To check the price of the newly FDA approved fingolimod I googled "buy fingolimod" and got several
website pages on companies that sell fingolimod for non-human research. These companies (
LC Labs and
Selleck) are encouraging researchers to use their product in research so they can sell the company more
fingolimod. At one company (
Selleck) it costs $150.00 for 200mg. The Novartis Gilenia website says that the
pills would be 0.05mg each day. That's about 15mg a month. Simple math shows that we could all get
fingolimod for about $20 a month if we were allowed to buy it that way.  Based on their projected price of
$4,000 a month, that’s a 200 times markup!
As much as I hate needles, I suggest we all boycott Gilenia until they lower their price to at least $1,000 a
month. That's still exorbitant but they do have the research and clinical trials to pay for - an estimated $25
million for clinical trials from what I've heard.

It is also my opinion that the $4,000 a month was figured by adding a thousand to the average $3,000 a
month of the other MS therapies. They figure that no needles are worth $1,000 a month. I say we show them
and not buy it. Currently I use Copaxone and I have a $777.10 a month co-pay (25% of their “negotiated”
cost). I did use Betaseron and got drug-induced Lupus and had to change therapies. At least Betaseron
uses the overies of Guniea pigs (in China) and that requires manufacturing costs (and yuk!). I can see the
large manufacturing cost for Betaseron but it looks like all of the other therapies base their price on
Betaseron’s high price. I was infuriated with Copaxone's price (soon to go generic) and really hoped that the
new oral medication would be cheaper. When I found out the price I nearly stroked out. A cure that took
maybe 12 months of treatment would be worth that, maybe, but the drug companies are really taking
advantage of the fact that there is no cure and they’ve got us over a barrel.
Yes, I'm posting everywhere but y'all do the same and spread the word. Let's show Novaris, maker of
Gilenia, that people with MS are not a bunch of gullible idiots!


WHAT IS IT?

Fingolimod is not a new drug. It is a fungal metabolite that has been used in Chinese herbal medicine.(13)  
For decades researchers have been looking for a drug that suppresses the immune response in
transplantations without a lot of side effects. Along comes FTY720 or fingolimod and researchers from
different companies are busting their butts to find different applications for it. The article I read, published in
2002 does list Novartis Pharma  as a research partner
(13) so I'm sure the company does have a lot of money
invested in the research of FTY720 or fingolimod. But that research showed that FTY720 or fingolimod is
useful for a lot of applications. So MS therapy is not the only way that Novaris can make money off of their
research. There's still a lot of applications in the transplantation anti-rejection and autoimmune arena where
Novaris can recoup their investment.

FOLLOW THE MONEY

So lets do some speculative math. From what I heard from a sales representative of another therapy, the set
of three Clinical Trials to get a drug approved by the FDA take $25 million, more or less. I'm sure it varies
wildly depending on the complexity of the trials. According to
emed there are about 250,000 to 350,000
people with MS in the US with 200 more being diagnosed each week. Let's cut that number in half though
because a lot of people with MS don't use any MS therapy. So if there are 175,000 people wanting to use
Gilenia (fingolimod) at $1,000 a month (don't we wish!) Novaris would net ($1,000 - $50 for mfg. costs) $950 X
175,000 = $166,250,000 a month! After a few months all of their costs would be paid back. If they proceed on
their current, greedy path, they would have an income of $3,950 X 175,000 = $691,250,000 a month. Of
course, the number of people with MS able to afford $4,000 a month would probably be half of the 175,000.
So let's figure 87,500 X $3,950 = $345,625,000. That is only about twice the amount that the lowered $1,000
price would bring the company. That is still a lot of profit but I would think that Novaris would not want the
bad publicity resulting from their outrageous $4,000 price.

I read lots of sales rep training information on how to push tMS therapies to doctors. They tell the doctors
that the patients' insurance company will cover most of the costs. According to the blogs, our co-pay ranges
from $30 to $300. They are lying to the doctors. A lot of insurance policies require a 25% co-pay on certain,
high-priced drugs. Mine does. My co-pay is $777.10 a month. To cope with the budget-busting cost, I have
been injecting only half the prescribed medication every day and hoping I don't have a relapse. Another
sales ploy is the old there-is-financial-help-if-someone-can't-afford-their-medication. Doctors don't realize
that the funds often run dry before the year is up and that there are income caps on the funds. So doctors
are thinking that everything is fine for their insured patients. Well, it is not fine. For their patients that don't
have insurance, they believe that they are also getting those funds to pay for the necessary medications.
Obviously, the more the drugs cost, the less donated funds there will be to share between the uninsured and
financially strapped.

We are the only ones who can bring about this change. MS is a disease that has no social
stigma. If we complain that we are being exploited, the general public will respond positively
to our efforts.
 So Boycott Gilenia! If necessary, we'll picket at their corporate office. Get your
scooters charged!




Information that is provided in this site is not intended as a substitute for the medical advice of physicians.
BOYCOTT
GILENIA
(fingolimod)
Why? Because I think a 200 times
markup is taking advantage of those
of us with MS.