I Have MS: Access to Healthcare Is Personal for Me
Almost exactly two years ago, I was riding high. I had just graduated from the Harvard Kennedy School with a Masters of Public Administration and was in final conversations about several jobs in the Obama Administration. I was ready to start a new life chapter, entering my 30s confident that I could conquer the world.
After weeks of celebrations and the stresses of job interviews, I was feeling really run down. I had some ongoing dizziness that I attributed to my exhaustion. Then, one morning, I was eating breakfast and the right side of my tongue started getting numb. I thought it was a food allergy. I had plans that afternoon but figured I could squeeze in a trip to the doctor to just check in.
When I sat down with the nurse practitioner on duty, I described to her my current life situation: Just graduated, job interviews, recent break-up, forthcoming move, saying goodbye to my wonderful classmates. She laughed and said it sounded like I was a ball of stress and it was manifesting. But she said she would send me to get an MRI just in case. So off I went, hoping I could still meet up with my friend in a couple of hours. I hadn’t told anyone what I was doing — the MRI was a precaution.
After I got home, the nurse called me back. She told me she had just received the MRI results and while they couldn’t be sure until I saw a doctor the following week, she wanted to share the news with me now. My brain scan was consistent with someone with multiple sclerosis.
I lost my breath. What I knew about MS was primarily from watching “The West Wing” (one reason I was working in politics in the first place). In it, President Bartlet almost loses his election and eventually loses some control of his body. In the course of a couple of hours, I went from a healthy 30-year-old to someone who was wondering if instead of moving to Washington, I should move home to my parents because I would need physical care. And, for the first time, a policy issue that I had worked on was going to directly impact my life. I had a preexisting condition, was looking at racking up big medical bills, and was about to lose my insurance without a job lined up.
In the following days and weeks, I learned a lot more about MS. I talked to acquaintances who had it and lived with it. At that point, most of them used drugs that were injected and often caused rather severe side effects. Lucky for me, I was diagnosed just as several new drugs were entering the market that were in pill form. The MS drugs aren’t cures — they minimize “episodes” that cause the most damage to one’s brain and spinal cord. After seeing a neurologist, I chose Gilenya, which is a pill that keeps white blood cells from entering my brain stem and thus not attacking my brain like it’s a foreign object. I had to get a number of tests to ensure my heart and body could withstand the medication. I finally got the approval from my insurance company and took my first pill in October 2015, with a nurse observing me for the first 8 hours and taking my blood pressure every hour or so. I took a half day off from the job I had accepted in the Obama Administration.
Since then, I haven’t had another episode. I now have twice-yearly MRIs and take Gilenya every day. With the Affordable Care Act’s protection against discrimination on the basis of my pre-existing condition, I was able to leave the federal government 18 months later confident that I would be covered by the insurance plan offered by new employer. Because I have access to this medication and good medical care, my MS is not the debilitating disease it could have been for me even 10 years ago. My neurologist compared it to a chronic illness like high blood pressure.
My recent professional transition out of the Obama Administration has opened my eyes again to just how important the ACA is to my life. For the first time, I now see the cost of my Gilenya before the insurance company pays the bill. The pills are $7,477 a month. I am fortunate to have found a great job and remain among the top earners in this country but I could never afford the medication I need to remain healthy. And I may not always want to rely on employer-provided insurance. Yet, because I have a preexisting condition, and so may not be able to get insurance (depending on which version of the healthcare legislation may become law), my next professional transition would be much more difficult to navigate. The ACA has quite literally given me the freedom to live healthily and to make professional decisions based on how I can best contribute, not on where I can get insurance.
Many Americans don’t have access to my kind of health insurance. I spent the last two weeks of the 2016 election volunteering in North Carolina. I was working at a rally at which President Obama was speaking. I listened as President Obama spoke proudly of the accomplishments of the ACA. At that same rally, I was asked to assist an older woman with a walker who, after standing in the hot sun, needed medical care. As I helped her out of the line, she told me how her MS makes it very difficult to stand or be mobile for long periods of time. Her story hit me in the gut — it could be mine in the future, if not for my insurance. Eventually diseases like MS do manifest themselves. Without a rational government response to the current healthcare crisis — one that provides universal quality, affordable access to care — the cost of diseases like MS will break the dreams of people like me, the healthcare system, and ultimately our economy.
I’ve been thinking a lot about the impact of what repealing Obamacare could have on my life and on others like the woman in North Carolina. What I do know is that just as healthcare advances are turning neurological diseases like MS into something manageable, we’re considering legislation to further cut people’s access to care. Access to care isn’t just a moral issue. It’s an economic one. We must be honest about the long-term costs associated with it. Because the costs of these decisions will be mine to bear, but will also be all of ours.
