MS Awareness Week: The Cost of MS

Our culture measures things in what they cost. How much, how little, sales, bargains, luxuries, vanity purchases, so many of these transactions feed our egos and our self concepts.

The costs of MS are both calculable and intangible.

Raw numbers are relatively easy to come by. There are approximately two and a half million people in the world who have MS. In the United States, I am only one of about 300,000. Here are some of the costs to me.

The first things I think of are the medical costs. I have 11 prescriptions, five of which I take every day (8 pills) and five that I take as needed for symptoms such as muscle spasms and pain. Three of the medicines that I need to take every day cost more than $400 each per month. The others are in the neighborhood of $10 to $100 each. If I didn’t have insurance, I would be looking at a total cost of about $1800 every month for medicine I need to function. My co-pays run around $150 instead.

The Tysabri I go for once a month costs approximately $2000. It is another $1500 for the infusion center. I pay a $20 co-pay for the center, nothing for the drug.

Bi-annual MRI’s come in at around $2000 each. I pay nothing.

I have to see three different doctors every three months, on a rotating basis. Another $20 a pop, insurance picking up the rest.

So go ahead and complain about managed care.

I am one of the extraordinarily lucky ones still able to work. What is even better, I work from home. But I was out of work for ten months before I started this job in July. In the two years preceding, I was ‘laid off’ from two different executive level positions within days of ‘coming out’ with MS. Illegal you think? Yeah, try to prove it. Two lawyers got me great packages (tacit admissions of guilt). But court battles would have cost me more emotionally and financially than I was willing to spend.

In four years I have only missed ten days of work due to MS, five consecutive days each time, each time because I was in the hospital. I know how fortunate I am to have that record.

But let’s consider the cost of other kinds of time. Time to order the prescriptions, time to pick them up, a half a day out of work each month for the Tysabri (that I make up during the rest of the week, working longer hours the other days or sometimes on Saturday), at least one doctor visit a month. About eight hours a month there. One business day.

There is also the time I can’t cook, I can’t do laundry, I can’t clean my house. Doing anything physical takes longer. Others have to do it or I have to spend twice as long when I am well enough. There is time I would love to be going to the movies, playing with my grandson, knitting. But I have to rest instead because I am too weak and in too much pain to do anything else.

In the meantime, there is the cost of discouragement. If I can’t clean, I can’t have people over, which is one of my favorite things in the world to do. I lie in bed, or sit on the couch looking at what I want to do, dusting, vacuuming, baking, trivial stuff, I know, but I desperately I miss who I used to be. Another cost.

There is the cost of independence. No more walks in the city. No more shoveling snow (I liked shoveling snow!). No more painting a room on a whim. No more getting on a step stool to wash the curtains when they need it.

The self-conscious clumsiness of using a cane or a wheelchair. Looking at a curb, wondering if you will be able to get your leg up high enough to negotiate it. Sitting all through a church service.

For other people with MS, there is the very real permanent cost of a job, voluntarily or involuntarily, either by being subtly discriminated against or by being forced to go on disability because of your health. Estimates are that it can cost up to $100000 annually per person with MS in lost wages, lost productivity and cost of medical care.

There are almost no resources available for the jobless MS person who could train for another position and continue to contribute their talents to our society. Some people do manage it, reinventing themselves, finding new, less physically strenuous careers. But that takes a perfect storm of support, finances and wherewithal. For many of us, one missing piece means you simply cannot get to another place. Considering the brilliant people I know with MS, that is the biggest, most tragic loss of all. Loss of viable, gifted, marvelous participants in our lives.

There are of course also the permanent losses through death of wonderful, anonymous people known only to the ones who loved and miss them. And the more public losses of stunning talents like Jacqueline du Pré and Richard Pryor.

MS can cost people their spouses, their friends, their sense of who they are. One friend with MS tells me, “If I could tell the world what having MS is like, it is the progressive loss of small bits of oneself continually, until there is nothing left to lose. Losing friends, relationships, jobs, wealth, confidence, wellness, independence, optimism, thinking, walking, strength, balance, and sight.”

It is the ultimate thief.