This Is MS Multiple Sclerosis Community: Knowledge & Support

You all need to get the CCSVI alliance (isn't this what they're here for) to get involved.

This whole thing just stinks of "big business" ...

If health insurance isn't for "health" purposes ... I'm not sure what good it is then. I mean what's next? Denying you getting a broken arm fixed because you have some other condition and the two have not been tested in a randomized double blind study together?


AND this makes the case for some other discussion thread ... can you reject your "MS" diagnosis. If you believe, and have been proven to have venous stenosis ... then you should be able to reject your diagnosis to pursue another ...

This is plainly a human rights problem. I have not seen any direct violence, but the sums of money involved can buy a lot. I have said that certain folk don't like it when they don't control the speed, volume, and direction of flow of money.

The insurance companies are being stupid and short-sighted, which I guess works somewhat in that business, but they could actually end up making a lot more even if they still have to pay through the nose for a year or so for CRAB drugs, when CCSVI victims get better and go back to work. Walking is not my only long term goal. I want to go back to work, and make ten times as much as Dr. Freedman. I can't do that while I am collecting long-term disability insurance.

If they help fund my recovery, the less I end up collecting. I am sure I am not alone.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Ccsvihusband, you are so right! What a great point, that we can reject our MS diagnosis, I always have. This makes more sense to me, trial or no trial....

1eye, I think you're awesome,
And Cece, never leave us
And all the rest of you, well, let us all hang in there.

Can someone post the link to BCBS's new policy about denying CCSVI to people with MS diagnoses? Unfortunately I have BCBS and I thought I was going to be covered? When did this change go into effect--has it started already--and is there anything we can do?

Thanks

www.empireblue.com/medicalpolicies/poli ... 36297.html

It went into effect 4/12. It might not be every Blue Cross Blue Shield. I'd advise that you contact your IR's office and have them check for you. I hate hearing who has BCBS. And how on earth did they beat Medicare to doing this? I thought Medicare would go first and all the insurance companies would follow.

I am so devestated by this. I was told a couple months ago it would be covered. I am one of the "lucky" ones on BCBS. Now I don't know what I am going to do....

The insurances and big pharma seem to have all the power.

Even if my hubby and I can pull together the money for one procedure, what if I restenose multiple times or have complicaitons....We could end up bankrupt!

This is a travesty.

To make matters worse, I had recently gotten a letter from BCBS raising my insurance premium by 20%. From $305 a month to $363 a month--they saidit was based on my age and their costs and not related to my condition. This does not include my large deductible either.

I am wondering why to even have insurance now. They are going to pick and choose what we can and cannot have.

I actually had a feeling it was "too good to be true" that BCBS was going to keep paying for a procedure that hadn't been through a placebo-controlled study....and that it was only a matter of time before they stopped paying. I am kicking myself for not doing the procedure earlier!

I don't see how the insurance can charge back to the patient or doctor who had already been reimbursed retroacticely. I think also they should at least have given notice to say in 1-2 months we are going to change our policy--but to have no notice at all like this is outrageous.

Given that the procedure doesn't work for everyone it is also scary the idea of coming up with $10K plus and travel expenses for something that may not work and then maybe needing restenosis. I for one am not in a financial situation to cover such a possibility.

I hate to say this but others with other insurances considering CCSVI might want to get the treatment right away because it may just be a matter of time before other U.S. health insurances stop covering too--once they get wind of what BCBS is doing.

This STINKS beyond words.

Forgot to say, ironically in the 6 years I have had MS, I never did DMDs or steroids. I have in that way saved my insurance thousands. I am so pissed I am actually considering getting the DMDs now (which BCBS will cover) and just throwing the DMDs in the garbage can. Let them pay $1500 a month for something that has a low efficacy rate if they are going to deny me something like CCSVI with a high efficacy rate!

I have been on BCBS since 2002 and they have not been great. At one point they convinced me to downgrade plans iwithin their system of plans (telling me it was a better plan). I got nothing in writing to describe the details of the plan--I only got a phone call from a sales snake -- and once I made the change and understood the new terms it was too late to change back without underwriting for my pre-existing conditions.

Ever since then I have distrusted BCBS, not to mention this 20% premium increase I got recently, which is exorbitant. But I'm stuck as no other insurances are going to take me as I have 4 pre-existing conditions.

I feel so powerless!

Has Deb Helmer had any bad feelings about any other insurance companies??? And how did she know?

I am having a bad feeling but it is mainly just feeling sick to my stomach at all of the pwCCSVI who may not be able to get it treated. I am healthier than I was three months ago, I want everyone to have that chance to be healthier.

Carol, hang in there.

CCSVI has been an emotional roller coaster from day one!!

Again, i am willing to work as many hours as i can pull staff together in order to reschedule patients sooner. time, i believe is of the essence. anyone interested, please email kmoran@aac-llc.com

I am not seeing any posts on Joan Beal's or CCSVI Alliance facebook pages re: BC/BS medical policy and am wondering if a separate thread should be started to get more people aware that time is of the essence...for everyone, not just people with BC/BS.

If this BC/BS policy change wasn't effective until 4-12-11 why was newlywed4ever who had the procedure on 1-28-11 & a check to AAC cut on 4-5-11 denied? I don't understand.

FYI

Cece started a new thread: http://www.thisisms.com/ftopict-16471.html

Dr. Sclafani, may I have permission to copy your post onto the new thread?

Apologies if starting that thread affected the conversation here. This news affects more of us than just those with BCBS insurance, I didn't want anyone to miss it.

Disgusting. There is no doubt that my health was IMPROVED by having that procedure, which would SAVE an insurance company future money. Do they ever think about that? Isn't it more cost-effective to pay for one, or even two or three venoplasties, than to pay for monthly infusions, ER visits, more and more rx's, disability-related costs, home health aides, lost work days, blah blah blah . . .

THEORETICALLY SPEAKING, POR SUPUESTO

what about those who got treated and need to be treated again because of clotting or intimal hyperplasia etc. my pcp is giving me grief again about ultrasound for my followups. said the ins. doesn't want to pay. even if i have to pay for the ultrasound myself if there turns out to be a problem--then what? i can't afford to get the treatment that would hopefully clear it up. or any additional treatments.

i'm on medicare abd bc/bs is my supplement.

and they tell us to try to keep our stress levels down. yeah right!!