Out of Control: MS Drug Costs

People using any of the Multiple Sclerosis Disease Modifying Treatments (DMTs) have been talking about this for some time. I wrote about it in my article At What Cost Can We Continue to Treat MS in September 2014.

This should come as no surprise, but in case you don’t already know, the costs of MS Drugs are escalating out of control and show no signs of slowing, let alone stopping or dropping. This is currently a big headline getting a lot of attention thanks to a study that was presented at the 2015 American Academy of Neurology  convention.

The study comes from a group of academic researchers at Oregon State University, and they came to the same obvious conclusion I reached when comparing insurance EOBs and other tidbits and receipts for services.

Not only have the costs of the disease modifying treatments continued to increase since they became available over 20 years ago, they have done so at a rate of over 700%, according to this latest review which only goes through 2013. Their report, The cost of multiple sclerosis drugs in the US and the pharmaceutical industry: Too big to fail?, takes a critical look at this increase but is also introspective about the responsibility of the medical profession to speak up for change.

“The driving force behind this study was our experience that the high cost of MS drugs interferes with our ability to take good care of our patients. We decided to shine a light on this growing problem so that those of us who care for patients with chronic illness can work together and advocate for changes to drug pricing mechanisms,” said Dr. Ruth H. Whitham, co-author of the study, a professor of neurology in the OHSU School of Medicine, and co-founder of the Multiple Sclerosis Center at OHSU, in the official news release.

The authors point out the pricing of MS drugs is contrary to what should normally happen in a market. Over time, the cost should go down. When more competition is added to the market, the costs should go down. When the development and research expenditures are paid off, the costs should go down.

Instead, the opposite has happened and these drugs have done nothing but gone up in price and there is not a single DMT that costs less than $50,000 per year. The price increase has been well in excess of normal inflation over those years, even when they are compared to similar biological drugs which are among the most expensive to manufacture.

How this out of control pricing has happened is the pressing question. Part of the problem, according to the authors, is the industry is unregulated as far as pricing, and how those prices are set is not transparent. This problem exists with other specialty diseases too, and is not exclusive just to the 12 approved multiple sclerosis DMTs. “Some in the medical community have begun to question the ethics of our current free-market drug pricing system and to acknowledge that exorbitant pricing for drugs is a major burden on our already stressed health care system” according to the release.

The Bloomberg Business Report carried a story about this report, and in How Much Would You Pay for an Old Drug? If You Have MS, a Fortune, they also condemn the pricing structure for these drugs. This story is worth a look, if only for the graphs and the money/business angle that completes the perspective of the financial gains realized by the pharmaceutical companies.

The OHSU study does not offer a suggestion on how to stop this escalation of treatment costs, but they do issue a challenge at the end of their study that their peers who treat MS should become familiar with what the drugs cost and speak up about these increases.

The authors conclude “…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”

To these researchers I say ‘thank you’ for acknowledging and urging others to act on what people living with multiple sclerosis have been saying for years – people are drowning in the costs of their MS treatment and we need relief from the escalating costs. Dare we hope they have started a conversation in the medical profession that will gain momentum and bring about change?

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • life well lived
    4 years ago

    I wrote some on the systematic logic which has lead to some of our high pharmaceutical prices back in March. In our healthcare market, everyone acts in what they perceive to be their best interests, and the result is not a drop in prices:
    http://thelifewelllived.net/2015/03/10/710/

    Just after writing that post, I was able to ask whether congress has a plan for these massive pharmaceutical cost increases to MD senator Ben Cardin at a town hall held at my work. After I traced through the logic of the cycle of my MS medication costs, I told him similar cycles are happening for many other conditions including cancer and HEP C. His response was to say congress has no appetite to delve into healthcare at this point beyond repealing the ACA. Our healthcare delivery system is in for a serious sticker shock.
    http://thelifewelllived.net/2015/04/01/massive-pharmaceutical-cost-increase-seems-imminent/

    As recently as yesterday, I was speaking with some patient advocates about drug costs and doctors knowing how to advise patients with regard to fantastically expensive medications. One of the questions at our round table was whether this fits in with a reasonable minimum expectation patients should be able to have of their doctors, and how do we measure a doctor’s knowledge and ability in this skill set.

  • Anne
    4 years ago

    I am concerned that neurologists are influenced by the large payments they are receiving from pharmaceutical companies. I checked out 3 MS Center neuros I was considering (http://www.cms.gov/OpenPayments/index.html), and I found that in 2014 they had received $40,000, 160,000 and 200,000 in general payments from MS drug companies (not including research payments). Could be conflict of interest?

  • cw
    4 years ago

    I agree with you Janice. I’ve had 5 neuro’s and some have labeled me a ‘non-compliant’ patient because I wasn’t on a DMD at the time. That label has followed me to every neuro. My income is SSDI and a thousand bucks a month doesn’t go far. So was I ‘non-compliant’ for a few months -YES. I’d rather eat and have a roof over my head. The doc’s just didn’t get it that I really couldn’t afford the co-pay. I know they have co-pay assistance now but I’ve progressed to SPMS. None of the DMD’s cover SPMS, so why should I use them. I have tried Copaxone (twice), Avonex, Betaseron, Rebif, Tecfidera and Aubagio. I at the point of ditching them. I’ve had new lesions while on them so what’s the difference. Good for you JB – go enjoy what life you have left!

  • cw
    4 years ago

    We have been complaining about this for years. DMD started out at about $2,500 to $5,000/year. Two years ago Rebif (Merck) was $63,648/year; Copaxone (Teva) $72,000; Avonex (Biogen)$60,696; Betaseron (Bayer) $69,708; Tysabri (Biogen) $56,629; Gelenya (Novartis) $57,480; Tecfidera (Biogen) $63,840; Aubagio $57,086; Extavia $67,080. The average price per year for an MS drug is $63,129. There is almost 400,000 people in the US. Most are ‘encouraged’ to take an MS DMD. You do the math. $63,129 times 400,000 equals $25,251,600,000/ year. In the world there is about 2.3 million. That total, if they were to pay U.S. prices would equal $145,196,700,000. There is no justification in the world to charge such outrages prices. Some of these medications have been out for more than 20 years. MS drugs are not the only ones that are outrageously priced. One chemo can run $35,000. Last year I paid about $6 for a differnt generic drug. This year it was $83 for the same generic drug. The drug was invented in 1955 and is still widely used. Same thing with another drug invented 40+ years ago.
    Why should companies look for cures when they take in billions in profits every year. Our co-pays and premiums constantly go up. I have kept past payrolls slips and premiums have gone up 400% from what I used to pay. And none of these DMD treat secondary progressive MS. A good percentage of MS patients lapse into SPMS after about 20 years. What exactly are we paying for. Pharmaceutical Companies and Insurance Companies are running the medical show now. There is no conceivable reason (other than greed) that one medicine should cost much money.

  • Janice
    4 years ago

    I have MS and diagnosed 14 years ago although I now think it was there before that time. When I was diagnosed my neurologist told me I didn’t need to do any drug therapy because the side affects would be worse than what I would experience with my MS. I didn’t know much about MS then but I was glad not to do shots everyday. Over the years when I would find a neurologist that would see me, I was asked why I wasn’t started on drug therapy when I was diagnosed? I was then told to start on what they were promoting and come back in six months. I knew at that time I couldn’t afford any expense in that treatment but when I didn’t do it, I was told to let them know if I ever had any trouble. Basically you won’t do it so don’t waste any more of our time. I tried 3 different neurologists and they all pushed a different drug and wanted me to take it and when I didn’t I was basically put on the don’t come back list.

    I have been fortunate that my MS hasn’t had any physical effects but depression, fatigue, and cognition has been increasing over the years. Treating the symptoms to me is more cost effective than spending money on therapy that would make my life worse financially and physically.

    I am disappointed that neurologists don’t have time to take care of a patient and I think they probably get “rewarded” for using a certain drug. I would rather use my own doctor and have him get information from the neurologist and help me decide what to do. Of course, if you go to the neuro first the doctor can’t tell you to do anything different from what the neuro told you-it is my decision.

    I don’t feel like there is any way to really do anything about MS. It can’t be cured and the drug therapy is only supposed to slow down the disease but it doesn’t stop it.

    Everyone wants a magic pill to help them lose weight instead of accepting that they need to change their lifestyle. It is the same with MS. Their is no magic pill but changing lifestyle can make it easier. I know my limitations now, do the most I can every day and accept when I have to slow down. It is easier to laugh at the things that happen-like not being able to find my car, remember peoples names, move slower, and more. My taste has changed so things I used to like aren’t good anymore so I learn to eat what I can enjoy and ignore all the programs on TV that show meals being prepared and how to make them because it can make me feel sick.

    I know that everyone with MS experiences it differently so I know that many will not agree with anything I say but it is the way I have learned to accept that I have it.

  • JB
    4 years ago

    CW, great summary comment. Thank you. And Laura, thanks for highlighting this situation. Unbridled capitalism is hurting many for the benefit of a few.
    With these unconscionable prices, and the paucity of evidence of effect with secondary progressive disease, I quit my disease modifying drug in April, 2012. Now we are going on some pleasure travels instead of buying these drugs. I’m taking my walking stick, incontinence pads, and caffiene…..

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