This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,
I have ms and I'm on copaxone. I've noticed that this desease can be very expensive. I'm working on a letter to my congressman about the cost of having ms in relation to all the conversations about health care.
I'd love to hear from anyone about the cost of treatment and I'm wondering if anyone has any idea what the percentage is of patients who want to be on a CRAB but can't afford it?[/b]

Also I'm wondering about the cost of stuff you need for ms that is probably not covered by insurance like scooters, chairs, canes, etc.?

And don't forget the bladder issues...pads aren't covered. And transportation, if you can't drive to work, but are able to work still.
(But, by the way, I think the CRABs are a waste of money).
Oh, and also, I would like my husband to get a walkaid or a Bioness thing, but we don't have the cash or the insurance.

I knew I had read a relatively recent study on the cost of MS, and I found the abstract for you at least. The full article requires a subscription to Neurology, but I was able to get a copy from work at the time. They estimate the cost at $47,215 per patient per year in the U.S. (there are other studies for every other country). It struck me at the time because my MS generally costs me only around $200 per year - for one single neuro visit and one day off work to go to it. Last year I got them to send me to PT for a month, though. And there would be some OTC meds & misc.

Also, that was before the newest meds like Tysabri raised the cost.

Here's the abstract.
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http://www.neurology.org/cgi/content/ab ... 66/11/1696


NEUROLOGY 2006;66:1696-1702
© 2006 American Academy of Neurology

Costs and quality of life in multiple sclerosis
A cross-sectional study in the United States
Gisela Kobelt, PhD, Jenny Berg, MSc, Deborah Atherly, RPh, MPH and Olympia Hadjimichael, RPh, MPH
From the Karolinska Institute (G.K.), Stockholm, Sweden, and European Health Economics, France; Stockholm Health Economics (J.B.), Sweden; University of Washington (D.A.); and School of Medicine (O.H.), Yale University, New Haven, CT.

Address correspondence and reprint requests to Dr. Gisela Kobelt, European Health Economics, 492, Chemin des Laurens, F-06530 Speracedes, France; e-mail: gisela.kobelt@he-europe.com

Objective: To estimate current costs and quality of life (utility) of patients treated with disease modifying drugs (DMDs) in the United States, and to investigate the effect of disease severity on costs and utility.

Methods: Data on demographics, disease information, resource utilization (including work capacity), and utility were collected directly from patients in a cross-sectional postal survey. Patients were selected randomly among participants in the North American Committee on Multiple Sclerosis Patient Registry (NARCOMS) receiving DMDs. Mean annual costs per patient (2004 USD) and mean utilities for the sample and for different levels of functional disability are estimated from the societal perspective.

Results: The target answer rate of 50% was reached and 1,909 patients were included in the analysis. The mean age was 49 years and time since diagnosis was 13 years. A total of 10.5% of patients had primary progressive, 47.6% relapsing-remitting, and 33.3% secondary progressive disease. A total of 28.8% of patients indicated to have experienced a relapse during the past 3 months. Total average costs are estimated at $47,215 per patient and year. Of these, 53% were for direct medical and non-medical costs, 37% for production losses, and 10% for informal care. Mean utility in the sample was 0.698.

Conclusions: Consistent with other studies, costs and utilities were significantly correlated with functional capacity. The proportion of costs represented by disease modifying drugs is considerably lower than estimated in other studies, as all costs related to the disease are included.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

hi.
I took Avonex for about 6 years. Finally, it was too much $$.
I called Avonex directly to cancel.
They freaked.
I received it free for the next 2 years until I got sick and tired of being sick and tired.
Then I just told them to keep it. They freaked again.
You might want to try that. The companies want you and your data!!
Rose

Try LDN, less than 40$/month!