IBD Patients Cited These Issues as Top Barriers to Care

SAN FRANCISCO — Inadequate appointment availability and difficulties with insurance were among the top reasons that patients with inflammatory bowel disease (IBD) delayed or could not access medical care or medications, according to a survey-based study.

The most common reason for delaying or not receiving care was not getting an appointment when they needed one, cited by 39% of respondents. More than half (56%) of patients reported delays in accessing their medication, reported Ariel Jordan, MD, of the University of Michigan Medical School in Ann Arbor, at the Crohn’s & Colitis Congress.

These findings especially highlight how “social determinants of health play a major role in patients’ ability to care for themselves, get their medications, and try to stay healthy,” Jordan said.

Jordan’s group conducted an online survey of U.S. patients with IBD and their caregivers over 5 months in 2023. The 2,281 complete respondents included 1,963 patients and 318 caregivers. Respondents were mostly non-Hispanic white (89%), female (68%), college-educated (68%), and insured (98%). More than half (60%) were ages 26-64, and only 7% lived in areas with concentrated poverty.

Another major reason patients delayed or did not receive care was waiting on insurance approval (26%). Also, 19% couldn’t reach the office or were too busy with work or other commitments. Other reasons included taking too long to get to the clinic (15%), being unable to visit the clinic during open hours (11%), difficulty finding a provider (9%), and lacking transportation (4%).

Medication access problems were common, including 39% of respondents who waited over 2 days for their prescription because of insurance approval delays. Nearly a third (30%) were denied coverage of a prescribed medication, and 28% spent over 2 hours on the phone trying to get their prescription. A quarter (25%) had step therapy or “fail first” requirements before getting the medication they needed.

Among those with delays accessing medication, 69% experienced an adverse health outcome, and 49% had negative effects on their daily life, such as work, school, or other daily activities.

Respondents also reported medication delays unrelated to insurance, including 24% who experienced clerical errors and 14% who couldn’t get an infusion at their preferred location. Other barriers included taking time off work to receive medication supplies at home, skipping a prescription because of possible side effects, or taking time to get a second opinion.

Jordan said she found it particularly striking what tradeoffs patients made to afford care. Nearly a third of patients (30%) put off a vacation or major household purchase so they could afford care. One in five increased their credit card debt (22%) or cut back on food, clothing, or other basic household expenses (21%). Other tradeoffs included using up most or all of their savings (14%), withdrawing from retirement or college savings (13%), borrowing money from family or friends (11%), and taking on an extra job or working more hours (10%).

“As you can see, patients are really trying to do what they can to afford their care, even if it’s really detrimental to them,” Jordan said.

Patients also reported multiple strategies to save money on medications, including asking for a lower-cost drug (24%), delaying prescriptions (23%), skipping prescriptions (21%), taking less medication (16%), skipping doses (15%), using alternative therapies (12%), and buying medications from another country (5%).

Regarding availability of IBD-specific resources, about six in 10 respondents had access to a patient liaison or navigator to help with insurance, and a similar proportion had access to an IBD surgical specialist. Just under half (about 45%) had access to a nutritionist, and only a third had access to clinical trials or a pharmacist to help with IBD medications. Less than 30% reported having access to emotional support, an ostomy clinic, or alternative medicine.

Jonathan Moses, MD, of Stanford Children’s Health in Palo Alto, California, said he was particularly struck by what resources patients found particularly helpful.

“You always think about big-ticket things, such as pharmacists and doctors and insurance companies,” but in fact, the highest cited resource was patient navigators, he said. “I think it really speaks to the burden of paperwork. We know about it, but to see it quantified is fascinating.”

He suggested that the clinical takeaway for the study is that finding and training someone in the clinic to help patients with that paperwork can be really valuable.

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