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Hi carollevin,

You wrote a great post.

I'd just like to comment on what you said about letters and appeals not helping much. Appeals can, indeed, be won, perhaps more often with smaller insurers than larger ones. A study I recently read (sry, don't have the citation) said ~40% of appeals are granted.

I think when we're talking about this much money, anything we can do, we should try to do, even if we're only taking baby steps right now. And having help would be appreciated.

Best of luck.

1eyeAngioplasty should not be denied to anyone because they have had a diagnosis of 'MS'. Insured treatment of known health problems with known health procedures should not be denied to anyone because they have had a diagnosis of 'MS'. Full stop.

People with MS are seeking diagnosis of ccsvi and treatment on their veins to have a chance to get some relief of their MS symptoms. Zamboni's focus was on people with MS.

pklittle wrote:

1eyeAngioplasty should not be denied to anyone because they have had a diagnosis of 'MS'. Insured treatment of known health problems with known health procedures should not be denied to anyone because they have had a diagnosis of 'MS'. Full stop.

People with MS are seeking diagnosis of ccsvi and treatment on their veins to have a chance to get some relief of their MS symptoms. Zamboni's focus was on people with MS.

But do we know they are MS, rather than CCSVI, symptoms? But to keep on track, I am open to the momentum that's happening on this thread.

I would like to feel less like a victim here. Appeals & letter writing campaigns are something we can take part in. We have too much to lose and I would welcome any good letter writers out there to provide "samples".

Dear Newlywed,
First off, I really think (albeit without knowing all the ins-and-outs of your situation), that AAS owes you that check for $5200. If AAS has already sent it back to BCBS, then BCBS needs to send it directly to you or send it back to AAS who can then forward it to you. The change did not go into effect until May 3rd!

Excuse me if I am out of line here, but it seems to me a mistake was made because your visits were done BEFORE the change went into effect. I may be wrong, so excuse me if I am being too bold. I have been in situations where I had t fight to get overpays back from doctors' offices.

As to the letter writing/appeals process, I think as individuals our best course of action is the appeals. I would emphasize that Doppler or MRV or IVUS (whichever it was) showed that you had ___% blockage in the ___ and ___% blockage in the __, indicating that your blood was not flowing in he sufficient range. I would enclose a letter from the IR doctor that treated you stating the same and perhaps even a second and even third letter from other IRs also stating the same and explaining that without this procedure your blood could not flow properly and put your health at risk. ....I am not sure whether it is better to put the part about having MS in there or not, since that seems to be the insurances' way of getting out of paying. It may be better to just stick with the CCSVI diagnosis alone and that your testing and procedure clearly showed you had blockages that were out of range for a healthy person per establshed standards of healthy blood flow.

Lastly I wanted to say, I can't recall if I said this before, that in my own personal career background that involved research and my own dealings with insurances, I really think that as a united group of patients we may not have much leverage and what is really going to be needed is at least one double-blind placebo controlled study showing that CCSVI is more effective than placebo in improving MS symptoms. That is when the FDA steps in and approves a technique and that is when insurance must cover.....I think, in my humble opinion, that until that time comes the best we can do is each individually appeal any denials to our insurance, as for example some of the comments I wrote in the above paragraph.

I may be wrong. These are my opinions.

Carol

I really think that as a united group of patients we may not have much leverage and what is really going to be needed is at least one double-blind placebo controlled study showing that CCSVI is more effective than placebo in improving MS symptoms.

Does Dr. Siskin's study meet this criteria? Does anyone know where it stands/how far along he is?

I was just looking into that. Here are the details of Dr. Siskin's study. The link was included in the references of the horrid BCBS policy change document.

http://clinicaltrials.gov/ct2/show/NCT0 ... SVI&rank=2

What about Dr. Dake's study, will it be of use against the insurance companies? He is looking at the outcome parameter of whether or not CCSVI venoplasty improves blood flow. It is easy to expect that his results will be, yes, it improves blood flow. This does not deal with it as a treatment for MS but as a treatment for CCSVI.

Newlywed, just to clarify a little more of what I wrote above (excuse my typos -- darn brain fog and vision), I would write something like the below letter to the appeals department, for example. Please understand though that I am a newbie so I may get some of the terms wrong ad I am just using examples of dates and examples of blockages and examples of doctors names below. This is just a general idea for what it's worth:

Dear BCBS Appeals Department:

I am writing in regard to my medical procedure on 3/1/2011, provided by Dr. Smith, for which my health insurance coverage denied testing and treatment costs. This refers to medical claim number 876421.

As indicated in the enclosed letter from my physician, Dr. Smith, a Doppler Ultrasound showed serious blockages in my veins which, as per Dr. Smith, warranted treatment. Upon testing and treatment it was discovered that my right jugular had a 70% blockage and my left jugular had an 80% blockage. My blood was only flowing at a rate of ___, whereas norms in healthy people indicate that blood should flow at a rate of ___ to ___. After the treatment, I was re-assessed and this reassessment showed that my right jugular is now only 10% blocked and my left jugular is completely unblocked and my blood flow is now in normal range.

Enclosed is a letter from Dr. Smith explaining this as well, and explaining the consequences to me if I had not gotten the procedure. I have also enclosed letters from Drs. ___ and ____ which also further explain the implications of the CCSVI that I had, which has now been corrected.

In light of my definitive diagnosis of CCSVI and the corrective treatment that was deemed medically necessary by my physician, my doctors and I feel strongly that this procedure was necessary and that I should receive reimbursement.

Enclosed please find my physicians' letters and medical records documenting the CCSVI blockages. I look forward to your response.

Sincerely,

Susan Jones

Should the term 'CCSVI' be left out of the letter? Maybe it is better to talk about central venous stenoses.

Are you saying they should be denied angioplasty procedures because they have a diagnosis or label, or pre-existing condition called 'MS'?

If an 'MS' diagnosis is on your chart, does that mean you should be unable to claim payment for CCSVI treatment, regardless of whether or not it affects your 'MS' symptoms? I can understand people being possessive about nomenclature they might have gotten used to, but never to the extent that it justifies leaving those 'MS' symptoms alone because we don't want to offend anyone by treating them!

Sure, call them 'MS' symptoms. But do NOT say I can't claim them on my insurance. This is a vascular problem, and a vascular procedure. Treating 'MS' symptoms is a happy coincidence, a side-effect of healthy bloodflow, a more effective, healthier epithelium, better tissue oxygenation, and more available glucose. This is not a Disease Modifying treatment. It treats symptoms. Nobody can prevent or restore CCSVI, because it is caused by a malformation.

What its relationship is to the actuarial entity we call 'MS', I doubt I'll ever be able to convince anyone. That's one reason I think 'MS' must not be used as an excuse to prevent these procedures.

pklittle wrote:Does Dr. Siskin's study meet this criteria? Does anyone know where it stands/how far along he is?

Dr. Mehta's trial will be done sooner. It is also linked to on the BCBS document.
http://clinicaltrials.gov/ct2/show/NCT0 ... SVI&rank=3

Would this qualify?
He released some preliminary (4 months) findings at ISNVD, I cannot right now remember what they were.

Study completion date is September 2011. Estimated enrollment of 600! I cannot imagine they found that many participants.

I am not sure if one study is enough to satisfy the FDA or not. I hope so.....I think, but am not sure, that it is the FDA who approves treatments based on study results.

For anyone who doesn't know, the gold standard of medical research studies is a double- blind study with a placebo arm...Half the patients get treatment, half do not get treatment, but neither the patients nor the investigators know who got the treatment. Participants are identified by a number. Then statistics are run on each group (treatment group and placebo group) and the goal is that the people that got the treatment did significantly better on some measures (e.g., blood flow, self-reported fatigue, etc) than the people who got the placebo.

I don't know if the studies mentioned offered that?

As to the other point made about whether MS should be mentioned in an appeals letter to insurance, that is a tough one. Because it has not been established whether CCSVI causes MS or they are two separate illnesses that tend to go together, or CCSVI is a consequence of MS, or by relieving CCSVI one gets the added benefit of relieving MS symptoms, etc, is still unknown, I think....But the bottom line is the insurance doesn't like the idea of CSSVI for MS....That is why when I personally would write a letter that would try to write whatever is going to make sense to the insurance company, rather than what makes sense to me. I would try to think like the insurance company while writing the letter.....I think to the insurance the issue that the person has proven CCSVI is what would be important so that would be what I would emphasize. I am not trying to be unethical here to hide the MS. Instead, I am trying to figure out a letter that would get me the reimbursement, so hence I would be trying to think the way the insurance panel thinks.

Also wanted to say, someone corrected my post and mentioned appeals is an important part of the process. I agree--I think right now that is one of the best tools we have.

I would call your plan, ask for a case manager and ask for a review.

One other thought before bedtime:

I read the Empire Blue Cross statement and it states that CCSVI in MS in not medically necessary (or something to that effect). However it does not specifically say "we will not cover this."

Is it possible that Dr. Sclafani's office interpreted the statement to mean they would not be covering it, when in fact they still are?

So far we have not heard any other IR talk about BCBS denying coverage, have we? Including Dr Sisken where surely they would know about it and it has not been mentioned on CCSVI in MS on FB.

Maybe we have gotten ahead of ourselves and this is still being covered?

It was one of the IR's office that told me the change was effective May 3rd, but that is not gospel. Maybe that was their interpretation of the BCBS statement.

This may be wishful thinking, but is just occurred to me when I looked over the policy statement again and it does not specifically say "we will not cover this"

carollevin,

WOW!

Thank you so very much for all your help -- your ideas are really terrific. I love the sample letter you've given us and your advice that we should think like an insurer when we're writing letters for the appeal process.

I would also suggest contacting your local representative and indicating on your letter that a copy is going there. You could also send a copy to members of the Congressional Multiple Sclerosis Caucus. With luck, your representative is on the caucus. (Maybe she or he will join!)

http://msactivist.blogspot.com/2008/04/ ... aucus.html

On the left, if you scroll down, you'll see the members as of 2008.

This is exactly the type of issue that needs to come to their attention.

Each local MS Society chapter should have staff who deals with health care/insurance advocacy as well, and you might get some good advice there as well. I don't know if you've ever looked to that route for assistance. They know all about insurance denial and appeals!

If you don't know who to call, look at the NMSS home page and call the MS Navigator.

And just for being obvious -- save every single piece of paper, take notes of every conversation and name and time, and keep your dignity and your confidence!

I remember it actually took more than a year and several appeals to get BCBS to reimburse me for the home birth of my son. But we did eventually get it done. Hang in there!