Thursday, July 21, 2011

Drugs for MS Cost Too Damn Much!

Readers of this blog already know this little fact.  We've discussed the price and cost of drugs prescribed for MS on many occasions.  (See posts linked below.)

Yesterday afternoon, news outlets were announcing the result of a 10-year study on the cost-benefit of MS treatments published online in Neurology.  In reading the news coverage (because the study itself is available only to subscribers to the journal), it appears that cost-effectiveness or Quality-Adjusted Life-Years (QALY) was not the only measure taken.  It was determined that earlier treatment was more cost-beneficial over time.

The study did suggest that lowering the price of MS drugs (Avonex was used as an example) by 67% would bring their QALY cost to an amount more in-line with what is acceptable in the United Kingdom where NICE helps to control price and access to medication treatments.  One commenter on an article shares that these drugs cost 1/4 the US prices in Israel where there are only 4000 MS patients.

You can read coverage in Reuters, Bloomberg, New York Times, Los Angeles Times, Washington Post, U.S. News & World Report, FiercePharma, Science Daily, Corante, Pharmalot, WebMD and the National MS Society who helped to sponsor the study.

[Note that there must have been an embargo on this news release until around 4:30PM yesterday.  I must not be on the right press release mailing lists, certainly not the same ones as the "big" news outlets.]

Here are several posts where we've already discussed the price of MS drugs:

Gilenya Priced at $4000/month, 30-50% Higher than MS Self-injections (October 2010)
At that time, the four main MS disease-modifying treatments ranged in cash price from $34,667-$39,928.  Gilenya was introduced in September with a price of $48,000.

The Rising Price of MS Disease-Modifying Medications (March 2011)
Between October and March, the other MS-related drug companies raised their prices.  The four main self-injectable drugs ranged in price from $34,980-$45,140 with Gilenya (the only oral pill, taken daily) at $48,000.

When I was first prescribed Copaxone in December 2005, it was priced at $18,000.  Now it is $45,048/year, a price which is 2.5 times higher in cost in less than six years.

Now when trying to determine what exactly are the prices of these drugs, it becomes a game.  I had previously used the same website/online pharmacy to determine the price of these medications.  But no longer provides information on Copaxone or Rebif.  So I have to turn to a different source,, which could alter my price comparisons over time.

For instance, today prices Avonex at $3029/box where prices Avonex at $3307/box.  Gilenya compares at $3880/month and $4268/month, respectively.  Betaseron at $2990/box and $6661/month (which I believe is actually enough medication for two months).  Destinationrx lists Copaxone at $3754/month and Rebif at $3338/month.  The variations continue....

Using destinationrx numbers, the range of prices for MS disease-modifying drugs today (not including Tysabri) is $39,966-$51,216.  Just imagine if the prices were lowered by 67%!!  $13,189-$16,901 would actually seem rather reasonable.  I'm sure that the insurance companies would prefer that.  But maybe not, because why else wouldn't they be better at negotiating lower costs for their "customers" when it comes to drug prices.

Money Spent on MS Drugs Continues to Rise, But Do You Know How Much? (April 2011)
"The total amount spent on MS medications increased 25.4% from 2009-2010.  The amount had increased 34.4% from 2008-2009 and 18.3% from 2007-2008.  The result is an amount spent in 2010 on MS medications which is double what what spent in 2007.  Double in three years.  If forecasts are correct, the amount spent on MS drugs will more than double again in three years. "

One of the news articles I have read regarding the Neurology study, the author referenced an accompanying editorial which stated that "...costs may naturally go down with the advent of more oral DMTs (as opposed to the injectables that are primarily in use now) and as drug company patents expire and generics are introduced. "  My opinion is that this editorial author is confused with what SHOULD happen in a normal market for medications.  The market for MS medications is anything but "normal."

The MS Relapse is Not So Inexpensive (June 2008)
After receiving the EOBs following a 5-day IVSM treatment and a trip through the MRI machine, I learned that one relapse resulted in $6000 of adjusted medical costs.  This did not include time off work or any other financial effects of a single relapse.  Just the medical costs which were originally billed at $10,500.  Absolutely crazy.

The Value of Money or the Value of Health - What do you see? (January 2008)
From December 2005 to January 2008 (two years later), Copaxone's price had increased from $18,000 to $21,000.  A bargain by today's pricing standard for MS drugs.

Here is the abstract of the Neurology article/study:

Cost-effectiveness of disease-modifying therapy for multiple sclerosis
A population-based study
K. Noyes, A. Bajorska, A. Chappel, et al.

Objective: To evaluate the cost-effectiveness of disease-modifying therapies (DMTs) in the United States compared to basic supportive therapy without DMT for patients with relapsing multiple sclerosis (MS).

Methods: Using data from a longitudinal MS survey, we generated 10-year disease progression paths for an MS cohort. We used first-order annual Markov models to estimate transitional probabilities. Costs associated with losses of employment were obtained from the Bureau of Labor Statistics. Medical costs were estimated using the Centers for Medicare and Medicaid Services reimbursement rates and other sources. Outcomes were measured as gains in quality-adjusted life-years (QALY) and relapse-free years. Monte Carlo simulations, resampling methods, and sensitivity analyses were conducted to evaluate model uncertainty.

Results: Using DMT for 10 years resulted in modest health gains for all DMTs compared to treatment without DMT (0.082 QALY or <1 quality-adjusted month gain for glatiramer acetate, and 0.126–0.192 QALY gain for interferons). The cost-effectiveness of all DMTs far exceeded $800,000/QALY. Reducing the cost of DMTs had by far the greatest impact on the cost-effectiveness of these treatments (e.g., cost reduction by 67% would improve the probability of Avonex being cost-effective at $164,000/QALY to 50%). Compared to treating patients with all levels of disease, starting DMT earlier was associated with a lower (more favorable) incremental cost-effectiveness ratio compared to initiating treatment at any disease state.

Conclusion: Use of DMT in MS results in health gains that come at a very high cost.

(To access the full study, the price is $20/day for nonsubscribers.)


  1. Yes beyond outrageous and these are just the newbies. While I cannot put my fingers on it at the moment a 20 year study of Betaseron (obviously as the first the only one possible of this length) was even more damning.

    Maybe 21+ years of MS spouse caregiving has left me cynical but lowering costs by 2/3, reasonable, Big Pharma, and insurance companies all in the same entry? - You found some medical marijuana didn't you?

    Seriously it's well argued and well, wouldn't it be nice.

    Caregivingly Yours, Patrick

  2. What is disgusting is that other countries can negotiate with our very own pharmecutical corporations whilst we as consumers can not. Spread the pain around I say. The US citizen/patient is bearing the brunt of the so called investment dollars that these medications are supposedly producing...NOT. Who are these corporations kidding...not me by a long shot. They pay the lobbyist in Washington to block any sensible laws that would prohibit these very problems of inequity. At one point people were fleeing to Mexico and Canada to buy the very same drugs at 50-70% cheaper then within the US boarders...a law was passed banning this. It had nothing to do with the safety of medications as these are the exact same meds we buy in the US by the same producers. it is a money game and one that is costing US citizens their very lives. Sad.

  3. My opinion is that this editorial author is confused with what SHOULD happen in a normal market for medications. The market for MS medications is anything but "normal."

    IMO you hit the nail on the head. An ever growing population of MSers who may never see a cure, who are at their wit's end and suffering and in pain and feeling so lost and alone with no hope in site. We turn to the DMDs to buy some time and stave off progression.

    I realize, for instance, that Novartis had to spend a LOT of money to conduct the largest ever clinical trial for an MS medicine, (Gilenya), but at the price they are charging out of the gate, they will likely recoup their expenses within the first few years depending on how many new prescriptions are written.

    It's just sad that we are a captive audience whose very quality of life rests in the hands of those who are ultimately most concerned with the bottom line.

    The flip side of that, of course, would be to ask "if not for the vast amount of profit to be made on the backs of the MS community, what would be the driving force to come out with new and better treatments?" Surely we would like to think altruism would be the driving force and price would be governed by compassion, but we all know that's not how the world works.

  4. @Patrick, you made me laugh!! Medical marijuana, not likely legal in my lifetime here in Virginia. :)

    The price increases year-over-year and quarter-over-quarter drives me crazy when I look at it. Recently, I have been digging into an old (expired) supply of Provigil (part samples, part from a one-time prescription paid for by the county), so I thought that it would be good to know the cost if I need to ask for a new script at my next appointment.

    In 2006, the cost per pill was $9. Now the cost is $24. A 167% increase which is even more than the Copaxone increase over the past 5.5 years.

    With prescription coverage limited to $1500 each year, I can't even afford to purchase two months worth of this med. Drives me crazy if I think about it too much.

  5. @Deb, the fact that there really doesn't seem to be negotiations of any sort (while I'm sure that there must be on some level) drives me crazy. It really does.

    I originally started this blog to talk about health policy and the outrageous system of insurance and lack of safety nets in this country.

    When I started Rituxan, one of the greatest benefits was that it was covered under major medical instead of prescription coverage. One round of RTX has cost my insurance company about $22,500 (a lower, negotiated price than what the hospitals have charged).

    I am hoping that this past infusion will last for 9 months like the previous one did. That'll bring the overall cost down.

  6. @Jeri,
    I know that Novartis must have spent enormous amounts of money. But like you point out, at this rate they are going to recoup those costs in short time. Ironically I've read pharma-investment coverage which indicates that the Gilenya roll-out has been considered not so good. Their income increased tremendously in the 2nd quarter compared to the 1st quarter this year. Looked good to me.

    When I think of what studies are ongoing for MS meds, Biogen is the company which comes to mind first. They've got five different compounds in trials. That's a lot of research to be funding on the backs of Avonex and Tysabri. Not that exorbitant prices are excused, but at least something is being done with the income.

    Also, in an unguarded moment, I witnessed the head neurologist/researcher at Biogen actually say that initially they "didn't realize what a goldmine they had in BG12" before results from their phase 2 trial came in. It was much more successful than they expected (apparently). She caught her words and just about choked on them as she was presenting to a small room full of MS patients (not a room of investors or executives). LOL.

  7. This is just plan ol' sad to me.

  8. Oh my gosh, Lisa. That unguarded moment nearly made me literally sick to my stomach to read.

    I know a lot of people will think me pessimistic to say this but I truly feel that's why there will never be a cure. Where's the profit in that? And the gold rush that the DMDs have been will be over and all the investors will lose.

    Cancer is where you will see expensive cures or at least drugs to prolong life. You can't continue to make profits year after year if your customers are dying.

    We MSers might have terrible QoL as life goes on, but rarely is life expectancy shortened by much.

  9. Interesting to think, as Tickled Pink implies, MSers are more profitable than others because our life expectancy is not hugely shortened. The longer those with RRMS live the more money can be made out of us for drugs to keep us from suffering relapses.
    Thank goodness I live in the UK. I'm waiting to see whether I get Gilenya long term or not.
    Maybe MS Truth: What price well-being?

  10. Thanks Lisa, for keeping us up on the ugly of pharma-funding. When my MD asked me to join Combi-Rx study, (copaxone plus avonex), he felt it made sense to treat with 2 agents with different therapeutic goals. Hoping that the combo will be better than each one alone. I believe he was right. Big Pharma did not want this study. They are pushing the envelope and playing with us, the victims of disease. Calling effects of DMTs, a "health gain" is a stupid way to see this.Preventing exacerbations and maintaining function save in costs of hospitalization, complications, equipment, personal care....oh wait, most commercial insurance wants you gone when you need long term care. They are not vested in your staying healthy for the long run. Most people change health insurance every 3 years. When a nurse at Kaiser, we would cringe at certain diagnoses, knowing our budget would be blown. The high costs point to how valuable they are. We need a cure but in the meantime, DMTs remain the drugs of choice. MS patients have a small voice and studies like this are scary. Do not look at cost to benefit ratio, do as Lisa does and look at the Cost!

  11. Hi Lisa,
    Shame so much money and expectations are spent using DMT.
    Since I have had mediwiet/cannabi I do not need to use valium which is good.
    ps from the pharma industry dnt's are great thet mean crustomers for life which for the companry is a better investment.

  12. @Nicole, thanks.

    @Jeri, I hear what you are saying and it's a sentiment which I've read many times over online. You are not alone.

  13. @Toots,
    It is undeniable that MSers are a profitable market. It's shocking how much is made from these few medications.

    I hope for you that you are able to get back on Gilenya. Did it work for you during the trial?

    I hate what things cost, but I like it when something works.

  14. @Mary,
    When I was first dx (in 2005), I remember my neuro talking about the premise that using two drugs would be more effective. He did mention that there was some question as to whether if one drug closed the BBB (like it was supposed to do) and the other drug needed to pass thru the BBB, if the 2nd drug wouldn't get to do it's job. What ever happened to that research, huh? Did it never happen? I hadn't thought about that specific theory in a while now.

    I get that Kaiser is glad that I'm not one of their patients. (as if Kaiser would know, lol). It's hard to place value on something which DOESN'T happen such as those hospitalizations, equipment, home care, etc that hopefully these medications are preventing.

    Since I didn't get to read the full study (too cheap of me to not pay the $20), I'm not sure exactly how the researchers measured and quantified things. I presume that they attempted to calculate the value of not missing work and not having extra healthcare costs. I need to see what all is considered in calculating the QALY.

    I can imagine that at the beginning of this 10-year study, the premise was that the DMTs saved bunches and bunches on overall costs to the healthcare system and to society (ie keep folks working). Doesn't seem that the result have supported that...ooops!

    But it would be horrible if such a study as this were used in a political way to withdraw availability of treatments to patients because it wasn't deemed "worth it."

    We can't put a value on those other benefits which result from fewer relapses and delayed progression beyond 10 years. But we can say that these dollar amounts being transferred from one budget to another are ridiculous.

  15. Hi Herrad,
    It's so good to see you! Glad that the mediwiet/cannabi works so well for you. That's truly a blessing. The idea of 'customers for life' is truly depressing, but true.

  16. Outrageous and it could be that we have to have many of these drugs. Kinda held hostage....

  17. Well, I feel since I failed Betaseron (flu complex/goiter) AND Copaxone (chemical burn) and saved Medicaid a fortune - I should be allowed to reimburse my medical mj caregiver for my stash. He gives it to me free because he knows I can't afford to pay for it.

    My neuro told me to use it. Why can't it be one of the choices? (other than the fact the Feds don't like it?)