Disease Modifying Therapies: Uncertainty Risk and Hope
Let me tell you about Disease Modifying Therapies and the layering of uncertainty and hope. Progressive illnesses and new to market drugs without long-term data. The possible benefits outweighing the possible risks. Let me tell you about the unpredictability of Multiple Sclerosis, a “snowflake” disease, and the ways that treatments themselves are unpredictable. Attacks and remissions. Lesions smouldering on my brain and spine that may or may not translate into symptoms. Palimpsestic progression, treatment, progression, treatment.
When I was diagnosed with Multiple Sclerosis they sent me home with piles of pamphlets. Glossy stock with drug company logos. Content vetted by pharmaceutical boards charged with making sure the information present is unbiased and does not make promises. Asked to decide between the three options available at the time. Injections and IVs. As a 21-year-old hoping this diagnosis was a mistake I put it off. Now some neurologists consider it best practice to get patients on a treatment the day they are diagnosed. Instead, I waited. Obstinate and in denial until the numbness crept up from my toes and left me with no sensation in my body. Replaced touch with the feeling of constriction. An invisible corset laced too tight. My fingers, precariously stacked pebbles, unable to type, to knit, to do up buttons, to hold a pen and scrawl my fear across the pages of my journal. Fatigue so profound I couldn’t walk across my apartment without needing a rest. It took months to recover. The frayed wires of my nervous system still mean reduced sensation in my hands and forearms 14 years later. Numb toes still terrify me. It was enough to make me commit to a drug. Without a job with drug coverage, I navigated applying for the provincial drug program. I enrolled with the company’s patient support program and a nurse came to my house to teach me how to do daily injections.
It felt impossible, and then it became routine. Refrigerating pre-filled syringes, rotating injection sites, clipping used needles with the tool provided and dropping them into an empty plastic pop bottle. I was never given a sharps container. For ten years I injected myself daily and I hoped that it was making a difference. That I was a patient that would experience reducing relapse, reducing new lesions, reducing disease progression. No promises. And then there were new lesions. MRI images mapping new holes in my myelin and the need to try something new. While my MS was progressing, the pharmaceutical options progressed too. New pills on the market. An anti-moulding agent that was somehow discovered to treat relapsing and remitting MS. Pills instead of needles. New convenience with new risk I had to swallow.
Progressive multifocal leukoencephalopathy. A brain infection that can kill you. A brain infection caused by the JC Virus, a virus 85% of the population has without concern. I have this virus. These disease modifying therapies suppress my immune system and bring with them the risk of unearthing hidden viruses lurking in the depths of my body. Progressive multifocal leukoencephalopathy. It causes clumsiness, difficulty walking, loss of vision, trouble speaking, weak muscles, facial drooping and personality changes. Almost all of which are also symptoms of MS. How do I know if what I am experiencing is unpredictable disease progression or a fatal brain infection? Progressive multifocal leukoencephalopathy, they tell me has to be listed on all immunosuppressive disease modifying therapies because it happened to some people during clinical trials. They tell me the risk is low. The benefits outweigh the risks.
Despite my fear I swallow the bright blue pills every day. I like the way the tiny white medicine beads rattle inside. Like swallowing a musical instrument or a rattlesnake’s tail. Rhythmically and ominously shaking into my belly. And it becomes routine. The occasional side effect of flushing is unpleasant but manageable. My skin spontaneously blooming bright red and itchy across my torso. My crimson face prompting a co-worker to ask once, “What’s wrong with you!?” I was warned coffee and fruit juice seemed to trigger it. Not every day, it was always an unexpected reaction, but sometimes the coffee was brewed just right to ignite me. The juice was made from fruit touched by just enough sunshine to leave me rosy. Turmeric seemed to trigger it too. Something in the anti-inflammatory roots set me on fire. Every day, twice a day for three years I swallowed this dangerous and hopeful medication until my annual MRI showed progression. New lesions appearing. It wasn’t working.
Again, the treatment options developed alongside my MS progression. The available options are categorized as “first line” and “second line.” I had exhausted my first line options and in April of 2020 with a global pandemic raging I was being graduated to the second line. I asked for some time. I hoped that the new lesions wouldn’t cause new symptoms. I was hyper aware of the sensations in my toes and was overwhelmed with the fear that my inaction would cause long-term damage. The pills I was taking were identified as immunomodulators but now I would now be put on immunosuppressants. A choice between intravenous meds, cytotoxic pills or a new injectable all approved in the last 5 years. Being JC Virus positive and having been on previous meds with previous risk no matter what I chose next, my risk of Progressive Multifocal Leukoencephalopathy would increase. No matter what I chose next I would be losing my (overactive) immune system during a pandemic.
I spent a year researching. I spent a year worrying. I spent a year getting as many vaccines as I could to protect me from covid19 and shingles and the flu. I tested my blood to ensure my previous vaccinations were still protecting me. I made the best choice I could with the options available and the lack of long-term data on new-to-market drugs. I am part of creating that long-term data. I am eradicating my lymphocytes with little white cytotoxic pills. Only 18 pills taken over the course of two years that are supposed to reduce my T and B cells to nothing until they re-emerge having hopefully learned not to attack and destroy my myelin. It’s possible I won’t need a new Disease Modifying Therapy for years. It’s possible that in a few years I will have to graduate to an intravenous treatment. I’m grateful there are options. I am grateful that my work insurance covers the substantial price tag. I am grateful that research and development continues.
I am not a gambler. I am wholly risk averse. I asked my doctor if there was an antidote to this poison. What if I take the pills and my immune system never comes back? There is no antidote. I wish I was someone who just marvelled at the pharmaceutical advancements since my diagnosis. I wish I felt overwhelmed with hope. I wish I could opt out of these choices. Having my body is unpredictable. Having a body is unpredictable. Having my body is risky. Having a body is inherently risky. Vulnerability to danger and disease all wrapped up in our flesh and bone and we don’t know the limit to how many diseases and dangers we can endure until they kill us. But we keep existing.
About the Author
Rebecca Wood lives with her plants and craft supplies in Toronto, Canada, and has been navigating an overactive immune system since the age of 19. She has graduate degrees in Early Childhood Studies and Women and Gender Studies and currently works in the Disability sector. Her writing explores themes of bodies, identity, magic, and grief.