Posted on 02/25/2005 4:29:47 AM PST by DYngbld
New Treatment for Multiple Sclerosis February 23, 2005
Physicians and patients are excited about the newest treatment in the battle against Multiple Sclerosis. Multiple Sclerosis is a debilitating disease that attacks the central nervous system, which is the brain and the spinal cord. In December, the FDA approved a new drug to treat Multiple Sclerosis. The drug is called Tysabri. Patients are given Tysabri in an I.V. once a month. Dr. Vernon Rowe, Founder of the MidAmerica Neuroscience Institute in Lenexa, Kansas is calling the drug a revolutionary new therapy for MS Dr. Rowe says Tysabri will not reverse existing damage but it helps prevent future damage to the central nervous system. For more information on Tysabri and the MidAmerica Neuroscience Institute, visit their web-site at www.neurokc.com Their telephone number is 913-894-1500. The Mid America Chapter of the National Multiple Sclerosis Society has several programs and services for MS patients and their families. Their toll-free number is 1-800-FIGHT MS. Their web address is: www.nationalmssociety.org/KSG/home/
Have you checked out the price tag?
I think I read $1800 per infusion, plus the cost of the infusion center, which can be another grand or two.
It's very pricey, $1,808.00 per treatment and is not yet approved for insurance coverage.
From what I've heard the cost of the infusion center to administer the drug brings the cost of each treatment close to $4,000.
Wow! Sounds like a promising drug but few will be able to afford it unless their health plan agrees to pay for it.
From what I understand because of the newness of the drug there are no cost adjustments from the company, so only those whose insurance covers it, or who are financially able will probably be using the drug.
Also heard that they may limit the number of people who take the drug in the first year. Don't know if that's because of supply problems, or because of wanting to limit damages if a problem occurs in the general population.
So far though, I've been following the comments of some folks who've had infusions and they love the drug. They think it actually is having an effect on their symptoms, which is quite different from the other treatments (interferons, copaxone) for MS.
I believe the new drug has been in tests only two years but that the FDA approved it on a fast-track as it showed great promise. I have R/R MS that is currently mild in nature so until it comes down in price or is approved for insurance coverage i probably won't be taking it.
I have heard it does some wonderful things for those whose condition/exacerbations are worse than mine.
There's always hope...which is a wonderful thing.
Oxford Health Plans in the NY Metro area approved coverage last week. My wife underwent a one-hour Tysabri (Antegren) infusion yesterday.
Aimspro, available in the UK, also offers hope, though we will take this one step at a time.
I have RRMS and am stable on Betaseron, so my neuro said we'd wait awhile to try the Tysabri (if my insurance will pay).
But I'm amazed at the instant improvement that some folks are having from the drug.
I don't know many people that noticed an instant, or for that matter, any improvement on symptoms with one of the interferons or copaxone.
I'm following it closely.
I've heard that some insurance companies are covering the cost of a conventional treatment (Avonex, for instance) and the cost of the Tysabri.
Other folks dropped the other treatments when the infusions started.
OESY, I'll be interested in hearing how your wife is doing with the infusions.
Elan traditionally does do cost adjustments for special cases. It might or might not happen immediately in this case, however, as she and her partner, BIIB, struggle to ramp up production to match explosive demand.
The decision was made to initially limit the number of patients on Tysabri so that any possible production wrinkles would not leave those already on it without. That was a tough, but necessary ethical decision.
The good news is that some very big production facilities are being brought online post-haste. The one plant that is already operative has one of its three lines temporarily down, but that's only because it's being tested for a new procedure that would perhaps quadruple output. Once that improvement is FDA approved, as it is expected to be perhaps by midyear, production should no longer be a bottleneck.
In addition, one new plant is close to being online, well ahead of schedule, and another in Europe is in the works.
What many do not know is that Tysabri holds promise for more than MS. Many auto-immune diseases - rheumatoid arthritis, Crohn's, perhaps Parkinson's and even Type I diabetes, and others - are going to be addressed by its unique function.
Tysabri goes for $23,500 per year. I hadn't heard of the huge charges for infusion that have been mentioned here. They don't seem reasonable at all for two hours of nurse supervision, and I'd be surprised if they bear out. But when considering the cost of the drug one must factor in the savings in other medical treatment no longer needed - hospitalization and doctors and other drugs - and the increased ability to lead a productive life. All that is on top of the human suffering and quality of life issues. For all these reasons insurance companies are rapidly falling into line in paying for Tysabri, especially now that confirmatory two year data is out.
The official way to procure Tysabri is indeed slow. Dealing directly with your neuro and insurance company is far faster than going through BIIB's "facilitator", and will get you scheduled for your first infusion within days.
Good luck.
Check this out. Especially the comments.
Average wholesale price for Tysabri (NATALIZUMAB FOR IV INJ CONC 300 MG/15ML), $150.64066 per 15ML vial. Don't know what the standard dosing will be for this type of treatment though.
Paul, Thanks for the info.
When I was researching the drug, costs, efficacy, etc. I went to some of the MS forums to see what people were saying.
If anyone's interested, here's a link to the Massachusetts General MS Forum (it's open to public view) on links dealing with Tysabri.
http://brain.hastypastry.net/forums/search.php?searchid=362147
Without my insurance the cost of my wife's Avonex would be more than we make together, but cost has gone down, and they have made it easier to use as well. Her symptoms seemed to stabilize once she began taking it.
The other day I read some MS patients were using Viox. (Always looking for that 'magic bullet', knowwhatImean?)
She was diagnosed `primary progressive' and pain management is critical, she's using opiate patches now. Considered a shunt. I would be interested also in your spouse's progress, and wish you best of luck.
The tough part about primary progressive is that they don't have any specified drugs for it.
You might want to check out those threads under the link I posted.
I think I remember reading a post from somebody with primary progressive.
Also, anybody reading the posts should probably know that when they're talking about the CRABs, they're talking about the meds: Copaxone, Rebif, Avonex, and Betaseron. Don't want any confusion on them saying they have crabs, LOL.
LOL, Dawn53...i had always referred to them as the ABC drugs. I like your reference better. Thanks for the smile.
thanks, will do. Good info.
Remember as a kid going to the carnival, then when it's too late yelling: 'Hey, stop this ride, I wanna get off!' It's something like that.
What? $4,000 to stick a needle in your arm and hook up an IV? Someone is overpaid.
It must have cost my insurance company a bundle when I had to go for an IV twice a day for 7 days for anti biotic treatment for an infection I had. (cellulosis, from a cat bite)
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