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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CureIous » Sun Aug 09, 2009 11:07 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:17 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Loobie » Mon Aug 10, 2009 4:54 am

CureIous wrote:are you seriously considering dropping the MS drugs after this? I know that's a highly personalized decision for all of us.

Mark.


I stopped my Tysabri...so far so good as far as progression but it obviously hasn't been that long.
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Postby Needled » Mon Aug 10, 2009 6:22 am

Another thing to think of regarding insurance -- my policy has a lifetime out-of-network benefit maxium of $1,000,000, then they kick me to the curb, regardless of whether any further claims are in-network. That really concerned me when I found out that all my prescriptions, including Copaxone ($25K/year & rising), are out of network. To date, my tab for out-of-network expenses is close to $200,000. Dr. Dake is out of my network, so even though I would only have to pay a $5,000 deductible for the procedure, I would still add another $80K to my out-of-network expenses. My total would then be close to $300,000. With the cost of the crabs, and likely any new pills, it feels like my days of coverage are numbered...
So just keep in mind how this might affect your policy limits. Hopefully the procedure will eliminate the need for any further drugs in the future, but it's still a good question to ask.
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Postby Sharon » Mon Aug 10, 2009 9:24 am

Mark wrote
Question, are you seriously considering dropping the MS drugs after this? I know that's a highly personalized decision for all of us.


I decided to go back on the LDN at a reduced dose -- it costs me very little, has no side effects and I am hoping will help to build the strength in my left leg with the extra boost of endorphins.

Sharon
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Postby catfreak » Mon Aug 10, 2009 11:49 am

Mark wrote:
Cant wait for you to get in Cat. Question, are you seriously considering dropping the MS drugs after this? I know that's a highly personalized decision for all of us.

Mark.


I will probably stay on it until some form of pill comes out. I don't want to stay on it longer than 18 months for sure. I got a lot of discussing with my Neuro to do!! The Ty has "caused" me to get a UTI so I know it is bringing my immune system down. I go Friday for Infusion 6 so I will see if I have to get on a prophylactic antibiotic for the UTI's.

I am ready to go today for CCSVI!! :)

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrhodes40 » Mon Aug 10, 2009 2:14 pm

Needled I am in almost the identical boat coverage wise and I also use copaxone. I saw the bill for mine last month it was 2700 USD.

$2700!!!!! In God's name why?? It used to be 1200 and I thought that was bad. If it had gone up at the same rate as inflation it would be about 1700 now.

Teva has been fighting the generic release; no wonder. What makes me angry is that like you my lifetime limit has been gobbled up significantly by this drug. It needs to go generic and save us all from spending everything on it.

BTW I am keeping my cop cause it controls my arthritis--I have RA too.

As far as that goes it is a cheap and safe drug compared to my other RA options and I swear to you I have NO joint damage at all. None, but they are still gouging.[/quote]
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Mon Aug 10, 2009 2:29 pm

Marie - looks like 2014 before Copaxone goes generic
http://multiple-sclerosis.emedtv.com/co ... axone.html
:cry:
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Postby mrhodes40 » Mon Aug 10, 2009 2:52 pm

Thanks Sharon! i guess the generic manufacturers are trying to get out ahead of the patent expiration date! The deal I saw was that teva had been the losers in a suit in Europe to prevent generic manufacture: they argued it was too sophisticated to be made by generics because it was biologic and therefore they'd have to do studies on their specific version. The court said no....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby radeck » Tue Sep 15, 2009 9:52 am

turtle_fi wrote:"My yearly MRI costs around $6,000 - "


In the US, MRI's often cost several times what they cost in Europe on comparable scanners. The questions to those here who had their diagnostics done in the US is do insurances (say PPO) even cover their part for it, i.e. the 60-80%, depending on whether it's in-network or out-of-network? Or is there a problem with pre-authorization because this kind of venogram not a standard diagnostic?
Last edited by radeck on Mon Jan 25, 2010 11:54 am, edited 3 times in total.
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Postby ErikaSlovakia » Tue Sep 15, 2009 10:38 am

They do MRV in Poland or Slovakia for sure.
Dr. Simka is going to meet a radiologist on Sept. 22 to arrange the best possible MRV for CCSVI patients.
As soon as they are ready Dr. Simka will contact me again. I will do my MRV in Poland. I also plan it in Slovakia but I do not know how to help the radiologist. I do not have any instructions for him. It would be free of charge for me in Slovakia. But the quality???

The cost of my simple MRI of brain in Slovakia is about 250 Euro.
I will for sure know the price of MRV in Poland as well. I will perhaps pay for it because my health insurance company is somehow lasy to help me.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby radeck » Tue Sep 15, 2009 12:41 pm

Needled wrote:With the cost of the crabs, and likely any new pills, it feels like my days of coverage are numbered...=


Not if health care reform happens. Life-time maximums would become illegal in this case.
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Postby Needled » Tue Sep 15, 2009 1:31 pm

I know, Radeck. Imagine -- No lifetime policy limits and no denials for patients with pre-existing condidtions. It sounds almost, well, civilized. Not to turn this into a discussion on health care reform, since there was a long thread on the general forum on that, but wouldn't that be something???
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Postby ErikaSlovakia » Fri Sep 18, 2009 11:38 am

Rici, the patient from Poland who lives in Germany and will have the OP at the beginning of October by Dr. Simka will pay 2500 Euro.
The rest of EU patients including me have high chance that our health insurance companies will pay for it.
I think he is the first patient in Poland, so normally will be the price different. I am not sure yet.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Insurance denied claim for testing - options in Europe?

Postby radeck » Fri Sep 18, 2009 7:06 pm

My insurance, Healthnet PPO, has denied the claim for my MRV, so I'm thinking about getting it done in Europe instead. Does anybody know where to best get an MRV at present? Poland, Finland, Italy, and Germany were mentioned in other threads. How long would the wait will be? What might be the associated cost? Do they accept cash payment?
Last edited by radeck on Sun Jan 24, 2010 4:23 pm, edited 2 times in total.
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Postby MrSuccess » Mon Sep 21, 2009 10:43 pm

It seems to me that the Health Insurance providers have already done their homework. These are not stupid people . They KNOW that this procedure is being done to treat MS , not headaches or whatever.

As there is nothing to sell in the CCSVI marketplace ,the MONEY is nowhere to be seen. That should tell us something.

In fact , this new idea and procedure may save the health insurance company's untold amounts of money. And that has their attention.

I predict that CCSVI will be a new medical standard coupled with an oral medication , allowing not so much a cure , as a control of MS.

I do hope I'm wrong about the need for oral medication .....

I am very confident that Dr.Zamboni and Dr. Dake will make this happen.


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