From Health Policy Expert to Patient: The Perils of Navigating Insurance

Read the first blog in the series. 

Since my diagnosis with eosinophilic esophagitis (EoE) in 2015, I have tried several drug combinations to manage this rare chronic condition, which causes my esophagus to narrow, making swallowing difficult and painful. None of these drugs were specifically developed for treating EoE — they were prescribed “off label” — until the Food and Drug Administration (FDA) approved Dupixent in 2022 as the first-ever on-label treatment.  

Due to job changes and other circumstances, I had five different insurance plans over this time, each of which imposed a variety of policies that created barriers to me accessing these medicines. In this blog post, I will explore these challenges as emblematic of rare disease patient experiences and discuss the unintended consequences of a convoluted policy framework not designed with the patient in mind. I hope the stories I share will shed light on the critical need for patient-centered public policies related to medication access.  

Rare Diseases Are Expensive 

Last year, due to increased dysphagia (trouble swallowing) and episodes of food getting stuck in my esophagus, I needed an esophagus dilation. In this procedure, my doctor inserts a tool called an endoscope down my throat to stretch the narrowed area. This would be my ninth dilation in as many years. Excluding physician and biopsy fees, each procedure cost between $8,000 and $13,000. Fortunately, over the years, my share of this cost has ranged from $500 to $2,000. Here’s a fun fact: In 2022, for the second time, I reached my personal out-of-pocket insurance maximum by the end of summer because I had two esophagus dilations in one year. 

When I met with my wonderful doctor after my first dilation last year, she had a strange look of sadness on her face. She explained that my esophagus was only 5 millimeters in width, about the size of a pencil-top eraser, and the endoscope is 5.6 millimeters. For context, the diameter of a normal adult esophagus stretches to about 25 millimeters, or the size of quarter, and my “normal” is 15 millimeters, or roughly the size of a dime. She could only stretch my esophagus to 9 millimeters that day. “You will have to come back in six to eight weeks. Honestly, I can’t believe you could swallow anything,” she said.  

I was dejected. The procedure is painful, and I dislike undergoing anesthesia, so this treatment option has never been ideal. Yet, this is what life is like with a rare disease that is not well-managed, even while adhering to off-label therapy regimens and dietary restrictions to limit exposure to my allergens (milk products and nuts). Another procedure would mean more pain, more anesthesia, more time off from work and family, and more costs, but it would not necessarily offer me much in terms of improved outcomes. Yet I did it, a few months later. 

This procedure is one of many costs associated with my disease. For example, depending on my insurance plan, I might have to visit both a gastroenterologist and an allergist to be prescribed two off-label, medications, one branded. Furthermore, artificial versions of dairy products tend to be more expensive (and less flavorful) than their authentic counterparts. Having a rare disease is expensive, and navigating the insurance process is very difficult, even for somebody like me who made their career in health policy.  

Unfortunately, when insurers and policymakers think about the costs and benefits of prescription drugs, they often don’t consider the broader picture of overall medical and non-medical costs of disease, nor do they consider outcomes that are important to patients. For example, the benefits to me of a treatment that works include more time with my family at dinner (rather than managing the unsettling effects of being unable to swallow food) and pain-free swallowing overall. If a treatment improves my health and wellbeing while bringing other medical costs down, covering the treatment should be automatic and not subject to multiple insurance plan processes. 

Trial and Error 

Access challenges plagued my experience as a patient.  

One insurance company denied a claim for me to use a brand-name medication off-label, even though the medication (a corticosteroid) was listed in EoE treatment guidelines. The drug cost about $100 a month, without insurance, at the time. To get my insurance to let me try this medicine, I spent an hour with a claim’s agent, as did my gastroenterologist, explaining why I needed the medication. This was not an efficient use of three peoples’ time. In the end, they did cover it. 

Later, I changed to a health plan that also served as the provider of medical care and prescription medicines. At the time of the switch, I was being somewhat successfully treated with the corticosteroid. However, my new insurance outright refused to pay for this off-label, branded drug. The insurer suggested I go through a step therapy process that would require me to try and fail on a series of drugs that I had already tried, with no hope of getting to back to the brand-name medicine that worked for me. At that point, I opted out of my insurance entirely and ended up paying $56 out of pocket per month with the use of a well-known drug coupon card. I am fortunate that I have the means to do so, and that the coupon price was not significantly more. This experience is illustrative of why health care disparities remain so difficult to address on a national scale. 

I dreaded every time I needed to switch insurance providers because I knew that as a rare disease patient being treated with off-label therapy, it was likely I would face denied claims or delayed access. 

Barriers to Accessing On-Label Therapy 

These years of failure are why I was so elated when the FDA approved an on-label therapy for EoE. Yet, it still took me more than a month to get Dupixent after it was prescribed.  

To be fair, I currently have an excellent medical plan, and my copay for Dupixent is very reasonable. But local pharmacies don’t typically carry expensive biologics for rare conditions. Those medicines come from specialty pharmacies. My insurance would only fill Dupixent through one specific online specialty pharmacy. Since the prescriber sent the prescription to my usual pharmacy, I turned to the patient assistance program to sort out the situation after failing myself. In a future blog, I will explain the benefits of patient assistance programs, as they provide many valuable services to patients beyond financial support, and how Dupixent is working for me. 

Read the third blog in the series.