Panel Links Quality of Life to Financial, Time, and Clinical Toxicity

Financial hardship, time burden, and missed treatments are increasingly understood as clinical toxicities, not just social problems, according to a panel of oncology leaders at the 2026 Patient-Centered Oncology Care® conference. Moderator Zahra Mahmoudjafari, PharmD, MBA, BCOP, FHOPA, clinical pharmacy manager for hematologic malignancies and cellular therapies at University of Kansas Health System, guided a wide-ranging discussion of how community and academic practices can reduce toxicity and protect quality of life.

Treating Financial Burden as a Toxicity

Barbara McAneny, MD, CEO of New Mexico Oncology Hematology Consultants, said she first grasped the scale of financial toxicity around 2000, when a patient who was 3 years post transplant told her the cure had cost him his business, his children’s college fund, and his house. One study found that medical events trigger roughly two-thirds of bankruptcies,¹ she noted, and most of those affected have insurance. Cost-of-care debates, she added, rarely account for what patients and families pay out of pocket.

Hospital admissions are a major trigger of spending, so McAneny’s practice built aggressive triage pathways to catch warning signs early and intervene in the office. The practice also employs financial navigators, whom she distinguished from clinical navigators. “If you need to beat an insurance company into submission, you need a different skill set,” she said.

Since 2002, a practice foundation has covered nonmedical needs such as car and roof repairs, but not drugs, copays, or medical care. Patients learn quickly that “disclosing gets you help,” she said.

Susan Sabo-Wagner, MSN, RN, OCN, NEA-BC, vice president of clinical innovation at American Oncology Network, said the problem becomes clinical when patients who cannot afford co-pays, supportive medications, or child care miss appointments and therapy. Validated screening tools such as a stress thermometer can help. But the key is simply asking—and practices must ask repeatedly, because a patient’s job, insurance, or family situation can change within months.

Dosing for the Long Haul

Turning to the FDA’s 2021 shift from maximum tolerated dose toward optimal biological dose (Project Optimus), Evan Slater, PharmD, pharmacy director at Rocky Mountain Cancer Centers, said the goal is to keep patients on therapy. “This is a marathon, not a sprint,” he said. For a practice in value-based models such as the Enhancing Oncology Model, tolerable dosing can lower drug spend and prevent hospitalizations at once.

Practice is another matter. Prescribing information has not changed, and physicians may hesitate to go off label, in part due to liability concerns if a patient does poorly on a lower dose.

Beth Faiman, PhD, MSN, APN-BC, nurse practitioner in the Department of Hematology and Medical Oncology at Cleveland Clinic, said her clinical trial experience has made her quick to reduce doses when adverse effects emerge, which she believes improves adherence. Quoting a familiar maxim, she said drugs do not work in patients who do not take them, and she regularly asks about physical, financial, and social barriers.

Patient-Reported Outcomes Need a Plan

A discussion on electronic patient-reported outcomes (ePROs) drew a mix of enthusiasm and caution. Sabo-Wagner said they are valuable for early intervention, particularly as community practices begin offering bispecifics and CAR T-cell therapy, but only if they come with defined pathways: who receives the data, who acts on it, and who responds at 2 AM. Otherwise, she said, a symptom logged 3 days earlier that nobody addressed creates liability without benefit.

McAneny agreed, warning that ePROs can become “an electronic sticky note” no one sees until evening. Despite instructions not to use portals for emergencies, patients still send messages reporting fevers of 103 °F. Her practice gives acutely ill callers a warm handoff to a nurse, uses on-call physicians after hours, and answers routine medical calls within an hour. “Communication is 2 ways,” she said.

Faiman said her academic practice collects patient-reported outcomes during visits, so a high distress score can prompt the immediate involvement of a social worker. Questionnaires completed 2 days before an appointment are where problems arise, she said.

Closing the Trial Data Gap

Mahmoudjafari noted that trial populations skew younger and healthier than real-world patients. Faiman said disparities extend to geography and race, with Black patients often making up about 4% of trial participants.² She wears a pin reading “just ask” to counter clinician bias, and said many sponsors and payers reimburse travel, food, and lodging.

McAneny described the economics behind the gap. Her Albuquerque clinic enrolls 10 to 20 patients a month in trials, while the same physicians at her Gallup clinic, in the heart of the Navajo Nation, enroll none. She called it the “who’s going to feed the sheep problem”: when a family has 1 vehicle and ranching depends on daily labor, a trial visit can cost the household its livelihood, even with gas cards. She also questioned strict blood sugar and creatinine requirements for drugs cleared by the liver. Because manufacturers cannot give money directly to practices or patients, she helped establish the Cancer Safety Net Foundation, which has helped 7 of 30 practices set up local foundations.

Sabo-Wagner said the controlled environment of academic centers differs sharply from the community, where chimeric antigen receptor (CAR) T-cell therapy, bispecifics, and trispecifics are arriving. She suggested giving community sites access to more real-world evidence studies, which could also improve accrual among underrepresented groups.

Survivorship, Nutrition, and Mental Health

For nutrition and psychological support, McAneny said her practice has used remote partners, including Agilix Health for nutrition and Colla Health for behavioral health. Screening patients for distress and referring them cost the practice and patients little, she said, though she criticized a CMS proposal that she said would require such support staff to be directly employed by the practice.³

Survivorship is harder. Primary care physicians often lack time or interest in complex cancer survivors, McAneny said. Faiman said survivorship clinics for breast and lung cancer have succeeded using advanced practitioners and nurse coordinators with strategic care pathways, and that these services are reimbursable. Sabo-Wagner said smaller community practices may have no navigators or social workers, and that static printed survivorship plans do not serve people diagnosed at aged 35 or 40 years whose screening needs will change over decades.

Getting Ahead of Toxicity

Asked what a toxicity-focused system looks like, Slater said the field has been too reactive. “It’s too late once they’ve hit the [emergency department],” he said. He called for robust baseline education and having supportive care medications in patients’ hands before they need them.

McAneny closed with a challenge on cost. Studies have shown that hospital-based care costs 2 to 5 times as much as community oncology,⁴ she said, and society must find another way to fund academic centers’ training and research mission while supporting independent practices. She also criticized pharmacy benefit managers that mail 3-month supplies of drugs patients may not tolerate. A 2014 New Mexico law lets her practice take back unused drugs and, with signed consent, give them to another patient.

References

1. Himmelstein DU, Thorne D, Warren E, Woolhandler S. Medical bankruptcy in the United States, 2007: results of a national study. Am J Med. 2009;122(8):741-746. doi: 10.1016/j.amjmed.2009.04.012.
2. Jaber N. How do Black people with cancer view clinical research? National Cancer Institute. November 15, 2024. Accessed November 3, 2026. https://www.cancer.gov/news-events/cancer-currents-blog/2024/black-patients-beliefs-clinical-medical-research
3. Parikh HP, Simone R, Greco J, Mutanuka-Hiebel M. Medicare proposes significant changes to remote patient monitoring and remote therapeutic monitoring services for CY 2027. Nixon Peabody Healthcare Alert. July 22, 2026. Accessed November 3, 2026. https://www.nixonpeabody.com/insights/alerts/2026/07/22/medicare-proposes-changes-to-remote-patient-monitoring-and-remote-therapeutic-monitoring-services
4. Mattina C. Report finds hospitals costlier for cancer care than community practices. AJMC. September 29, 2017. Accessed November 3, 2026. https://www.ajmc.com/view/report-finds-hospitals-costliest-site-for-cancer-care