Growing up, I was an excellent student. I studied diligently, invested time in homework, and came to class prepared. A+ report cards were not the aspiration, they were the norm. Which is all to say, I am conditioned to pass tests and excel scholastically. Unfortunately, the worlds of academia and medical testing are not clones. I can’t simply study extra hard to pass a neurological examination. There is no “passing” - there is just evaluating.
As an MS patient, I am the test subject, not the test taker. And while I initially had difficulty with this kind of passive framing, I eventually found the perspective to be quite liberating. The pressure that I so readily place upon myself in the neurologist’s office is dissipated. All I need to do is show up as I am, to present my authentic self in all my strides and limitations. In so doing, my medical team can gather the objective information needed in order to formulate the best plan of action.
Embracing the status of “Test Subject” not only softened my anxiety around annual check-ins, it also opened my mind to scientific advancement contributions through clinical trials. In my own unique way, participating in medical research allows me to give back to the MS community, and to rewrite my personal disease narrative.
Multiple Sclerosis is complex. And despite having been studied for over a century and a half, science still lacks a definitive cause. In that 150 years of analysis, decades were spent developing a bedrock of understanding before moving into phases of translational and clinical research. This means that FDA-approved treatments did not appear until the early 1990’s. Luckily, the strong scientific foundation, partnered with advancements across the entire medical field, has allowed for accelerated treatment plans and protocols for those living with MS.
I am proud to do my part to progress scientific understanding, if even just a small role. While not part of an official trial, medical experimentation was woven into my early dance with MS treatment. When I was diagnosed in 2014, there were limited options for disease modifying treatment (DMT). Based on various medical test markers, my best bet was oral medication. However, after failing both oral options on the market, my neurologist was determined to get me onto something stronger.
The Rheumatoid Arthritis drug Rituximab was being administered to some MS patients with extreme cases of disease aggression. The catch? This application was not approved by the FDA for MS, and therefore not an attractive solution to insurance companies. After months of waiting and multiple insurance denials, my team finally got the go-ahead to administer Rituxan (the drug’s generic name) as my DMT. Even better? It worked. We were finally able to control my relapses and pursue quality of life recovery. A couple of years later, the FDA approved Rituxin’s sister drug Ocrelizumab (Ocrevus, colloquially) for MS treatment. I switched to Ocrevus and continued to adequately manage my disease progression.
A few years later, I had the opportunity to participate in a clinical research study for a new remyelination drug. MS damages the myelin sheath that surrounds the nerve cells, resulting in lesions and neurological short circuiting. The hope was that this drug would regenerate myelin sheathing and repair past relapse-related damage. The controlled study was in the middle phases of the clinical trial process. Its purpose was to gather data on the drug’s efficacy and to identify and monitor potential side effects. I had great hopes for this drug: perhaps this would be the key to restoring my worn brain and body! Alas. The drug did not meet the metrics to continue on to the final required clinical trial phases. Despite initial disappointment, I was eventually able to transform those dashed hopes into seeds of gratitude. In this realm, more information is good. Even negative outcomes are part of positive research. Once you know what doesn’t work, wasted initiatives are ruled out, allowing for greater focus on what can work.
I am now participating in another research initiative, this time a marketing-based study. I have switched from Ocrevus to Briumvi (the FDA-approved Ublituximab). The bonus? It’s all on the pharmaceutical’s dime. Since the drug works in a similar fashion to Ocrevus and has already been approved by the FDA, this study is low risk with the benefit of free drug and financially compensated doctor’s visits and testing. In a universal healthcare system, that may not hold much appeal… but as a disabled individual in the United States of America? I’ll take all the help I can get - especially if I can contribute to the body of knowledge in the process.
When stripping it down to the most basic form, we can’t have a perfect solution for MS without a greater understanding of the disease’s cause. Dedicated, diverse research leads to evolving treatments and improved solutions. I may not be able to ace my annual medical exams just yet, but I’m content knowing that I can help neurological researchers advance their metrics of success. It takes all kinds to pursue a brighter future. Together, it is possible.
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