5 Ways to Manage Inflammatory Bowel Disease (IBD) Medical Bills

5 Ways to Manage Inflammatory Bowel Disease (IBD) Medical Bills

As president and CEO of the Crohn’s & Colitis Foundation, I am deeply troubled by the findings of our recent healthcare access survey.

 The results paint a stark picture of the financial challenges faced by individuals living with inflammatory bowel disease (IBD) in the United States.
Our survey, which included responses from more than 2,200 people with IBD and caregivers, revealed that more than 40 percent of patients have made significant financial sacrifices to afford their healthcare. These sacrifices include:

  • 30 percent giving up vacations or major household purchases
  • 22 percent increasing their credit card debt
  • 21 percent cutting back on essentials like food, clothing, or basic household items
Financial barriers directly impact health outcomes and quality of life among people with IBD, with consequences extending far beyond monetary concerns. Our survey revealed that among people prescribed medication for their IBD in the past year, a majority of them faced significant challenges. Nearly two-thirds (63 percent) reported difficulty obtaining their medication due to cost, leading to nonadherence to prescribed regimens. Additionally, 66 percent of people had worsened health as a result of these medication access issues.

These statistics highlight a troubling reality. Many people with IBD are forced to choose between managing their disease and meeting basic needs, such as buying groceries or other essential items. IBD, which includes Crohn’s disease and ulcerative colitis, affects approximately 1 in 100 Americans, and this number is expected to rise.

 With such prevalence, these financial challenges are particularly concerning given the sheer number of families they impact.

Take Ian Goldstein, 33, a comedian, writer, and social media ambassador for the Crohn’s & Colitis Foundation, who lives with Crohn’s disease. Ian is still paying off a surgery from 2021, when 2 feet of his small intestine were removed to clear strictures that had formed over a decade which caused problems like bowel obstructions and constant pain. Last July, he literally threw a party after meeting his healthcare deductible.

Despite reaching this milestone, Goldstein worries about his medicine not working, potentially causing another bowel obstruction that could lead to an emergency room visit or emergency surgery that could upend his finances.

“There have been times when I’ve delayed paying bills or started new payment plans just to afford my medication and treatments,” says Goldstein. “It’s a constant juggling act between managing my health and maintaining financial stability. I worry about future expenses. I worry about how my disease will be managed as I get older and my premiums and deductibles continue to rise. It’s a reality that many of us with IBD face every day.”

While advancements in IBD treatments have improved disease management options, systemic reforms are urgently needed to address the inequities in healthcare access. These reforms include:

  • Insurance reforms to reduce restrictions like prior authorization and step therapy, which requires patients to try and fail on less expensive medications before accessing costlier doctor-prescribed treatments
  • Drug pricing reforms to address the high cost of biologics and other specialty medications
  • Expanding patient protections through federal legislation to complement state-level reforms

However, these changes face significant barriers, including resistance from insurers as well as the complexities of implementing policy reforms across diverse healthcare systems.

5 Ways to Manage Your IBD Costs Now

Goldstein’s story — and the stories of thousands like him — reminds us why this work is so important. No one should have to choose between managing their health and maintaining financial stability. Despite the progress we’ve made with IBD research and treatment options, many people still struggle to access the care they need without facing undue burden.

As a community, we must continue to advocate for reforms that ensure that all people with chronic illnesses, including IBD, can access necessary medications without financial hardship. While systemic change takes time, there are still steps you can take today to protect your finances and alleviate some financial strain while managing your IBD or other chronic illness.

  1. Explore patient financial assistance programs. Many pharmaceutical companies offer financial assistance programs that provide discounts or free medications for eligible patients. The Crohn’s & Colitis Foundation’s IBD Help Center is available to help you navigate this process and provide guidance on available assistance options. You can also check with your healthcare provider or visit drug manufacturer websites for details.
  2. Understand your insurance benefits. Familiarize yourself with your plan’s coverage details, including which providers are in network and what preventive services are fully covered. This can help you avoid unexpected costs.
  3. Negotiate medical bills. If you receive an expensive bill, contact your healthcare provider’s billing department to discuss payment plans or potential discounts based on financial hardship.
  4. Consider generic or biosimilar alternatives. When appropriate, ask your doctor about switching to less expensive generic drugs or biosimilars that are equally effective but cost significantly less than brand name drugs and biologics.
  5. Use the Crohn’s & Colitis Foundation’s Copay Accumulator tool kit. Health insurance companies’ copay accumulator programs can prevent drug manufacturer copay assistance from counting toward your deductible or out-of-pocket maximums. The Crohn’s & Colitis Foundation’s Copay Accumulator tool kit provides resources to help you navigate these programs effectively and advocate for your rights as a patient.

The views and opinions expressed in this article are those of the author and not Everyday Health.

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