Living with MS

CCC staff hears often from people faced with overwhelming medical expenses.  Below, Julie shares her story of living with MS and the high cost of health insurance premiums and prescription drugs.   The CCC supports efforts to lower prescription drug costs and health insurance premium expenses, including HB19-1168, which aims to lower the cost of health plans purchased on Colorado’s individual insurance market, like Julie’s plan.

Julie’s story

I woke up one morning and, while I was in the shower washing my hair, I noticed that my left hand was not making the same movements as my right hand. Over a period of days I lost the ability to type, button shirts, put earrings on, play my guitar – in essence I lost the ability to do anything that required fine motor skills with my left hand. To add to my frustration, I was exhausted from the moment I got up in the morning until I returned from work. I went from being a very healthy and competent woman to someone who could barely dress herself and make it to work on time. I was a high school art teacher at the time of my diagnosis; consequently, losing my fine motor skills also threatened my ability to keep my job.

I was diagnosed with MS within a month of my first attack and started on a disease modifying therapy right away. It’s difficult to explain the fear and worry that an MS diagnosis brings with it. You’re never sure what part of your body will be hit next and what abilities you might lose. In addition to the many day-to-day frustrations of living with MS, the physical pain that accompanies it is overwhelming. For example, one of the symptoms of my MS was extreme neuropathic pain in my left hand that was like holding on to an electric fence and not letting go. To this day, it is the worst pain I have ever dealt with (childbirth included).

That said, the pain, fear and confusion that come with MS, are eclipsed by worry when you realize how much the disease modifying therapy drugs cost. (The original drug I was on was $60,000.00 per year. The drug I am currently on is about $144,000.00 per year.) I was, very literally, stuck between a rock and a hard place-my neurological MS pain and the thought of having to pay for a disease modifying therapy to treat it.

I was fortunate that I had good health insurance through my employer when I was diagnosed with MS. I met my maximum out-of-pocket deductible just getting my diagnosis. I can’t imagine how hard it would have been to face life without good health insurance. This insurance allowed me to go to the best doctors and gave me the mental freedom to choose the medications that would most benefit me. (I should also add that I went to several doctors before I found the neurologist I am currently seeing. My experience helped me understand that not every neurologist is adept at diagnosing and adequately treating MS and its accompanying symptoms.)

I have since retired from my job and I am currently paying for private health insurance purchased through Connect for Health Colorado. The cost of my insurance is 1/5 of my current monthly income. Even though the cost of this insurance is oppressive, I couldn’t afford all of the medical expenses associated with MS without it. An estimate the out-of–pocket cost per year associated with managing my MS is about $149,200.00

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