Jenn’s Story

By Jenn Powell

Living with a progressive and incurable disease is a lesson in accepting the unacceptable. With change being the only certainty, I have learned to appreciate the beautiful fragility of life.

It has been 11 years and three disease-modifying therapies since my diagnosis of relapsing-remitting multiple sclerosis. Progression came rapidly. Despite early intervention with glatiramer acetate, I moved onto Tysabri (natalizumab) within 15 months. Infusions proved difficult on my hard-to-find veins, making it necessary to implant a port-a-cath. Within 12 months, I developed dysphagia and dysarthria. An MRI showed new, active lesions in my cervical spine. The final decision to discontinue treatment came with a positive JC virus test.

Management of my disease seemed futile. And with the last line of treatment staring me in the face, desperation set in. It was physical and psychological warfare.

I started B-cell depletion in a series of back-to-back infusions. My body responded with a bevy of unsavory side effects. Alopecia, flushing, tachycardia, diarrhea, and nausea were mainstays. The status quo was unsustainable. At my doctor’s request, I sought information on clinical trials.

It took me four hours to learn the meaning of exclusion criteria. It took me another four days to comprehend its impact on my ability to partake in a clinical trial. I combed through the myriad clinical trials enrolling for multiple sclerosis. Taking an immunosuppressant medication at any point during my life rendered me ineligible. For weeks I returned hoping the inclusion criteria would change. It didn’t. And I no longer return.

I understand the difficulty in qualifying for a clinical trial. The inclusion and exclusion criteria exist to maximize the potential effects of the trial medication. Yet there is a fundamental issue when inclusivity becomes impossible by way of treatment for the disease itself. What percentage of the MS population is affected by this quagmire?