The human and financial challenges inherent in a cancer diagnosis were the focus of a candid panel discussion held on Nov. 19 at the Doubletree hotel in Somerset produced by Cancer Support Community of New Jersey and sponsored by BeOne.
Experts—including a hematologist-oncologist, an advanced practice nurse and a patient caregiver—shared their front-line experiences dealing with insurance denials, treatment delays and the crucial role of patient advocates in navigating an often-overwhelming health care system.
Moderated by BINJE Managing Editor Linda Lindner, the panel featured:
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Dr. David Gallinson (Hematology – Oncology, Robert Wood Johnson Health / Cooperman Barnabas Medical Center)
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Anne Marie Shaftic, APN (Hematology – Oncology, John Theuer Cancer Center)
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Michele Ashworth (Caregiver)
Gallinson opened the discussion by describing his role as the physician who puts the diagnostic puzzle together and guides the patients onto their journey. However, a major recurring roadblock is the financial toxicity—the stress and anxiety caused by the cost of care and insurance hurdles.
Gallinson stressed that while he manages the patient-facing side of care, the process of securing treatment approval requires an extensive “village” of staff behind the scenes to handle complex logistics.
The physician highlighted the baffling reality that in health care, “pre-approval is not a guarantee of payment,” and patients often don’t know their final financial obligation until long after treatment has begun, unlike purchasing a car or other major item.
He described frustrating scenarios, including:
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A clinical trial requiring a specific FDA-approved drug, which the insurance company denied, offering only a “me too” drug on their formulary, resulting in the patient being unable to join the trial.
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A patient with a rare disorder being denied access to a potentially life-saving trial because the trial site did not accept their insurance.
Michele Ashworth, whose husband was diagnosed with Chronic Lymphocytic Leukemia (CLL) at age 39, provided a powerful caregiver perspective. She detailed the emotional trauma of the diagnosis, the “wait and watch” period of CLL, and the logistical nightmare of dealing with insurance denials.
Ashworth recounted two instances where necessary scans were initially denied by her insurance company. In both cases, the hospital ultimately “ate” the cost, prioritizing the patient’s health, but illustrating a systemic failure.
She now maintains a meticulous spreadsheet of claims and Explanation of Benefits (EOBs) to manage the unexpected bills and high out-of-pocket maximums. “You have to try to plan for that extra out of pocket,” she noted, explaining that she maxes out her Flexible Spending Account (FSA) card yearly to help manage medical expenses.
Ashworth strongly recommended that anyone receiving a diagnosis find an advocate and “be persistent.” She found personal healing by volunteering as a caregiver first responder, talking to others who are going through similar experiences.
Both Gallinson and Anne Marie Shaftic, APN, discussed the difficulties of securing quick approval via peer-to-peer (P2P) reviews—a process where a treating physician argues the case to the insurance company’s representative.
Shaftic noted that P2P calls often involve speaking to representatives who follow a rigid script and lack oncology experience, even sometimes getting a radiologist or pediatrician to review a chemotherapy request.
Gallinson added that P2P conversations often stray from evidence-based medicine and devolve into a “cost game.” He advocated for the NCCN guidelines (National Comprehensive Cancer Network), compiled by top cancer centers, to serve as the definitive standard for approving treatment, arguing that high-level NCCN evidence should automatically suffice for payment.
“I kind of feel lost… I want this conversation to be what is best for the patient, not as what is the most cost effective?” Gallinson summarized.
The panel agreed that a supportive advocate is essential, particularly for the elderly population who may lack the energy or tech-savviness to fight denials. Gallinson noted that he tries to anticipate family dynamics and rarely delivers serious news one-on-one, instead asking the patient to “phone a friend” or ensure a support person is present to absorb and process the complicated information.
