This Is MS Multiple Sclerosis Community: Knowledge & Support

I enrolled also... (well, they have my info. anyway - if that counts??) I have not heard anything... Time seems to be standing still as the waiting is really starting to get to me.. I probably shouldn't watch the videos of folks getting the treatment and making progress either.. however, it's addicting...

Anyway, I'm getting ready to send Megan an e-mail. If I get a reply, I'll let you know.. I think I read somewhere that they are only accepting local participants? not sure tho.. I'm about 6-7 hour drive away so probably not considered local...

I was scheduled with Dr. Sclafani for next week until they closed up shop.. I just need some relief - hopefully I can get tested/treated soon..

I'm so frustrated!!!!!!!!!!!!!!!!!!!! To add insult to injury, I blew off an appt. with a local Int. radiologist in March because I figured I was in... My luck (and life) continues to suck!!!

I just re-read Megan's e-mail... looks as though I may have been wrong about seeking only "local" pt's..

I hope we all get calls soon !!!!!!!

I talked with Debbie Hill yesterday she has same job as Megan and she advised another two weeks.

Thanks Tlynn.. I heard back from Megan also... all very positive and they are still working on IRB approval (back and forth)... They will contact us upon approval....

I haven't tracked the clinical trial listing... but while looking over it more closely today, I believe they added provisions for future evaluations and treatment if stenosis re-occurs. I think this is great.

LINK

Thanks for the update MEGAN !!!!!

Oh almost forgot...

OK... so I'm in "waiting mode" again... I've been racking my brains (what little I have these days) to find a way to help support ccsvi's continued momentum.

My conclusion - if I can participate in clinical trial, my info. can be forever, be used to further the understanding of the potential link between MS and CCSVI.. When (trying to stay positive here) I get into a study, I'll do my best to document the process...

Lets hope this treatment is so successful that it becomes mainstream...

Maybe down the road - especially if I regain some function and energy, can I do more..

Anyone got any news on Dr. Mehta's trial? I know it has only been about 10 days since someone said "another two weeks," but just thought I'd ask.

I talked to Debbie Hill today. They are still waiting for approval.
...well.......my MS does not want to wait.
I asked her if there's anything we can do. She said no. ( at least not yet, but she thought that was nice )
Let's just hope that the authorities really care.
I don't know if they are really concerned about the procedures safety!!!
Is MS safe??? Is it safe to leave people alone with their veins narrowed?
I don't know what to do.

It makes me think: inaction is a form of action.

Does anyone know when Dr. Mehta's trial entered the IRB process? If two to three months is the expedited way through, to early IRB approval, it makes me wonder how long is the long way through.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I think they had the final protocol at the end of February and we thought yay !!! they are going to start calling us in March. but then we realized stuff needs to be approved.
who is doing the approval? IRB?
Which IRB is involved?

I haven't followed the clinicaltrials.gov listing.. but when I checked it last it appeared to have changes? with my brain fog I can't figure out exactly what they are so, who knows? I believe they typically note (by date) updates/changes... but don't list before and after, simply that it was updated..

Maybe this is the usual back and forth ??

Still wondering how they can pull off a 500pt trial and bill our insurance at the same time.. I'm totally throwing this out there, so if anybody knows please enlighten me..

I just need to hear some good news!!! Come on MEGAN!!!! give me a call!!! j/k

Here's the link again. There is a link to "History of Changes" near the bottom. It shows none.

http://clinicaltrials.gov/ct2/show/NCT01089686?term=ccsvi&rank=1

As far as charging for a trial, that is purely an issue of recruitment and sponsorship. If the people running the study feel they will have trouble recruiting people, and they can find a sugar daddy, then the treatment might get subsidized or even paid for. Sometimes participants even get paid to participate.

Needless to say, there is no sugar daddy here and they will probably have no problem filling the study slots.

But won't insurance companies refuse to pay because it is a trial?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Who can say what each individual insurance company will decide to do. I could see them making a case for not paying for a Doppler of MRV since MS has not been officially accepted as indicative of that test; However, if those tests reveal a problem with venous flow, I would think they would be on shaky ground in rejecting the PTA. If they did, you would have a good case in your appeal, especially if you felt like you no longer needed expensive DMD's any longer.

I can hear myself now, "Well, I was considering stopping these $30,000 per year meds, but after my claim was rejected I'm suddenly feeling like I still need them."

Incidentally, I have seen an appeal through once on a different medical procedure that was initially rejected by an insurer and eventually convinced the medical director to pay for my claim. I is not impossible.

Thanks FlashHack...

I guess I was just too tired (lazy) to read it again... lol

Anyway, during the back and forth e-mails w/Megan - at first they were not sure how the study would be funded.. Typically it is of no cost to the subject.. However, at one point it was mentioned that our ins. would be utilized?? Just wondering how it all works - Clinical trial (experimental) billing insurance, who usually won't pay for experimental procedures.... total disconnect here..

Realistically, most of us would just figure out a way to pay for the procedure "out of pocket" anyway. The aftercare and data will be invaluable tho.. especially for the future and the nay sayers too..

Todays data (google mining) is an extremely valuable commodity.

Keep in mind Insurance companies make money by not paying claims. One should expect them to deny claims tied to new treatments for MS. That doesn't mean they won't pay them. My insurance for instance has an appeal process that I must follow if they reject a claim. If they deny my appeal, I can appeal again. If they reject appeal number 2, I can then talk to a lawyer and proceed that way.

Important thing to do during this process is find individuals that have had the procedure for MS and their insurance did pay for it. You need to include this information in your appeals, document which insurance companies are paying for it. Also document individuals that have had the procedure and have shown improvements, this will be valuable also.

Maybe a sticky or two could be started.

1. List Insurance companies that have paid for the CCSVI treatment when it was done for MS.
2. List of individuals that are willing to list their name and how they were prior and post procedure. - The Tracking Thread probably takes care of this one.

I think both of these will be valuable for appeals.

I believe the stat is that 70% of appeals end up getting paid for by insurance companies.

Many people won't appeal and insurance companies know this. So it isn't hard to appeal, so you need to do this if your claim is denied. It is an easy process, usually just a letter with some facts like I listed above.
Blaine