MS costs a lot. If you’re an MS caregiver, you know this to be true. If you’re a casual reader, continue and learn about the predicament that faces Multiple Sclerosis patients and their families.
Health care is expensive. Health care is especially expensive in the United States. I don’t know all the reasons why this is true, but it seems to be related to profit, shareholders, insurance, law suits, regulations, etc. In other words, the system is so complex that I doubt anyone has the real answer to this question: Why do Multiple Sclerosis disease modifying drugs cost so much more in the US than in other countries?
I surely don’t know. I cannot imagine why MS medications cost 67% less in Britain, Canada and Germany. Same manufacturer. Same medication. Same disease. Very different cost.
In fact, Multiple Sclerosis is unusual among progressive diseases in that the medications are the most costly expense category. In the US, the cost of a patient’s MS medications can quickly reach $30,000 per year. But of course, that’s not the only cost associated with Multiple Sclerosis.
MS typically causes some form of disability. MS is a progressive neurological disease in which myelin is removed from neurons. This kills the neurons.
Because of disability, we must consider the cost of lost productivity at work or even the complete loss of one’s ability to work and secure an income. This impact is felt by family members. If an MS patient spouse spends $30,000 on medication and earns $30,000 at work, the family breaks even. In this simple example, we will assume the other spouse, the MS Caregiver wage earner, can support the family financially.
However, many MS patients are unable to work. In those cases, the family does not break even – not even close.
Between loss of employment ($30,000 in our example) and the cost of medication ($30,000 in the US), our sample family pays $60,000 for Multiple Sclerosis. That loss of $60,000 is unavailable to the family. It is an annual hole that must be filled.
Then there are other expenses directly related to medical care. First is inpatient hospital care. Fortunately, this is not a frequent event for most MS patients. Inpatient hospitalization seems to be required about once every five or six years. Average this out and this cost is probably close to $1000 per year. Second, in-home, non-medical care is an expense that many MS patients incur as their MS progresses. These costs vary based upon need and typically range from $6,000 to $12,000 per year.
Crunch all these numbers together and the annual cost of Multiple Sclerosis can easily top $65,000. Many families have insurance which covers some of these costs. But in our current economic environment, I imagine a number of families with an MS patient do not.
We’ve not even touched on impact being an MS caregiver can have on the caregiver’s career. I’ll save that one for a later date.
A most important side of the story – well said!
Caregivingly Yours, Patrick
Thanks for the Excellent post. It really gives you something to think about. I live in a country where our family has about a $200 ceiling on medication costs. We have socialized medicine which seems to be a bad word in the US nowadays.
There are so many issues for a family that has someone with MS. Having to deal with the costs would have made me give up long time ago I think.
Great post on the staggering costs of MS. Our organization, Good Days from Chronic Disease Fund, is dedicated to helping chronic disease sufferers with their medical care. Please help these sufferers too, and support our organization! http://www.gooddaysfromcdf.org/
The loss of wages because of work is devastating on families. My husband works 1/2 as much as he used to and we have more bills coming in than we did before. Before he was diagnosed we were breaking even on bills. Now we are swimming in them.
The worse my husband gets the less meds there are to fall back on. Right now he has used all that are available one the market now the Dr. wants to try Chemo drugs. Man o man will this ever get any better. He is still walking with a walker for the most part, but because he is a man he tries to push the envelope and walk without using it. Really is frustrating for me as his wife and care taker. And the constant wanting for me to say I am never going to leave you. Even though I have said it a thousand times in the past 15 years he some how doesn’t seem to think I will stay. I remind him the our wedding vows said for better or worse. He has had the better making good money, seeing our children grow up get married and have 1 grandchild now it is time for the worse. still doesn’t click that I am in it for the long hall. frustrating…..
I haven’t seen many posts on this site that are recent. I’ve been a caregiver since 2000..my husbands condition has been in freefall in the last six months and I am struggling to cope. I just buy a new set of mobility aids for them to last a couple of weeks. Three different sets of walkers two wheelchairs and now he is pretty well bed ridden with me having to catheterise him at the bedside. I have damage to my cervical spine from lifting him.I have 20,000 worth of bathroom renovations that I can’t find money for and will they happen to late? I have spent all of my superannuation on changes to the house already with a lot more to go. So the cost for me has been huge.
Kim, I am 36 and newly diagnosed (July), stories like yours are the exact reason that I have decided to form a foundation called Keep Smyelin Foundation for Hope. While still in infancy, my foundation will look to help people like you who have staggering costs that go beyond the traditional “medical” costs that are handled by insurance. I understand personally that MS is a disease that burdens families in so many ways and I hope to help people with these struggles. Please feel free to contact me directly so that I may offer assistance once this foundation is off the ground. I am seeking grants now and actively pursuing all options. I have 2 t-shirt fundraisers going right now and while you may not be able to contribute on your own, please share this with others as any little bit helps make a difference. I wish you all of the best. http://www.keepsmyelin.org