“We found that, overall, patients with IBD have higher costs compared with those without a diagnosis of IBD,” says study author Caren Heller, MD, chief scientific officer at the Crohn’s & Colitis Foundation. Those costs, she says, include related hospitalizations or visits to the emergency room (ER); therapies, such as opioids, steroids, or biologics; and IBD-related medical conditions outside the digestive system, such as anemia or psychiatric illness. If you have Crohn’s, here’s what you should know about how to manage the cost of your disease.
1. Crohn’s disease can cost about $30,000 the first year of treatment alone.
During the year after diagnosis, Crohn’s disease costs an average of $30,000, according to the research study. “While the paper does not describe the reasons for costs specifically in the first year,” says Dr. Heller, “we believe this might be due to diagnostic testing, increased ER and office visits, and treatments to get the disease under control once diagnosed.” Much of the bill is covered by health insurance, so chances are, you won’t be on the hook for the full amount. Still, people with IBD incur $2,213 in out-of-pocket costs per year on average, the study suggests. “It is so important that you understand what your insurance covers and the process for approvals,” says Heller. “Work closely with your doctors, who have staff in their offices to help you through the process.” Dr. Vaughn advises that if you are on chronic therapies, you can expect to meet your insurance deductible each year. “Most patients who are on infusions or injections usually meet their deductible within the first month or two of the year, because these infusions cost thousands of dollars,” he says, “and you get a few of them — usually five or six — throughout the year.” Your health insurance will pick up much of the tab, but it can be difficult to predict how much they’ll pay. “We don’t really know what the pharmacies and the hospitals are paying to the insurance companies, because it’s not transparent,” says Vaughn. He adds that the introduction of biosimilar drugs — those that imitate but are not exact replicas of the original drug — may bring change, as they have the potential to save costs. Sticker shock is totally normal, but remember that your doctor is recommending your treatment for a reason. “First and foremost, your doctor wants you to be well and will prescribe a course of treatment based on your needs,” says Laura D. Wingate, executive vice president of education, support, and advocacy for the Crohn’s & Colitis Foundation. “If the cost of your prescribed treatments is of concern, talk to your provider.” Ask about generic and biosimilar options, for example. Healthcare providers often have staff members, including nurses or social workers, who can guide you toward resources, such as free or reduced-cost drug programs, copay support programs, and other social services that assist patients and families, says Wingate.
3. ER visits can double your healthcare costs.
For people with Crohn’s disease, costs are twice as high with an ER visit than without — an average yearly cost to the insurance company of $37,759 for the former and $15,237 for the latter. To reduce your risk of an ER visit, work closely with your healthcare provider on your care plan, says Wingate. Discuss steps to follow if your disease gets worse, so you know your options other than the ER, she says. “For instance, your physician may offer early morning appointments for those experiencing urgent symptoms overnight,” she says. Then prepare yourself so you know where to go if an emergency does happen. Look up the ERs in your area ahead of time and see which are in your insurance network, so you can avoid out-of-network costs, she suggests. Urgent care centers also have lower costs than ERs. “You should also research in-network providers and emergency departments in destinations when you are traveling or away from home,” says Wingate.
4. People with IBD who have mental health disorders can incur twice the costs.
If you’re being treated for mental health conditions in addition to IBD, the costs to your insurance company could be $35,740 per year, according to the study by the Crohn’s & Colitis Foundation. This is compared with $18,520 for people with IBD who aren’t being treated for mental health. “Throughout the disease journey, living with a chronic illness can take a toll on a person’s mental health and emotional well-being,” says Wingate. You can experience depression, anxiety, and emotional responses, such as denial of disease, poor self-image, feelings of isolation, and stress, she says. What’s more, emotional health can affect physical health. “While it can be difficult to broach the subject, it is very important to address the emotional and mental toll of living with IBD with a healthcare provider,” she says. To prepare and make the most of the discussion, write down your symptoms and questions. Schedule a follow-up appointment with a mental health professional if your doctor recommends it.
5. Anemia can add to the cost of Crohn’s disease.
Anemia — a condition where a person lacks enough healthy red blood cells, which carry oxygen throughout the body — is a common complication of Crohn’s disease, according to Mayo Clinic. That’s because people with Crohn’s can have trouble absorbing iron, a mineral found in food that helps your body produce red blood cells. Crohn’s & Colitis Foundation research suggests that IBD patients who develop anemia pay 8 percent extra in healthcare costs. To help control the costs associated with anemia, work with your doctor to manage your disease, says Wingate. “It is important to make your doctor aware of your symptoms and have an open dialogue to determine the causes and potential treatments,” she says. Your doctor can order blood tests to diagnose you and, if applicable, find the cause of the anemia. Depending on the cause, your doctor might recommend iron supplements or intravenous iron infusions or work with you to control the disease with the right medication.
6. When insurance companies change their formularies, you can end up with unexpected bills.
Each year, insurance companies renegotiate their formularies, which are the lists of drugs that they cover. If your insurance company takes your medication off the formulary, you might have to pay out of pocket, switch drugs, or work with your healthcare provider to convince your insurance company to make an exception for you. “It requires the patient being proactive and being in communication with their insurance company and their physician so that we can write letters of support and make sure that we have all the paperwork in order,” says Vaughn. Many of these companies offer services, such as nurse navigators or social workers, to help navigate this process.
7. Crohn’s disease can have costs beyond its price tag.
Dollars are not the only way to figure out the costs of Crohn’s. “When we try to measure cost, it can be difficult to measure indirect costs, such as days of work or school missed,” says Vaughn. “If patients’ [symptoms] are not well controlled, they can miss a lot of work. We frequently have people go on short-term disability, or FMLA [Family and Medical Leave Act], while they are having a flare to get them into remission.” Medications can be costly, but they can also help you get back into the rhythm of life, which is valuable.
8. The costs of Crohn’s disease may rise as you get older.
After you pass the one-year mark after diagnosis, the costs of Crohn’s disease stabilize for a few years, the Crohn’s & Colitis Foundation study suggests. But, about seven to eight years after diagnosis, the costs rise again. It’s important for you to engage in healthy lifestyle practices, such as eating a healthy diet, avoiding smoking, and staying up to date on flu shots and vaccinations, says Wingate. “There may need to be modifications to diet and exercise routines when a patient is experiencing a Crohn’s (or ulcerative colitis) flare,” she says. “We encourage patients to work closely with their healthcare provider to make modifications when necessary and to ensure routine health needs like exams and vaccinations are scheduled.” The Crohn’s & Colitis Foundation offers health maintenance checklists to make these conversations and tracking routine medical care and vaccinations easier, she says.
9. You can save money and hassle by asking for help.
If the cost of Crohn’s disease has you feeling down, know that you are not alone. In a study published in November 2019 in the Journal of Clinical Gastroenterology, most people with Crohn’s disease reported experiencing at least mild financial stress. Fortunately, many resources exist to help you navigate this situation. If you see a bill that doesn’t make sense, go to the source and question it, says Vaughn. It’s not uncommon for a mistake to happen. “There’s the pharmacy, the healthcare provider, the pharmaceutical benefits manager, and the insurance. There are a lot of moving parts,” he says. “It’s not surprising that there are errors.” One area that commonly confuses patients is the distinction between medical benefits and pharmacy benefits in healthcare insurance coverage. “Some medications like infusions actually fall under your medical benefits, where injection medications will fall under your pharmacy benefits, and they can have a very different copay and deductible structure,” says Vaughn. Read the terms of your policy closely and call the number on your card if you need clarification. If you have employer-based health insurance, your human resources office can be helpful, too. The Crohn’s & Colitis Foundation also has resources. “Understanding complicated insurance coverage items, securing financial assistance, or obtaining adequate health insurance to cover healthcare costs may be challenging for those with Crohn’s disease or ulcerative colitis,” says Wingate. “However, there are programs and other resources that can help you navigate these plans and manage your expenses.” And remember that a dialogue with your healthcare provider is key. “While your doctor is first and foremost there to tend to your health, they and their staff can help you find resources to help offset costs,” says Wingate.
