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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:

Rebif……………. $15,000.00

Copaxone…….. $10,000.00

Avonex………… $10,000.00

Betaseron…….. $10,000.00

Tysabri…………. $28,400.00

Dr. Stachiowiak notes in this same article that many of these drugs almost doubled in annual cost4 two years later in 2009-

Rebif……………. $25,068.00

Copaxone…….. $23,208.00

Avonex………… $23,736.00

Betaseron…….. $22,272.00

Tysabri…………. $31.332.00

 

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:

Rebif……………. $36,825.00

Copaxone…….. $42,300.00

Avonex………… $37,544.00

Betaseron…….. $42,000.00

Tysabri…………. $42,788.00

Gilenya………… $48,000.00

 

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.

Rebif……………. $63.648.00

Copaxone…….. $72,000.00

Avonex………… $60,696.00

Betaseron…….. $69,708.00

Tysabri…………. $56,629.00

Gilenya………… $57,480.00

Extavia…………. $67,080.00

Tecfidera………. $63,840.00

Aubagio……….. $57,086.00

 

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,

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.

  1.  Miranda N. Californians brace for Anthem Blue Cross Rate Hikes. ABC News. February 1, 2013. Available at: http://abc7news.com/archive/8977686/
  2.  Rauber C. Kaiser Permanente posts $2.7 billion in 2013 profits. San Francisco Business Times. February 14, 2014. Available at: http://www.bizjournals.com/sanfrancisco/blog/2014/02/kaiser-posts-27-billion-in-2013.html?page=all
  3.  Stachowiak J. Multiple sclerosis drug prices...Whoa About.com. http://ms.about.com/b/2009/07/21/multiple-sclerosis-drug-prices-whoa.htm
  4.  Stachowiak J. Multiple Sclerosis Drug Prices. Whoa... About.com. http://ms.about.com/b/2009/07/21/multiple-sclerosis-drug-prices-whoa.htm

Comments

  • Graz
    5 years ago

    I apologize if my points have been brought up already, my eyes are tired from reading the article itself.

    My gut response is that I think the prices are a game corporate figureheads with golden parachutes play. It’s a business, they’re playing it the way all big business is played now.

    Three issues:

    First, compare the price charged in the United States versus other countries.

    Second, I think the rising cost has to do with the copay assistance programs. Obviously, someone is paying when a drug company can offer a $0 copay assistance program. Some of it is probably shenanigans in accounting, the rest is probably cost-shifting by more accounting games.

    Third, while I have no problem with high prices for drugs serving a limited population when the company actually develops the drug, but one of the recent oral drugs was a previously approved drug for another condition, and thus “only” required a Phase III trial. That’s tantamount to “bait and switch” tactics, and it’s of big concern considering how their prices are aligned with the other orals that I assume got started for MS from scratch… and yes, I do use that drug.

    Guess those are my 3 cents’ worth, a penny apiece.
    Graz

  • Mgroz
    5 years ago

    I was diagnosed in 2005 and within 3 years had gone through Copaxone, Betaseron & ended up on Tysabri for 2 years. My symptoms were changing & secondary progressive ms seemed to be moving in. My doctor talked about Novantrone but I decided to go off all MS meds. That was 4 years ago & I have been stable ever since. I fall fairly often due to drop foot but now wear a brace that has reduced the falls.
    After reading your article on rising costs of meds, I worry that as I get older my condition may progress where I may need meds again but will have no great insurance to cover the cost. What are we going to do?

  • Laura Kolaczkowski author
    5 years ago

    This is something I think of quite often – I am only a few years away from retirement and facing a change from private insurance to government care. I hope we both continue to get the help we want, Laura

  • Mich1961
    5 years ago

    Big Pharma is not interested in curing diseases. Too much money in treating them, versus curing them….

  • Laura Kolaczkowski author
    5 years ago

    I would love to debate that point, but I find few arguments to support the pro-pharma position other than my trust thatthey are trying to do the right thing for us and not just looking at their bottom line. -Laura

  • itasara
    5 years ago

    Laura, I am sooo happy you wrote this article. I noticed early on how the cost of copaxone was rising. When I first started taking Copaxone 20mg, the receipt from insurance said the cost was $1800.That was in 2009. Now in 2014 it is almost $5000. Maybe more, but now I don’t get a receipt from the drug co. how much insurance really pays each month. I never heard of “specialty” drugs or specialty pharmacies until sometime last year. Before that I ordered Copaxone online, no problem. Then things changed and I had to speak with a pharmacy representative to order each month, and it was the first time I heard the words “you have a specialty drug,” even though I had been on it for almost 8 years! I also see that where I could go online and email Shared Solutions, there was no longer any email address available. That really gets my ire.

    I can’t begin to tell you what I went thru to try get the new Copaxone 40.. First of all my husband became semi-retired in April this year and we had to go on medicare. That alone was a shock and a lot more money out of pocket.Then the Copaxone 40 came out and free dinners from the drug company were abundant and emails promoting Copaxone 40 and snailmail ads trying to convince MS patients to get it, but guess what? It did not matter that I wanted it or that my neurologist told me I could go on it, my insurance company wouldn’t approve it for me and most others. I spent a lot of time writing congress reps, the attoney general’s office of NY, the MS society, the Shared Solutions distributor (I’m still not sure what they do,) the drug company–TEVA, my neurologist (who had other patients refused besides me,) my ins. company that gave me denial reasons that were definitely NOT true and invented by the ins., and finally TWITTER-which I am sure made an impact. Bad enough it was stressful to do all this, but I became angry and that added to my stress. Then last month, I and others were finally approved. I am not sure what made the difference, but my theory is that approval finally came when BCBS figured the generic form Copaxone 20mmg was not going to be coming out very soon, and perhaps they were getting a lot of bad press for withholding a drug that could cause less integument damage and more complaince for some. And the Drug company was going to losing a lot of income over the possibility of a generic Copaxone 20 and perhaps with competition coming from oral medications, so suddently out came this new dosage form 3x/week (knowing that most of us would want it). Teva tried a couple times to sue for an extension on delaying the generic form of Copaxone. They lost. So both sides had their reasons, but the reasons revolved around money and not what would be best for patients, and, as is usual these days, the ins. company decisions trumped the neurlogist’s decision to prescribe it-they play doctor which infuriates me. The new form of Copaxone was supposed to cost a little less according to the drug representative at a dinner I attended, but the BCBS pharmacy rep I spoke with said BC made a “deal” with the distributor for about 3x more than the cost of what they were paying for the 20mg dose. I’m still not sure I believed that. Who would make such a deal? Didn’t make any sense at all. My reason for wanting a 3x/week schedule (having a degree in nursing so I wasn’t totally naive) for any MS patient was that there would conceivably be less damage done to one’s skin, and no one could really argue with me. I too thought less supplies, even less medication over a week’s time, must cost less– well that was naive-it’s all politics not rationality. And now I wonder, what if there is a new generic drug for Copaxone 20mg in the future? Won’t it still be seven injections a week? And then will the insurance company decide (assuming I am still taking it) that I must go back to the 20mg dose 7x/wk because it is cheaper for the ins. co, regardless of whether I or my doctor do not want to go go back? Do I trust anyone in the insurance company or Big Pharma at all? NO.

    I read an article online by a writer for Bloomberg that because of the competition with oral medications, the cost of Copaxone will increase, which apparently it is or will. The cost of Medicare is definitetly going up!! That is what it is about-money, profits. How much of the profits go to helping those who cannot afford it? I’m sure a lot of it. How much of what I pay goes into sending overnight refridgerated meds every month in styrofoam boxes that are not friendly to the garbage dumps or the environment? I will say that the individual insurance reps do try to please, but their hands are tied. Overall the whole system is disturbing.

    It is complicated to be sure. I feel we are the pawns in a game and low on the totem pole with little say. The doctors are becoming pawns-more like factory workers rather than healers. They are limited by the ins. companies, electronic records, regulations ad finatum-but that is another topic. How will we be able to even have this medication in due time? Will we need a one payer system or medicaid for all as the seniors are drained of their retirement and social security income?

  • SandyJ
    5 years ago

    I don’t trust anybody very much these days. Dx’d in 1999 with RRMS now progressed to Secondary Relapsing MS. Found out if you are on Medicare you are not eligible for $0 Copay program through Drug company for new oral medication Capsule which is patented through 2020. Too much money in treatment to give a hoot about finding cause or cure. Also, no information available unless you provide household income to drug company to determine if there are other programs to qualify for funding. This smells to high heaven and seems to make the whole system less than transparent. If you have nothing to lose you have better treatment that the middle class citizens who have worked their whole lives. No wonder psychological studies have determined that many CEOs are actually sociopaths. Are we all just lab rats?

  • Laura Kolaczkowski author
    5 years ago

    You make a key point – as people living with MS we should not have to spend valuable energy and time to battle for drugs that make a difference for many of us. What will happen when the next ‘new’ drugs become available and the other established drugs are priced to meet their costs? I see nothing going on to stop this escalating trend of our drug prices. Disturbing is one of the gentler terms I can think of – thank you so much for taking the time to share your experiences. -Laura

  • north-star
    5 years ago

    I’ve often wondered how much it costs to produce each dose of Copaxone, for example. “You’re paying for research,” they say. My response is: for all this research, a cure is a long way off, and those of us who use a drug are often your guinea pigs. Especially with MS drugs where we have to ignore our natural skepticism that there could possibly be no benefit to taking a particular drug at all. There’s no normal disease progression to serve as a true benchmark. When an infection is treated successfully, it goes away.

    The worst part for me is when a drug like Copaxone is reformulated as an oral medication or available in a stronger individual injection, it has got to cost less to produce, package and ship. Yet it’s “new” so patients and their insurers are back to paying full freight again. Crazy world where this is okay.

  • Dianna lyn
    5 years ago

    Laura,
    Yes, the doctors are aware of the costs, they don’t confront you, because, you are on a good insurance plan. I have had several doctors confront me about how do I expect to pay for my MS medicines. I was appalled!!unfortunately m, I don’t have my blue cross and blue shield anymore- they were charging me $1,200.00 to keep it going..and I just couldn’t do that…Since then, it’s been a struggle, lost the house and the list goes on. But hey, life’s not all bad, I am living in a state, that has cool weather for my condition, Hawaii. I eat right, I don’t argue with my clinical doctors -I take it, and maybe some day, someone out there will put an insurance cap on all these issues, for our children. I have been saying this for years.

  • alchemie
    5 years ago

    Thanks for doing this. I’ve been saying this for a very long time, and even tried out loud on multiple MS sites in their forums in the past to stop it to no avail. Those sites would delete what I said by telling me that I was lobbying to try to get others to pay attention to the fact that the drug companies were making millions of dollars by charging so damn much for their medications, when the website was actually the ones who were lobbying for the pharmaceutical companies themselves.

    They need to work on the cure not just give us meds!!! Because so far, no MS Therapy medications have worked for me. Its like just a ‘hope’ with no return. I tried 3 MS Therapy meds and gave up. Copaxone did not help at all. I was on that one for over 6 months and kept getting more symptoms. I had more relapses *on* Rebif than I did on absolutely nothing. And Tecfidera was nothing but intolerable side effects. I was absolutely miserable. No use in going through side effects and/or more relapses with yet another failure. I haven’t been on hardly any MS Therapy meds continuously since 2012, and I haven’t had a single relapse since September 2011. That’s 3 years with no relapses!

  • itasara
    5 years ago

    I’m listening, Alchemie. I have posted my biases as to the cost of medication (as I indicated above) to MS boards I belong to. So far I haven’t been taken off. I did not use the term Lobbying, which might scare some off. I have only been on Copaxone with no noticable side effects. But i’m not convinced it is the medication that keeps me from getting worse.. but on the other hand I’m afraid not to take it either.

  • chalknpens
    5 years ago

    Hi Laura,
    This is a well written, well needed column, exposing the greed exhibited casually by Big Pharma. I cannot understand:
    1. Why the FDA continues to allow these interferons to be prescribed when ten year studies show NO MEASURABLE REDUCTION in relapse rate.
    2. Why intelligent neurologists continue to prescribe meds that have been proven ineffective.
    3. That a larger organization (as in World Health Organization, American Medical Board, etc.) have not taken a stand on these meds.
    4. That patients continue to self-inject based on a half-promise of relapse reduction proven to be a falsehood.

    Thank you for sharing the numbers of dollars. Now we need someone to share the numbers of patients and their relapses, aka the study results.

  • Nathan J. Olson
    5 years ago

    Wow….just wow!! Robbery is all I can say to this. Great article!!

  • Laura Kolaczkowski author
    5 years ago

    Thanks, Nathan. Will you join me in speaking up about this problem? You can write your congressman about this out of control pricing. Or take to social media, such as twitter and facebook and help spread our dismay at being held captive. The pharma argument will be ‘call our patient assistant program and we can help’ but the problem is much bigger than just you and me. It is an MS Community problem and how insurance, whether it’s private or government, is being taken advantage of, too. I don’t believe our doctors even know this – the economics of MS is usually not in their view – they just focus on keeping us well. best, Laura

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