All my life, I’ve loved spending time outdoors. For me, staying home and lounging on the couch was never an option. I craved an active, adventure-filled lifestyle. In the summer, you could find me on the tennis court, and in the winter, you could find me on the ski slopes. In every season in between, I was bound to be running around, enjoying the rush of fresh air in my lungs and the feeling of sun on my skin.
I think that’s why my multiple sclerosis diagnosis hit me so hard. While the early symptoms like vision problems, fatigue, pain, numbness, and spasms were certainly uncomfortable and disconcerting, I grappled most with coming to terms with the fact that multiple sclerosis is progressive and has no cure. After my diagnosis, I knew that this disease would slowly rob me of my ability to move freely. The thought of losing my active lifestyle was excruciating, and I struggled mentally and emotionally for a long time.
Despite the odds, I fought to maintain my way of life for several years. Eventually, however, my symptoms began to escalate. In 2012, I started using a wheelchair, and these days, I require full time care in order to go about my day. While this disease may have taken my physical independence, I’ve resolved to never let it crush me. I refuse to lose my fighting spirit!
Since my diagnosis, the multiple sclerosis treatment landscape has changed significantly. While medications and therapies were once limited, there are now a variety of care and treatment options. Thankfully, I’ve been able to work with my doctors to find options that help lessen my symptoms and allow me to continue to live life to the fullest.
I know that the progress in multiple sclerosis care is a direct result of pharmaceutical innovation. Without significant investments in research and development, these new treatment options would not be possible. I am so grateful to the researchers and scientists who have devoted their careers to finding treatment options for patients like me.
As someone who relies on her medication to carry on day to day and who is eagerly and hopefully awaiting a cure, pharmaceutical innovation is a deeply personal matter to me. That’s why Congress’s attempts to limit pharmaceutical research and development through Medicare negotiation feel like a direct attack, because it could have dire impacts on real Americans.
The data paints a clear picture: Medicare negotiation could severely limit pharmaceutical innovation. The Congressional Budget Office estimated that 60 fewer cures will be available to patients in the next few decades as a result of this legislation. Similarly, a study from the University of Chicago estimated that Medicare negotiation could kill as many as 14 million Americans in the next 10 years.
Politicians are aware of these alarming statistics. They know that Medicare negotiation will have very real, deadly impacts on patients with multiple sclerosis and other rare and chronic diseases. Despite this, their agenda presses on. While I agree that infrastructure is important, it should not take priority over the health and well-being of the more than 133 million Americans with incurable, ongoing, chronic diseases.
We need to let pharmaceutical companies continue to invest in new cures and treatments, and I worry this just won’t be possible if Medicare negotiation goes into effect. I urge our North Carolina legislators to have some compassion and respect for patients like me. Vote to protect innovation. Vote no on Medicare negotiation.
Rose Sanders, now retired and living in Raleigh, taught at public schools in New Mexico and Virginia.
