My name is Julie and I’m from Providence, Rhode Island. I was diagnosed with multiple sclerosis in 2007 and, more recently, Crohn’s disease in 2019. I’m currently self-employed and am not sure if I can return to a corporate job full time because my symptoms can be so severe. It feels very lonely at times because I don’t know anyone else with this particular combination of diseases.
I’ve been on nearly every MS drug on the market. Since 2018, I’ve received an Ocrevus infusion every eight months and now mostly have the condition under control. But I still have tremors and flares, which have affected my dominant hand and completely changed my handwriting.
With Crohn’s disease, it took months before my doctors and I were able to figure out my medication regimen, since having MS ruled out some of the drugs I could take. I started using Entyvio last October and receive it as an IV infusion every eight weeks.
While I’m lucky that these drugs have been working well for me, it’s extremely stressful to pay for two incredibly expensive treatments. It’s hard to even look at my medical bills. It already takes so much out of me to live with the physical symptoms of MS and Crohn’s, but in addition I am forced to fight with my insurance company and figure out how to pay for these drugs that I need. The stress I feel also contributes to a vicious cycle: Stress can make Crohn’s disease flare up, but having MS also makes me more susceptible to anxiety and other mental health issues.
I feel guilty putting money toward anything other than my medical bills for my primary physical conditions, so my other health issues are often put on the backburner. That means my doctors have recommended psychotherapy for my anxiety and physical therapy for back pain, but I choose not to pursue treatment because I don’t want to think about how much these services will add to my bills.
At what point are drug companies choosing to harm people in favor of making a profit? These companies shouldn’t be allowed to get away with putting just any price tag on drugs that people like me will likely need for the rest of our lives.