetown University research professor JoAnn Valk, MA, in Washington, DC, said that patients need to be reminded that they may need to pay out-of-pocket charges for care from out-of-network providers.

Judith Gorsuch, JD, vice president at Hart Health Strategies in Washington, DC, raised concerns that Department of Health and Human Services (HHS) may consider future Medicare restrictions on off-label use for some oncology products and on certain cancer drugs currently in protected classes. She pointed out that patients with Medicare or Medicaid are not permitted to use manufacturer copay assistance cards to defray costs. Additionally, she said that a proposed HHS regulation to require drug list prices to be disclosed in TV ads is not likely to help patients because list prices are misleading.

In a post-election analysis, Tim Yehl, principal at Hart Health Strategies, predicted that the healthcare issues that helped elect new Democrats to the U.S. House of Representatives will lead to heightened oversight hearings scrutinizing the Trump administration’s healthcare and prescription drug cost reform proposals.

Connect Patients to the Right Resources

A summit highlight was hearing Jeannine Walston, a 20-year brain cancer survivor and patient advocate, share her struggles as a young working person and the stress her treatment had on family members. Her resource recommendations for patients, based on her own experience, are in Figures 1 and 2.