2600 Xyrem

Xyrem Price Increase - Narcolepsy Network Community Page 1 of 8
z (2 Pages)
z
z 1
z 2
z →
Xyrem Price Increase

wardbennett
Posted 19 December 2008 - 06:02 PM
Just ordered a refill this afternoon of son's Xyrem precription and was told there has been a 30% price increase.
His prescription has gone from $1167.36 to $1668.60. I am flabbergasted. What possible justification can there
be for this?
jenji
two words:
no competition.
jenji
NarcoPhotos
That is just ridculous!! I had to stop taking Xyrem because of the cost! It worked wonders for me, but I will
never get back on it if it keeps going up!! HOW FRUSTRATING!
drago
What is Xyrem usually prescribed for? Sleeping, cataplexy? That kind of thing?
I have an herbal pill that works wonders for me in helping me sleep at night when I am "too tired to sleep" or my
mind is rushing... Is Xyrem used for this? If it is, and you had to go off of it, what alternatives have you tried?
drago
Mike M
http://narcolepsynetwork.org/forums/index.php?/topic/2600-xyrem-price-increase/ 03/06/2011
QUOTE (drago @ Dec 29 2008, 06:17 PM) <{POST_SNAPBACK}>

What is Xyrem usually prescribed for? Sleeping, cataplexy? That kind of thing?
It was initially approved specifically for cataplexy. It is now the AASP's preferred treatment for narcolepsy (with
or without cataplexy), along with Provigil. It helps with both cataplexy and EDS because it causes PWNs to get
far more deep wave (stage 3/4 - now just stage 3) sleep. What is the herbal med? How does it work?
too exhausted
Posted 30 December 2008 - 08:20 AM
Xyrem could be used for Parkinsons as they get EDS with their hypocretins being attacked. Also MS, ME and
FM because of their pain and EDS. There are over 216,000 PWN diagnosed in the US and 44,300 in the UK,
China (955,000), India (783,000), Russia (106,000), Indonesia (175,000). So if xyrem was available at a
reasonable price it could make the same profits but actually supply more and help more PWN. It is too
expensive for Scotland to prescribe to and Wales there aren't any sleep clinics to be able to supply it and in the
UK hardly anyone gets it due to funding. Luckily I did get it but after applying for funding taking months and
with the help of my sleep specialist. So I am one of the lucky ones. You have to have cataplexy in the UK to meet
the guidelines for this drug as it is not licensed for 'just' narcolepsy.
Julieme
Posted 04 January 2009 - 09:33 PM
[quote name='wardbennett' date='Dec 19 2008, 05:02 PM' post='7305']

Just ordered a refill this afternoon of son's Xyrem precription and was told there has been a 30% price increase.
His prescription has gone from $1167.36 to $1668.60. I am flabbergasted. What possible justification can there
be for this?
There is no justification for this--it is absolutely ridiculous. I think more people need become outspoken
about this. Xyrem is very inexpensive to manufacture and since it is classified as an orphan drug, the
manufacturer received millions of dollars from the government to bring this medication to market. There is
absolutely no excuse (aside from pure greed) for any medication costing $1600 a month. I could see if the
company paid for the drug's R&D, but since this isn't the case, I think it's on the verge of abuse of government
funding. I suggest that people start contacting their legislators (I recently wrote to Tom Daschle) because if the
federal government subsidized Jazz Pharmaceuticals, there needs to be some kind of price control.
NarcoPhotos
QUOTE (Julieme @ Jan 4 2009, 08:33 PM) <{POST_SNAPBACK}>

I suggest that people start contacting their legislators (I recently wrote to Tom Daschle) because if the federal
government subsidized Jazz Pharmaceuticals, there needs to be some kind of price control.
Is there anyone out there that is good with words? I am rarely coherent with my writing. Maybe we could work
something up that people could copy and paste into the CONTACT US sections of their local legislators.
Ashley
I emailed one of their reps and here is the response I got:

Hi Ashley,
Thank you for contacting Jazz Pharmaceuticals and expressing your concern over the recent price increase of
Xyrem.
I would be happy to speak to you about why this took place and also to see if there is anything we can do to help.
We do have a Patient Assistance Program for Xyrem available for uninsured and underinsured patients and we
are also in the process of creating a copay assistance program that may be of some benefit to patients. We hope
to have this in place by March at the SDS Pharmacy with the Xyrem Success Program.
You can reach me at my office number or if you provide me your phone number, I can give you a call.
Kind Regards,
Cherie Johnson
Manager, Patient Affairs
Jazz Pharmaceuticals, Inc.
Office: 520-682-9541
cherie.johnson@jazzpharma.com
dogdreams
Nice letter! I like it. It's highway robbery to charge what they do for xyrem. I've never taken it and now I know I
never will because I could never afford that...That's more than my monthly take-home pay!
NarcoPhotos
Great letter!!! I will check back for the edited version and look into local legislators!
Ashley
This is the second email explaining the increase:

The reasons that our company chose to increase the price was due to several factors.
We are operating at a loss and have had 3 layoffs in 2008, the last right before Christmas.
We are continuing research development of Xyrem for patients with fibromyalgia. The U.S. studies are finalized,
but we are still working on our European studies. Our goal is to submit our new drug application to the FDA by
the end of this year. The risk management program that Xyrem is under is costly since we are only allowed to
have one central pharmacy.
At the same time, we realize that economy is dismal and affecting everyone and we are committed to assisting
patients who do have higher than average copays and hope to help offset those costs. We have not determined
what that coverage will be at this time, but we hope to have the program available to patients in March. Being
that your Xyrem is costing you well over $1,000.00, the copay assistance program would probably not provide
enough assistance for you, however, I would encourage you to apply for the patient assistance program.
My sincere apologies of how this increase has affected you.
If you are interested in obtaining an application for the patient assistance program, please let me know and I
can
have SDS Pharmacy follow up with you on next steps.
Kind Regards,
Cherie Johnson
Office: 520-682-9541
NarcoPhotos
QUOTE (Ashley @ Jan 15 2009, 04:05 PM) <{POST_SNAPBACK}>

can have SDS Pharmacy follow up with you on next steps.
The Patient Assitance Program was useless for me. It took months for me to get a response from them and
actually my response from them came only after I had contacted NORD. NORD referred me back to the Patient
Assistance Program. The response I received from them was that my insurance paid 80% of my bill and so that
disqualified me for the assistance. But they did let me know that if my insurance company only paid 75% of my
bill that they could help me. Even though, with the insurance that I am on, I had to pay for the Xyrem up front
and get reimbursed later. By the time I was reimbursed for my shipment, I had already had to purchase another
one. WHO CAN AFFORD THAT?!
They said there was nothing they could do for me.
loki
QUOTE (Julieme @ Jan 14 2009, 09:07 PM) <{POST_SNAPBACK}>

I have spend the past 16 years struggling on a daily basis to remain a productive member of society despite my
condition...and although I would qualify for disability benefits, I refuse to 'live' that way. It really doesn't seem
fair to me that hard-working people like me who are trying to remain productive and functional should be
denied medication because of the greed of a pharmaceutical company that has no competition or regulation.
I think you should think about rewording this since it may be hurtful to those of us who have tried again and
again to be productive and functional and failed again and again. Of course you should be proud that you are
able to succeed despite this difficult disorder, but when you compare yourself to those of us who cannot do what
you do there is an implication that we are in some way flawed in character and undeserving of affordable and
adequate health care. I'm sure you could send just as effective a letter without implicating disabled people? We
should all remember that the dire state of our health care system and the greed of big pharma is not the fault of
disabled people and that everyone deserves affordable and adequate treatment.
loki
Oh cry me a river! One wonders how many millions the corporate officers of Jazz/Orphan raked in last year?
I'm sure it's beyond my wildest dreams, and I have some pretty wild ones...
QUOTE (Ashley @ Jan 15 2009, 05:05 PM) <{POST_SNAPBACK}>

This is the second email explaining the increase:
The reasons that our company chose to increase the price was due to several factors.
We are operating at a loss and have had 3 layoffs in 2008, the last right before Christmas.
We are continuing research development of Xyrem for patients with fibromyalgia. The U.S. studies are finalized,
but we are still working on our European studies. Our goal is to submit our new drug application to the FDA by
the end of this year. The risk management program that Xyrem is under is costly since we are only allowed to
have one central pharmacy.
At the same time, we realize that economy is dismal and affecting everyone and we are committed to assisting
patients who do have higher than average copays and hope to help offset those costs. We have not determined
what that coverage will be at this time, but we hope to have the program available to patients in March. Being
that your Xyrem is costing you well over $1,000.00, the copay assistance program would probably not provide
enough assistance for you, however, I would encourage you to apply for the patient assistance program.
My sincere apologies of how this increase has affected you.
can
have SDS Pharmacy follow up with you on next steps.
Kind Regards,
Cherie Johnson
Office: 520-682-9541
Julieme
QUOTE (loki @ Jan 15 2009, 07:15 PM) <{POST_SNAPBACK}>

I think you should think about rewording this since it may be hurtful to those of us who have tried again and
again to be productive and functional and failed again and again. Of course you should be proud that you are
able to succeed despite this difficult disorder, but when you compare yourself to those of us who cannot do what
you do there is an implication that we are in some way flawed in character and undeserving of affordable and
adequate health care. I'm sure you could send just as effective a letter without implicating disabled people? We
should all remember that the dire state of our health care system and the greed of big pharma is not the fault of
disabled people and that everyone deserves affordable and adequate treatment.
Loki...so very sorry...I had no intention on this being hurtful to anyone. I was merely trying to reinforce the idea
that this medication is a medical necessity for many people in order to be functional and productive, and that
your average working person simply can't afford these ridiculous prices. I am working on a redraft and should
be done by the end of the day. I wasn't intending on sharing this letter with anyone else but my original
recipient, so I was focusing on my own experience. Again, my apologies if I hurt anyone's feelings.
Julie
Julieme
As promised, here's a rough draft...any feedback or changes?
Dear __________________,
As members of the largest and most prominent advocacy group for people with the neurological disorder
Narcolepsy, we would like to make you aware of what we consider to be a serious abuse of government funding
by a pharmaceutical company.
In case you are not familiar with this condition, Narcolepsy is a chronic neurological disorder caused by the
brain's inability to regulate sleep-wake cycles normally due to a deficincy of the neuropeptide, hypocretin. At
various times throughout the day, people with narcolepsy experience uncontrollable sleep attacks. In addition to
excessive daytime sleepiness (EDS), this disorder is often accompanied with cataplexy, or the sudden loss of
voluntary muscle tone. One of the biggest challenges that narcoleptics face is that despite the amount of sleep
that they get, they rarely experience the deep, quality sleep (levels 3 and 4) that most people get at night. As a
result, nighttime sleep is generally poor and fragmented.
In the past, the most common treatments for this disorder have been stimulants to treat the EDS and
antidepressants to control cataplexy. Unfortunately, these medications also have many side effects and tend to
lose their effectiveness with continued usage. However, in the past several years, doctors have began to
prescribe the drug, Xyrem, which many narcoleptics have found to be extremely effective and for some, even
life-changing. At a recent narcolepsy convention, one patient described her experience with taking Xyrem as
"going from black-and-white to Oz".
Because the active ingredient in Xyrem is Gamma-hyrdroxybutyrate (GBH), which unfortunately has also been
abused as the 'date rape' drug, this medication is highly (and appropriately) regulated and only produced by one
pharmaceutical company (Jazz Pharmaceuticals) and dispensed by one central pharmacy in the country.
While we understand that logically, this high degree of regulation drives up the costs of this medication and that
generally, the inflated prices of pharmaceuticals reflect the cost involved with their research and development,
we also know that Orphan Medical (which was acquired by Jazz Pharmaceuticals in 2005) also received federal
funding from the U.S. government as an incentive to bring this medication to market. In this case, Orphan
Medical did not actually have any true development expenses, since GBH was already recognized as a potential
narcolepsy treatment.
Since GHB is extremely inexpensive to synthesize, and the U.S Government subsidized the cost involved with
conducting clinical trials and developing a distribution program, there is absolutely no justification for the
obscene cost of this medication. Recently, the manufacturer also raised the price 30%, which pushed the price
of Xyrem to over $1600 a month! In addition, because this drug is classified as an orphan drug, there is
absolutely no competition from other manufacturers.
This seems to be a huge abuse of the pharmaceutical company, considering that they received millions from the
federal government to 'develop' this medication. It seems to me that if a pharmaceutical company receives this
federal funding, there should also be some accountability for price control.
In addition, we are also aware that in 2007, Jazz Pharmaceuticals also was involved with a lawsuit and now has
to pay approximately $20 million to the federal government, as they pleaded guilty to one felony charge
involving the company's aggressive marketing of Xyrem for unapproved uses. Is this what we are paying $1600
a month for? The people that actually need this medication for approved uses should not be punished for this
company's poor judgement and unethical business practices.
As most of us are actively involved in several narcolepsy support groups and chat rooms, we are dismayed that
over and over, we keep reading about people who simply cannot afford this medication anymore. While the
National Organization for Rare Disorders (NORD) currently offers an assistance program for this medication,
your average working-class person simply doesn't qualify for this assistance! Even for people with reasonably
good insurance (for example, a 10 to 20% copay on prescriptions), the cost for this medication is between
$2000 to $4000 a year! It really doesn't seem fair that people should be denied medication and the chance to
lead more normal, functional lives because of the greed of a pharmaceutical company that has no competition
or regulation.
While we realize that you probably receive hundreds of emails and letters from people lamenting the cost of
prescriptions drugs and medical care, we strongly feel that this situation warrants your attention because as we
stated before, if a pharmaceutical company is going to receive millions of dollars in government subsidies to
develop an orphan medication, there should also be government regulation that these manufacturers have to
abide by in terms of price-control. There is no excuse to charge $1600 a month for a medication that costs a few
dollars to produce when the United States government has already paid for the R&D of the medication. In our
opinion, this is an abuse of government funding that necessitates immediate attention and possibly new
legislation.
Thank you in advance for looking into this matter.
Sincerely,
dogdreams
Sisyphus
Posted 24 January 2009 - 04:46 AM
My doctor prescribed me Xyrem back in November and I have yet to try it. I applied for the assistance program
and was eventually denied because my health care plan (if you can call it that) pays out 80%. When I mentioned
that they failed to consider the fact that my plan doesn't start to kick in the 80% until my out of pocket expense
reaches $7500 they started the process of sending me to NORD.
I just got the application today, and I will say that I had to fill out less paperwork to buy my house and from
what I can find online I make way to much money to get assistance, but not nearly enough to be able to afford
the medicine. I am not sure I have the energy to fight to get something that I don't even know will help me.
Since my diagnosis last summer I have made a huge effort to do the things my doctor has suggested to try to
improve my quality of life. I have lost 30 pounds, exercise regularly, maintain a consistent bed time and wake
time, took the various medications that are en vogue and suffered through the side effects until we settled on
plain old amphetamine salts during the day and temazipan at night (which don't give me strange side effects),
and all I have to show for it is a huge medical bill with the promise of an even bigger one each month for the rest
of my life and I am at least as tired as I was when I started this journey.
I don't blame the people at Jazz for being greedy; they are a corporation designed make money after all. I blame
a system that removes the protection that is normally provided by a free market system. Gamma
Hydroxybutyrate isn't difficult to manufacture and doesn't pose much health risk and should be cheap and easy
to obtain. I do realize it's abuse as the "date-rape-drug" but I'm sure that could have been combated by other
means. It seems something inert could have been added to the solution to make it give off a notable taste or
something so it couldn't be easily disguised.
I'm sorry for the long and mostly off-topic post; I am just about at the end of my rope and needed a place to
vent.
The work on the letter looks good, but I have to say that at this stage in life I don't have much hope that it will
make a difference.
As someone who averages over 60 hours a week at work while struggling to fight this disease and maintain a
family, I was a bit offended by the remark that somehow those of us still able to work have done something
others have failed at. I know it wasn't meant to offend and was there to try to emphasize a point, but I feel it is
by the Grace of God that I too am not on disability and fear that without some change in my life, I will
eventually be on disability as well. I think that if the letter makes any remark at all about those on disability, it
should be that without medications like Xyrem being made readily available, there will be many more of us on
disability and those who are already there won't have much hope of ever fighting their way off of it.
Thank you to everyone who still has enough hope in our system to work on behalf of those of us who don't to
craft things like this letter in hopes of getting things changed. I wish for your success yet remain skeptical.
dogdreams
Posted 25 January 2009 - 01:30 AM
QUOTE (Sisyphus @ Jan 24 2009, 01:46 AM) <{POST_SNAPBACK}>

It seems something inert could have been added to the solution to make it give off a notable taste or something
so it couldn't be easily disguised.
That would have worked if the source was only Orphan/Jazz. But the original researchers trying to develop this
for N put the recipe online a long time ago and, much to their chagrin, people make this in their bathtubs. Well,
maybe their garages/basements at the very least. So there's no way to regulate adding a flavor to it. Sucks, but
it's true.
z (2 Pages)
z
z 1
z 2
z →
Powered By IP.Board 3.0.3 © 2011 IPS, Inc.

2600 Xyrem

Caricato da

Informazioni sul documento

Descrizione originale:

Titolo originale

Copyright

Formati disponibili

Condividi questo documento

Condividi o incorpora il documento

Opzioni di condivisione

Hai trovato utile questo documento?

Questo contenuto è inappropriato?

Copyright:

Formati disponibili

2600 Xyrem

Caricato da

Copyright:

Formati disponibili

Xyrem Price Increase - Narcolepsy Network Community Page 1 of 8

Xyrem Price Increase

Posted 22 December 2008 - 05:02 PM

Posted 29 December 2008 - 10:12 PM

QUOTE (drago @ Dec 29 2008, 06:17 PM) <{POST_SNAPBACK}>

[quote name='wardbennett' date='Dec 19 2008, 05:02 PM' post='7305']

QUOTE (Julieme @ Jan 4 2009, 08:33 PM) <{POST_SNAPBACK}>

I emailed one of their reps and here is the response I got:

Posted 14 January 2009 - 09:21 PM

This is the second email explaining the increase:

QUOTE (Ashley @ Jan 15 2009, 04:05 PM) <{POST_SNAPBACK}>

QUOTE (Julieme @ Jan 14 2009, 09:07 PM) <{POST_SNAPBACK}>

QUOTE (Ashley @ Jan 15 2009, 05:05 PM) <{POST_SNAPBACK}>

QUOTE (loki @ Jan 15 2009, 07:15 PM) <{POST_SNAPBACK}>

As promised, here's a rough draft...any feedback or changes?

QUOTE (Sisyphus @ Jan 24 2009, 01:46 AM) <{POST_SNAPBACK}>

Powered By IP.Board 3.0.3 © 2011 IPS, Inc.

Potrebbero piacerti anche