By Adrianne Gunter
During My senior year in college, I had big plans: I was going to take my BFA in Writing for Film and Television, go to grad school, and pursue an MFA in Film. After receiving my master’s degree, I was going to package myself as a writer-director, work in the local film scene, and pursue a career as a visual storyteller. And then I was diagnosed with multiple sclerosis on July 8, 2015, at the age of 30.
Going to school at the University of the Arts in Philadelphia was the best four years of my life—I loved every minute of it. So imagine my surprise when symptoms of what would eventually be multiple sclerosis struck my senior year.
Suddenly, I was turning in my homework late, missing class, and tired all the time–without explanation. I thought it was stress; nevertheless, after graduation, I thought the stress was over and I could focus on getting my career together. When I lost vision in my left eye, I knew it was time to see a doctor.
The neuro-ophthalmologist I went to diagnosed it as optic neuritis, which heals over time, but she encouraged me to get an MRI because she said that optic neuritis is one of the first signs of multiple sclerosis. My life came to a crashing halt. Instantly, it all made sense: the fatigue, the brain fog, and the muscle weakness. And my symptoms were only getting worse.
Multiple sclerosis, or MS, is an auto-immune disease that attacks the central nervous system. Scars, known as lesions, form in the brain and the spinal column. These lesions interfere with the way the body can receive information from the brain and this makes everything difficult.
I walk with a cane, but it’s hard to lift my legs. My hands don’t grip the way they used to, and I need help with tasks that used to be as simple as removing the lid from a jar of peanut butter. No matter how well I chew my food, I have difficulty swallowing.
I have full-body tremors that can strike without warning. I have all of these problems and more, but the most important thing to remember is that there is no cure for multiple sclerosis.
Over the course of two years, I applied for Medicaid four times, but was denied every time.
It’s only when Pennsylvania Gov. Tom Wolf of Pennsylvania signed the Affordable Care Act’s Medicaid expansion that I was able to finally obtain insurance.
I know that others share my struggle, because before the ACA, there was an uninsured rate gap of 9.9 percentage points between white and Black adults. Now, the difference has dropped to under 4 percentage points in Pennsylvania. That means that other Black Americans can get access to the care that will help save their lives.
There is no cure for multiple sclerosis, but there is treatment. Treatment doesn’t repair the existing damage, but it can prevent new lesions from forming.
By the time I was able to get insurance, the lesions in my brain had migrated from my mid-brain to my hindbrain, and now I have two lesions in my spinal column in an area that, if left untreated, can cause total and permanent paralysis. My first treatment was covered through the ACA’s Medicaid expansion.
Without coverage, the medication would have cost thousands of dollars, but the co-pay was no more than $3. I’m on a new treatment and it, too, costs thousands of dollars, but with Medicaid, the co-pay costs me nothing.
Medicaid also covers my doctors’ appointments. Medicaid covers the MRIs that track the progression of this disease. Medicaid also gives me hope that if I have a terrible reaction to medication, or a fall where I break my bones, or anything I can’t predict, it will be covered and I won’t be buried in endless medical bills. I already feel like a burden, I don’t want to become an invalid.
Thanks to the Affordable Care Act, 20 million Americans have been able to afford health insurance. Many of those same people would have been turned away because of pre-existing conditions, such as asthma or pregnancy or depression, but now 135 million Americans receive protection for pre-existing conditions under the law.
I didn’t ask for this disease. I don’t want it. If I could reach inside myself and rip this disease out of me, I would, but I can’t. There is no cure for multiple sclerosis. I’m 35 years old. This is the rest of my life.
Adrianne Gunter writes from Philadelphia.