At What Cost Can We Continue to Treat MS?
Shocking, isn’t it? If you have recently seen the cost of the disease modifying therapy (DMTs) drugs you join me in that state of shock. I was only diagnosed with RRMS in 2008 and don’t have a lengthy history of taking these drugs as many of you reading this might have, but I find the pattern of pricing for my few years of treatment discouraging.
I am fortunate to have fairly good insurance; I qualify for one of the patient copay assistance programs; and I try to use my insurance resources wisely. I also know treating Multiple Sclerosis is a very expensive disease – we are all million dollar babies if not more. There have been previous discussions of the cost of these DMTs, but it’s a topic worth revisiting.
This caught my attention again recently when I read Are Specialty Drug Prices Destroying Insurers and Hurting Consumers? by Stephen Barlas, in Pharmacy and Therapeutics. He makes many good points in this discussion and I encourage you to take the time to read it, but the one that jumped out at me and continues to play over and over in my mind is the fact that cancer, arthritis, multiple sclerosis, and hepatitis C specialty drugs were only 1% of the drugs prescribed in the US in 2013, but their cost was 27% of the money spent on pharmacy drugs. The cost of these specialty drugs continue to climb – you can even say they soar - and there are projections that in just a few years, they will use about 50% of all prescription money paid out.
Don’t get me wrong – I feel no sympathy for the big insurance companies having to pay these big bills because they continue to rake in profits that run into the billions. The parent company of my insurer, Anthem Blue Cross made $2.8 BILLION1 and Kaiser Permanente, another giant health insurer, made $2.7 billion2 in profits in 2013. Both of these companies had increases in profits from the previous year, while increasing the costs of premiums to their customers.
So why should it be any surprise that the pharmaceutical companies are charging big dollars for their treatments. It seems everyone but the person with MS is making some type of money off our disease. But if you think treating MS is costly, Mr. Barlas writes that there were 12 new cancer drugs approved by the FDA in 2012 and 11 of those now cost over $100,000 per year. At least for now the MS drugs have remained below that level.
What I have noticed, though, is an unexplainable steep increase in the cost of my drugs over the few short years I have been on them . I’m not talking about a small increase, so I went looking for some numbers to support this observation. The topic has been written about over the years by many bloggers, including MultipleSclerosis' writer Lisa Emrich. In 2007 the costs were all about the same for treatment. We had fewer drugs then and the annuals costs according to Julie Stachowiak, PhD., writing for about.com3 were:
Dr. Stachiowiak notes in this same article that many of these drugs almost doubled in annual cost4 two years later in 2009-
In 2011, Gilenya,the first oral drug for MS, was introduced and it appears all the other pharmaceutical firms did their best to keep their prices in line and there was another big increase. Anthem Blue Cross Blue shield of New York discussed The rising costs of prescription drugs to treat MS in Upstate New York and how they would impact insurers. The annual charges for MS drugs around 2011 across the country were approximately:
The most recent numbers I find for the present day drugs are from 2013, which is also when we saw a number of new DMTs brought to the market - I read these numbers and want to weep or scream.
In just six years the cost of our original MS DMT, Betaseron, went from $10,000 to $69,000+ per year. The other DMTs made the same proportionate and staggering increase. There are other new therapies on the horizon and when they come on the market it’s not hard to imagine we will again see another increase and another and another. When I was newly diagnosed I realized how much money I was giving to my drug companies, and I purchased small amounts of their stock. I slowly added a few more shares of each of these, figuring if they are going to make a profit off of me, I will at least take some of that profit back. Now that I have seen these increases I only wish I had invested more and I would be sitting retired on some lovely beach from all the profits.
It’s no wonder that many people with higher deductibles, doughnut holes or no insurance at all, see no way to afford to treat their MS. Compliance to our treatment becomes harder when it is more costly. And we know by not treating MS, there is a great chance of disability that will cost even more in the long run. But for the immediate time, many people with MS have already been priced out of treatment despite all the pharma run patient programs.
So where do we draw the line or rather at what price will the insurance companies say ‘enough’ and refuse us treatment with these drugs? The coming of generic versions of some of these may help a bit but will it be a significant savings amount? We will all continue to be those expensive patients but instead of million-dollars we will be multi-million dollar babies. The Rocky Mountain MS Center estimated a lifetime cost of treating MS to be $2.2 million, but that was back when the DMTs were 'just' $20-30,000 per year.
I have heard no satisfying answers as to why these costs have taken off and I would welcome a discussion with any representatives from a pharmaceutical company who might be read this and want to say there’s more to the story. For now, I go back to my opening thought – 1% of all drugs prescribed in the US in 2013 accounted for 27% of the pharmacy costs paid out and that number is projected to increase to 50% in just a few years. None of us asked for this disease and none of us have the bottomless resources for carrying these costs to continue. Where will the costs for treating MS stop?
Wishing you well,
Have you ever experienced any of the following financial struggles due to your MS?