Patients Over Profits: The Cost of Fail First Therapy

I agreed to sacrifice my health for research, not insurance company profits.

Cakelin Marquardt
Dec 13, 2019 · 6 min read

Cakelin is a scientist and writer for machines and humans. Their focus is on empowering diverse individuals and communities with their own data. You can find them @thecakelin most places, including Twitter.

Image of a “Prednisaurus Rex”, a green dinosaur with a prednisone molecule in its belly. By <cakelin/>
Image of a “Prednisaurus Rex”, a green dinosaur with a prednisone molecule in its belly. By <cakelin/>
Prednisaurus Rex: The dinosaur people turn into when on the steroid prednisone.

It is impossible to understand the damage that step therapy does until you’ve lived it.

“Step therapy is a practice where insurance companies force patients to try — and fail — a different medication before moving to the drug the doctor wanted the patient to take in the first place. These reform bills would allow for exceptions to that practice that has for years caused harm to patients with side effects and disease progression due to delayed appropriate treatment.”

-Charis Hill, a chronic disease advocate with AS

As Fail First Hurts explains “By limiting the medication options, both doctors and patients are forced to compromise their treatment decisions in a way that is dangerous, time consuming and more expensive in the long-term. With no limitations, fail first wreaks havoc on the lives of patients with chronic disease and their providers.”

At 22, I was a first year PhD student in Biochemistry at the University of Wisconsin. I was researching molecular interactions in autoimmunity. I was ecstatic to do intellectually rewarding work that would help people. People like my family, who all have one or more autoimmune and auto-inflammatory disorders.

A few days before Halloween, I tested positive for the gene marker HLA-B27. This marker is linked to several autoimmune and auto-inflammatory conditions. The most commonly known one is ankylosing spondylitis (AS). AS is an insidious disease. It can show up as low back pain or any number of symptoms, usually starting in a person’s early 20s. There’s usually a long delay in diagnosis, sometimes decades, until the damage can be shown on x-rays. MRIs are better at early detection, but the authorization hurdles and average cost of 2,600 are significant barriers.

Despite a positive genetic test result and overwhelming family history, my symptoms were not taken seriously. It was just “stress from grad school”. I saw countless doctors, had 23 x-rays and more additional labs than I could count. I had a wonderful primary doctor during these years. She was honest with me that many of the autoimmune disorders’ treatment side effects are second only to chemotherapy. Sometimes it’s even lower dose chemo, like the methotrexate my sister was on.

I was both lucky and unlucky that I knew so much about the effects of AS because I was a scientist with a strong family history. The main symptom of AS is a fusion of the vertebra in your spine over time, causing a hunchback and limiting the ability of your ribs to expand. I would describe the pain as feeling like your spine and other affected areas have termites. The only proven treatment to stop the bone growth and fusion is a biologic, which can cost many thousands of dollars a month. My dad tried to quit them more than once, each time sacrificing his health for our family’s financial stability.

Step therapy was more of a nightmare for me than the two flights of stairs to my lab that were much closer than the building’s only accessible entrance. My initial step therapy was indomethacin and the severe headaches it brought with it. NSAIDs ruined my stomach lining. The first treatment that “worked” was prednisone. My dad was on prednisone for most of my life. Prednisone is a steroid that causes severe side effects. I’ve seen my sister’s face almost twice its normal width because of the edema it causes, a phenomenon known as “moonface.” It also causes rage and irritability. I will let you imagine what it’s like to grow up with a parent on steroids in chronic pain. I fortunately got to skip getting the ole ’roid rage, but developed an odd preoccupation with wanting to jump off buildings. The extra aches and muscle weakness led my sister and I to identify as “prednisauruses” whenever we were on it.

An autoimmune drug called hydroxychloroquine tipped me over the quality of life cliff my second year. I woke up one day with a quickly spreading rash. Allergic reactions are different when you are reacting to a medication that’s built up in your system over time. I spent two weeks in a bathtub, with my partner pouring baking soda and oatmeal powder on me and bringing me food there. The Great Itchy Time of Fall 2012.

While I was catching up after two weeks of missed classes, TA duties and research tanked my health further. Before my preliminary exams, I sometimes needed help dressing myself. I would ice and wear braces on my wrists and was still struggling to continue typing. As a computational scientist, I needed my hands to write code to run experiments, quizzes for my students, grant applications and my 20-page, 100-source preliminary research proposal.

My desperation was an endless climb as I prepared to face my thesis committee for two hours of defending my proposed research. My partner attempted typing for me one night at my lab. My ability to use my hands was too tightly coupled with my ability to think. In the end, my code and thesis were powered by vicodin and ice packs.

Like many people with chronic illness or disability, my body’s needs, academic ableism, and our broken healthcare system collided. I left my PhD with a Masters in 2013. I finally put myself and my well-being before my dreams. The last thing I did as a research scientist was publish a paper on my family’s gene marker HLA-B27. This isn’t a part of the endless quest for society’s definition of success, but an intimate part of who I am.

In the end, diagnosis and adequate treatment took four years from disease onset. This is the average amount of time it takes for most AS patients to get diagnosed. Without my current rheumatologist and other UW health providers battling my insurance company’s step therapy requirements, I would not have been able to start Enbrel in 2015. I was denied twice. I lost hours of productivity at work during this process, even crying in front of my supportive boss once after a particularly weary maze of calls.

One of those denials relied on failing sulfasalazine first before being approved for a biologic. Sulfasalazine is not shown to reduce axial (spine) disease progression in AS. I also have a family history of allergic reactions to sulfa medications. Sulfasalazine would have been one more failed step therapy that traded my health for insurance company profits. I’m hopeful for a world where we realize that the cost of fail first medications for patients, their loved ones and their contributions to society is far greater than any savings for the health insurance industry.

Please join me, other patients, allies and numerous health advocacy organizations in supporting the bipartisan Safe Step Act H.R.2279 . This bill will give patients like me and doctors like my rheumatologist options to appeal step therapy requirements. A companion bill S.2546 was introduced in the Senate (by Senators Murkowski (R) from Alaska, Jones (D) from Alabama, & Cassidy (R) from Louisiana).

No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.

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Previously on No End In Sight — I Said To My Body…

No End In Sight

No End In Sight is a place for people living with chronic illness to talk about health in their own voices. We’re looking for personal stories about your experience with chronic illness. No advice, no listicles.

Cakelin Marquardt

Written by

I write for machines and humans. Developer, biochemist, disabled, Buddhist, queer. Into policy, poetry, data rights, cognition research & tech diversity.

No End In Sight

No End In Sight is a place for people living with chronic illness to talk about health in their own voices. We’re looking for personal stories about your experience with chronic illness. No advice, no listicles.

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