Patient Education Exchange: The Fears Keeping Patients With IBD From Starting Biologics

This is the second installment of Patient Education Exchange, a series spotlighting different disease states through the lens of both patient experience and clinical expertise. This edition focuses on inflammatory bowel disease (IBD) and is built around a conversation with James Marion, M.D., professor of medicine in gastroenterology at Mount Sinai, following a live patient panel discussion.

Three fears, not one

Marion said patients considering a biologic therapy tend to carry three distinct fears, and only one is really about side effects. The first is the belief that severe side effects, such as cancer or serious infection, are the most likely outcome. Marion said that direct-to-consumer advertising and even some pharmacists rarely explain that, for many newer drugs, the placebo group in clinical trials often has comparable or higher rates of those same “side effects,” a reflection of uncontrolled inflammation rather than the drug itself. He noted that older warnings, like decades-old black box labels for anti-TNF therapies, tend to stick in patients’ minds even after postmarketing data showed the real risk, such as lymphoma, was much smaller than first feared.

The second fear is stigma. Marion said being identified as someone on infusion or injection therapy for a disease, rather than for cosmetic reasons, carries a “primitive” self-stigma for many patients, especially those newly diagnosed within the past year, which is precisely the group that benefits most from starting biologics early. The third issue isn’t fear so much as fatigue: the ongoing effort of fighting insurers, specialty pharmacies and prior authorizations just to keep a prescription filled.

The real daily burden: Access

Marion described building a systematic approach to insurance battles over decades of practice, training staff to write prewritten letters of medical necessity and, more recently, using patient portal messaging so that roughly 95% of his patients never have to get on the phone themselves. He explained that drug manufacturers have their own incentives to reduce friction, whether through biosimilars, subsidized induction dosing or patient education, but that access can still break down when any one part of the system, the physician’s office, the insurer or the specialty pharmacy, fails to do its part. He pointed to newer every-two-week infused or injected therapies as a specific pain point, since some specialty pharmacies require patients to call in monthly just to release the next dose.

Meeting each patient where they are

Marion said the key to addressing these fears isn’t a single conversation but understanding what each patient individually brings: their level of comfort with medical complexity, their specific reservations and their access barriers. At his IBD center, patients also meet with a clinical pharmacologist who reviews real safety data and previews the access process, so patients are fully connected to the office before they start treatment.

A message rooted in decades of change

Asked what he’d want a patient still on the fence to hold onto, Marion drew on his own training in the early to mid-1990s, when IBD medications were far less effective and often toxic. He described watching undertreated disease interfere with relationships, fertility, education and careers. His message to patients today: While current medications aren’t perfect, the risks of waiting, and staying sick longer, are real and well understood, while the risks of starting treatment are often overstated. The core message he tries to deliver: The longer a patient waits to start an advanced therapy, the longer they stay sick, and the greater their risk of complications.

Why patient stories still matter, told differently

Marion said one strength of this format is that it avoids what he called the “clickbait horror show” of IBD, dramatic worst-case stories of disfiguring surgery or near-fatal complications that dominated galas and online forums in years past. While those stories are real, he said they aren’t illustrative of what happens to most patients today. He praised pairing a patient’s actual treatment journey with clinical context, since it shows a realistic and hopeful path rather than an outlier worst case.

His closing message for patients: Don’t give up, stay educated and demand answers from your doctor if you’re not getting them.