What health insurance means to me
This week I’m speaking briefly at a local rally for saving healthcare. I’ll be telling my patient story, and since I’ve never thought of my story in the context of health insurance, I decided to collect my thoughts here.
Since I was 13, I’ve had autoimmune conditions that negatively affect my health. The first to appear was Myasthenia Gravis, which causes muscle weakness through my whole body and especially impacts my ability to smile and make facial expressions. I also was diagnosed with Sjogren’s Syndrome, which causes dry eyes, muscle aches, neuropathy (numbness, burning and tingling in my fingers and toes), heart palpitations, and more.
For the most part I took my medication and went about my life. I’ve been able to study abroad, be a ski bum, go to grad school, hold a job, and speak at conferences and events. But there has always been a very emotionally painful aspect to my condition, which is social awkwardness and anxiety due to facial weakness. The feeling of trying to smile in conversation, and instead looking like I’m grimacing (like a dog baring its teeth), and seeing that flash of confusion on the other person’s face. Or posing for a group photo and being singled out — ‘Smile! Try harder!’ When I wasn’t feeling strong (my symptoms vary by the hour), I’d avoid people in public for this reason.
In addition to smiling problems, I’ve also struggled with my voice. It can get weak and turn nasally after about 1 or 2 minutes of speaking. It’s hard to get the words out. This has caused a large amount of anxiety with any public speaking I’ve done, and I’ve dealt with it in the past by pre-recording some of my slides to give my voice a break.
Last winter, my colleague and I were accepted to present on our hospital design work at the global Interaction Design Conference, which was a huge honor. As the date approached, I became extremely anxious because my symptoms were flaring considerably, and I wasn’t sure I’d be able to talk for the full duration of our presentation.
I made a special appointment with my doctor, we talked about options, and decided to try IVIG, Intravenous Immunoglobulin. This is an IV infusion of pooled donor plasma that can temporarily strengthen the immune system. The stated cost at my hospital is over 30 thousand dollars for a round of treatment, which I would need to receive on a monthly basis. Luckily I have great insurance, and after covering the relatively low yearly deductible, there would be no cost to me for these treatments.
My first round of treatment was in January, and I felt the effects almost immediately. My joints felt ‘cooler,’ and my smile and voice were stronger. My level of stress about my upcoming presentation plummeted. We practiced our talk many times and I was confident we were going to nail it (which we did, and you can check out our talk here if you’re interested.)
Since that time I’ve been getting IVIG treatments regularly. I call it my go-go-juice, or my crystal pepsi, and it has made an enormous impact on how I feel. The interaction of talking with someone face-to-face and smiling, joking, laughing and not hiding my face out of embarrassment — that hasn’t happened for 25 years. I don’t hide from people in public, I don’t feel so self-conscious, and I feel more confident at work.
All of this is why the upcoming vote on the American Health Care Act is on my mind. The threat of being denied coverage for a pre-existing condition is real, and I remember those days when I had to worry about gaps in coverage because then I would be considered to have a pre-existing condition and insurance could refuse me.
If denied coverage, I couldn’t afford to continue the IVIG treatments that have made such a drastic improvement on my wellbeing. I would likely need to increase my use of prednisone, which has many long-term side effects.
I stand to lose a lot. Potentially my job, I suppose, but also my confidence and social ease. They say smiling makes you happier, and happier people are more productive, and, well, they say a lot of things, but dang it don’t take away my healthcare.
If you care about helping out people like me (and your own future self, be real) give your senators a call today and tell them to reject the current form of the AHCA (now called the Better Care Reconciliation Act (BCRA)), which would devastate people with pre-existing conditions.
