Tuesday, September 01, 2009

What price hope? Multiple Sclerosis medications

Can anyone really put a price on hope? Pharmaceuticals sure seem to have a knack at it, enough to create a $6 billion Multiple Sclerosis medications market.

‘Our story’ dates back to the dawn of the original Betaseron trials. Betaseron rejected Patti as too progressed; she had a minor foot drop. Following FDA approval Patti’s prescription plan rejected her for Betaseron … yes you guessed it, because Betaseron, itself, had previously rejected her.

In another couple years Patti was in a wheelchair. What if … ?

Well, ONLY Betaseron has enough history to be studied.

The American Academy of Neurology has heard an earful. In 2005, preliminary data from a 16 yr study showed that about 50 percent of those in the original Betaseron group reported the ability to walk without assistance compared to 41 percent of those from the placebo group.

This Spring, Bayer (makers of Betaseron) claimed “early initiation and sustained exposure to Betaseron were strongly associated with a reduced risk of a negative outcome (EDSS score ≥ 6.0, wheelchair use or conversion to SPMS) after 16 years”.

OK, now I am no rocket scientist but the difference between Betaseron and placebo was basically a 9% better chance of walking without assistance, or in Bayer-speak a “reduced risk of a negative outcome”.

What then is the price of a 9% better chance?

Back in the beginning with NO competition Betaseron ‘out of pocket’ was around $1,000 / month = $12,000 year. Today there are six Multiple Sclerosis medications. Curious how much competition has driven down that original price?

AVONEX $2,242/mo = $26,904/yr
BETASERON $2,113/mo = $25,356/yr
COPAXONE $2,376/mo = $28,512/yr
NOVANTRONE $1,389/mo = $16,674/yr
REBIF $2,327/mo =$27,924/yr
TYSABRI $ 2,612/mo = $31,344/yr

Something is just not right with this picture.

Insurance co-pays and/or medical assistance may help some to afford a better chance; however pharmaceuticals are still getting their money one way or another from a US health care system that is collapsing around us all.

Merchants of hope? … or pirates of hope?

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

P.S. Patti tried Avonex at the turn of the Millennium. Avonex then cost $1,250/mo. We paid $500/yr co-pay. Balance of $14,500/yr absorbed by her long term disability company health insurance plan. No positive results, discontinued after two years.


  1. I would say pirates. It seems as if they're profiting off of whatever hope those who need their medications have. (Hugs)Indigo

  2. Patrick - Skip took Copaxone for a number of years with the presumption that she had SPMS not PPMS (no strong evidence either way). Fortunately, she had drug coverage where it only cost us a $15/quarter copay and the rest was paid for by BCBS (showed about $5k/quarter on the invoice as their cost). She finally discontinued its use a month or so ago as her progression has not slowed (in fact, its speed has increased) during her use of Copaxone. I'm not saying the disease progression has sped up because of Copaxone, just that it hasn't demonstrated efficacy as far as we can see.

  3. I wish there was the same level of transparency for treatment efficacy as there is for treatment safety. When a treatment has side effects, the company must provide information on who is affected how often and under what circumstances. When the treatment has no effect for certain classes of people, they just say "better luck next time."

  4. its a shame it usually comes down to the mighty dollar and making a huge profit at the expense of others; sad that Patti couldn't have at least been able to try Betaseron when her symptoms "too progressed". It might have prevented her from becoming increasingly progressed and given her more years of functionality outside of a wheelchair and saved your back a bit....

    I don't know what the answer is with healthcare and reform and drugs like this, etc., but I know the present system sure isn't working


  5. The price of "HOPE" just like the Visa ad says is priceless. don't ever give up hope that things will change.

  6. In calculating the cost of reducing the risk of a negative outcome by 9%, I'd add the hassle and time required for daily/every other day/3 times a week/weekly injections, or monthly/every three month infusions. I didn't start any disease-modifying drugs until 14 years after my first MS symptoms. I eventually tried Betaseron, Novantrone, and Tysabri, none of which seemed to make much difference for me, one way or the other. Maybe if I had tried them earlier, they would have been more effective. May be so. Or maybe I just saved myself 14 years of hassle and expense. For a 9% difference in outcome, I can't say I regret my decision.


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