Navigating the Maze: Barriers to IBD Care and the Path Forward

When Dr. Ariel Jordan started medical school in 2017, she didn’t imagine she’d become an advocate for people living with inflammatory bowel disease (IBD). 

But one day when she went to the pharmacy to pick up her usual medication for her ulcerative colitis, she was shocked to find out it would now cost $1,000. Unable to afford it, she called her insurance company and was approved for a cheaper alternative.

“They said it should work the same,” Dr. Jordan recalls. “But it didn’t. I immediately went into a flare and was unable to attend school due to my symptoms.”

Although her doctor eventually secured her original medication for a few months, the cycle of insurance battles continued. “It feels like it will never end,” she says.

Dr. Jordan’s experience is far from unique. A new survey by the Crohn’s & Colitis Foundation sheds light on the barriers to accessing healthcare for IBD patients across the country. The findings paint a troubling picture of the sacrifices and difficulties experienced by those living with this chronic condition.

The survey reveals that more than half of respondents prescribed IBD medication faced problems accessing their treatments due to health insurance issues. For many, this meant delays of a month or longer in receiving critical medications, with some unable to obtain them at all. The consequences can be dire with approximately half of those experiencing delays that impacted their daily activities, including work, school, and caregiving responsibilities.

The financial toll is also glaring. More than 40% of patients reported making significant financial sacrifices to manage their healthcare costs, including cutting back on food, clothing, or basic household items; increasing credit card debt; or postponing vacations or major household purchases. 

Like Dr. Jordan, 25% faced step therapy, or fail-first, mandates, which force patients to try and fail on another medication before getting their prescribed treatment. Those living in areas of concentrated poverty were even more likely to experience poor health outcomes when subjected to step therapy mandates.

Dr. Jordan, now a practicing gastroenterologist herself, contributed to this national survey and emphasizes the impact of these findings. “The physical toll of the disease is compounded by financial stress and the constant struggle to access appropriate care. It’s an ongoing cycle that can severely impact a patient’s quality of life and overall health.”

The Crohn’s & Colitis Foundation is using these findings to call on policymakers, healthcare providers, and community stakeholders to join in addressing these challenges through several key measures:

Reform Pharmacy Benefit Manager (PBM) Practices: PBMs often receive rebates from drug manufacturers, which can lead to higher drug prices for patients. The Foundation proposes changing this system so that PBMs are paid a flat fee for their services instead. This would remove the incentive for PBMs to favor more expensive drugs and help lower overall drug costs.

Enhance drug pricing transparency: Implement measures to ensure patients and healthcare providers understand the true costs of medications, including the total share of cost that patients will have to pay. This includes enabling doctors to inform patients about drug costs during office visits, allowing for more informed decision-making.

Reform step therapy mandates: Step therapy requires patients to try and fail less expensive treatments before insurers approve more costly ones. This practice can delay access to the most effective medications, negatively impacting patient health outcomes.

Improve access to biosimilar drugs: Biosimilars are nearly identical versions of biologic drugs and can be less expensive. However, they are often placed in a less preferred category on formularies (lists of covered drugs) because PBMs receive larger rebates for brand-name drugs. The Foundation advocates to ensure that biosimilars are given fair placement on formularies to increase competition and assure that savings are passed on to patients.

“This survey provides concrete data to support what many of us in the IBD community have known for a long time,” says Cassie Ray, Director of Advocacy at the Crohn’s & Colitis Foundation. “Now, we have a roadmap for change and we invite you to join us in our advocacy efforts to make these essential reforms a reality.”

For people like Dr. Jordan, the survey's findings offer hope for positive change for her patients. “As a doctor, I am an advocate for my patients and want to work towards a healthcare system that truly serves those who need it most.”

The full study is published in Inflammatory Bowel Diseases.