A diagnosis of a chronic condition such as Crohn’s disease, ulcerative colitis, cancer, or diabetes can bring a swirl of thoughts and emotions. There may be relief at finding an explanation for bothersome symptoms, but that relief is often quickly overshadowed by insurance issues, financial concerns, and worry about the future.

If you’ve recently received a chronic diagnosis, take it one step at a time to navigate the road ahead.

Assemble a Team

Working to overcome the hurdles associated with a chronic condition diagnosis can be physically and emotionally draining. In addition to securing a doctor with expertise in treating your condition, you’ll need a support team of family and friends who can serve as a sounding board for your questions and concerns, help with everyday tasks when you’re feeling run down, provide transportation to appointments, and help keep your spirits up.

Understand Your Condition

Arming yourself with information is critical when you receive a life-altering diagnosis. It’s important to understand everything you can about the condition, including known causes, symptoms you may experience, what you can expect as the disease progresses, and more.

If the volume of information is overwhelming, try to consume it a little at a time so you can retain more and give yourself time to process everything you’re learning. As you read, be sure to make notes about things that are confusing or that you might want to discuss with your medical team.

Identify Treatment Options

A big part of your research will likely involve your treatment options. If your doctor has outlined multiple options for treatment, you’ll want to investigate each one thoroughly so you can understand the benefits and risks, as well as deciding which option is the best fit for your particular circumstances. You’ll also want to confirm that your treatment is covered by your health insurance and at what level.

Handle Insurance Issues

Most people assume that if they have health coverage, they can count on at least a portion of the treatments and medications their doctor recommends being covered. In many cases, that’s true, although the exact coverages depend on variables like your plan, deductible, and more.

However, there are also some circumstances in which you may experience a delay before you’re able to follow your doctor’s treatment orders. One example is step therapy – a protocol sometimes used by health insurance companies that requires patients to try and fail on one or more lower cost medications before they will provide coverage for the medication originally prescribed by the patient’s provider.

Step therapy is also known as “fail first” because it requires a patient to fail on an insurer-preferred drug first. For patients with inflammatory bowel diseases (IBD), like Crohn’s disease and ulcerative colitis, this protocol may result in worsened health outcomes. A survey by the Crohn’s & Colitis Foundation found that as many as 40 percent of IBD patients had been subject to step therapy, and 58 percent of those patients were required to fail two or more drugs before being granted access to the drug their doctor originally prescribed.

“During these delays in optimal treatment, patients are at risk, not only for their physical well-being, but also for their quality of life,” said Dr. Ross Maltz, co-chair of the Government and Industry Affairs Committee of the Crohn’s & Colitis Foundation’s National Scientific Advisory Committee. “In some instances, insurance policies can impede patient access to the care they need and affect the patient and provider decision-making process.”

Groups are working to change this process through legislative reform, but in the meantime, if you are subject to a step therapy requirement by your insurance provider, you can appeal. The best approach is to work with your doctor to prepare a written letter that contains:

• A clear statement that you are appealing a denial of coverage for your prescribed medication

• The name of the medication that was denied

• A detailed explanation of previous treatments or factors that led your doctor to prescribe the denied medication

• Any studies or evidence that support the use of the prescribed medication

• The specific health risks you experience now or may in the future without the medication that was originally prescribed

• A clearly stated request for approval of the specific prescription, including the medication name and dosage

Once your letter is finished, file it quickly and pay attention to dates. There can be time limits on how quickly you must file an appeal after a claim is denied. Make sure you keep copies of all correspondence from yourself, your provider, and your insurance company. Also keep a record of all names and titles of the individuals you speak to and any case or authorization numbers for reference in the future.

To find more information and resources, visit crohnscolitisfoundation.org/steptherapy.

When Insurance Impacts Health

When you have cancer, arthritis, or an inflammatory bowel disease (IBD) like Crohn’s disease or ulcerative colitis, you may encounter more than just the physical and psychological effects of the illness.

Take Brannen for example. When he was just 3 years old, Brannen began experiencing debilitating abdominal pain, nausea, and vomiting. At 4, Brannen was diagnosed with ulcerative colitis, a painful, medically incurable disease that attacks the digestive system and can cause delayed growth and development.

Brannen tried many different medications and treatment plans over the course of 10 months with results that ranged from ineffective to creating adverse reactions with intense pain and violent vomiting. He cried himself to sleep and struggled in school because he was so distracted by the pain and nausea.

Nearly a year later, Brannen finally found a medication that allowed him to resume a symptom-free life as a 5-year-old. He began to eat, gain weight, and grow again. However, his parents were then faced with another obstacle.

After six months on the medication that put him in remission, Brannen’s insurer denied further coverage. The insurance company subjected him to step therapy, the practice where a patient needs to fail one or more insurer-preferred medications before they will cover the one originally prescribed. For Brannen, this meant more pain, more nausea, and more days not being the carefree child he was learning to be.

When IBD patients like Brannen are subjected to step therapy, they can experience a delay in optimal treatment, which may cause worsened health outcomes, up to and including surgery and a decreased quality of life.