The High Cost of Being Sick in America

rxThis is a cautionary tale. I just happen to have first-hand experience with it; but I know this is only one example.

A couple of weeks ago a blog I follow posted an article about the high cost of disease-modifying therapies (DMT’s) for multiple sclerosis (MS). It confirmed for me that the drugs offered to (some) MS patients are priced exorbitantly and are often too expensive for MS many patients to afford and cited a New York Times editorial on the subject. (Read the comments; they are wonderful. Leftist and wingnut comments are sprinkled in; but for the most part, the outcry against Big Pharma and Big Insurance predominates.)

But, back to my story.

I was diagnosed in 1990 with Relapsing-Remitting MS (RRMS). For the first 3 years after diagnosis, there were no DMT’s available, only medications to manage any exacerbations (or “flare-ups”), of which I had a few. In the summer of 1993, the first DMT, Interferon-β-1b, or Betaseron™, was introduced. During production ramp-up, the company that produced it ran a lottery; when your number came up, you would get the drug. My number didn’t come up until early spring 1994. Then I began a years-long regimen of injections of the highest-cost drug I have ever taken.

Data point: My first months’ worth of Betaseron™ (15 doses), cost about $900. During the early years, the drug company had a plan that after 10 months, the next 2 months was free. I had health insurance through my employer, and the co-pay was very reasonable. (I think it was about $10.)

Fast forward to the “turn of the century.” In the early 2000’s, my insurance company started to use a “specialty pharmacy” to deliver my medication. Along about that time, I began to have visibility into the drug cost because the pharmacy included the cost of the drug in my “invoice.” I was astonished to discover that it was on the north side of $2,000. Per month! I was not surprised that my co-pay went from $10 to about $17, if I recall correctly. And, oh-by-the-way, the number of doses delivered went from 15 to 14.

Fast forward again to the 2010’s. The cost of the medicine slowly climbed, and was a little over $4,000 when the pharmacy stopped putting that information on the invoice. My co-pay also went up again, this time to $150. About 2 years ago I switched to an oral medication (Yay! No more injections!). My co-pay stayed the same. But, I don’t know how much the medication actually costs, because the pharmacy does not include that in the invoice.

A study of DMT’s for MS that was published in the journal “Neurology” indicates that the annual cost of the nine DMT’s on the market today is between $51,247 and $64,233! (By the way, the annual cost of Betaseron™ when it was introduced in 1993 was $11,532.)

The average annual cost of DMT’s at the time of their introduction has risen steadily.

  • The drugs introduced in the 1990’s (Betaseron™, 1993; Avonex™, 1996; Copaxone™, 1996) had an average annual cost of $9,516.
  • The drugs introduced in the 2000’s (Rebif™, 2002; Tysabri™, 2004; Etavia™, 2009) had an average annual cost of $24,646.
  • The drugs introduced in the 2010’s (Gilenya™, 2010; Aubagio™, 2012; Tecfidera™) had an average annual cost of $53,913.

The study in “Neurology” concludes:

“… the unbridled rise in the cost of MS drugs has resulted in large profit margins and the creation of an industry “too big to fail.” It is time for neurologists to begin a national conversation about unsustainable and suffocating drug costs for people with MS — otherwise we are failing our patients and society.”

I can’t help but agree. Some people with MS can’t afford their meds. I know some people for whom this is the case. Profit is good; but excessive profit is not, in my opinion. In all fairness, some drug companies offer prospective customers help with paying for their drug. This is a good thing; but is it also the recognition that the drug is priced too high?

Drug manufacturers bemoan the high cost of developing drugs and bringing them to market and say that the drugs are priced to recoup that cost. Well, at least for my first DMT – which was introduced in 1993, you may recall – they should have recouped their development costs in the intervening 23 years.

Both DMT’s (Betaseron™ and my current one) have been a godsend for me. Since beginning the therapy in 1994 I have not had an exacerbation. This speaks to the benefit of these types of drugs on my type of MS. I’m thankful that I have a health insurance plan that doesn’t cap my total drug costs. Yet.

This is just some food for thought regarding the price of MS therapies. The same price curve might apply for other drugs. Let me know.

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