Get treated ASAP if you want insurance to cover it

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

Get treated ASAP if you want insurance to cover it

Postby Cece » Thu May 05, 2011 8:34 am

I wanted to stick this in the title of a thread, since sometimes all I do is scan the titles.

Blue Cross Blue Shield has stopped paying for CCSVI treatment. They have a policy change document saying it is investigational. Even when not coded as being treatment for MS (but for venous stenosis), people have been denied.

So far this does not affect other insurance companies but it does not take a visionary to see that it will spread, perhaps very quickly.

What this means for us: If you have not yet been treated and plan to be treated under insurance, asap asap asap get in there while insurance is still being accepted. Don't think you are safe because you do not have BCBS. This could (and will) happen to any of us.

What it also means: It's possible that even if insurance is accepted at the time of the procedure, any new policy might be able to be retroactively applied and the provider expected to return funds and either write that off or bill the patient for the amount. Some providers (Pacific Interventionalists, CCSVI Atlanta imaging) have always required that the patient pay upfront and submit to insurance themselves so that the risk was entirely on the patient.

We have been through many phases. We had the summer of Dake, we had the shutdowns and secrecy, and we had the explosion of new IRs opening shop every day with all different ideas on how the procedure should be done. Here in the US, this looming change in insurance company policy looks like the next phase for us.

I expect to be personally affected by this. I've had the procedure but I know the odds of restenosis. I have an ultrasound appointment next week. I am more stressed now wondering whether the doppler ultrasound will still show CCSVI and what to do if it does.

This new phase will not be the final phase. The final phase will be CCSVI treatment being proven effective and for it to be available to all, here in the US and in Canada. But how many years until we reach that final phase? This is painful and it is a roller coaster and it is likely to be expensive and there are no guarantees.
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Postby MaggieMae » Thu May 05, 2011 9:05 am

That's scarey ---

What it also means: It's possible that even if insurance is accepted at the time of the procedure, any new policy might be able to be retroactively applied and the provider expected to return funds and either write that off or bill the patient for the amount.
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Postby ikulo » Thu May 05, 2011 9:09 am

I would offer a different view point and opinion.

Remember that the angioplasty is not a one time treatment. Many people who have undergone the procedure have had multiple follow up procedures, and some have gotten much worse even after the follow ups. If you get the procedure now, hoping to have it covered, you run the risk of needing follow up treatments and care in the future without proper insurance coverage.

I understand that people are very anxious to get this treatment, but rushing into this now is very risky because of a lack of adequate follow up care and insurance uncertainty.

Angioplasty is not a one time treatment, it takes many, many follow ups. Even Joan has pointed this out.
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Postby PCakes » Thu May 05, 2011 9:15 am

Ikulo,
As a Canadian I am not sure of how your system works but, could it be if a provider approves the initial treatment that they might be on the hook for any follow-up as well?
I am so sorry to hear this is happening. :(
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Postby HappyPoet » Thu May 05, 2011 9:21 am

I'd like to add that even Medicare has denied coverage when Dr. Mehta specifically asked about coding for CCSVI.

We've talked about this before. Every patient who is denied MUST, MUST, MUST appeal even if the process is not easy.

Unless the doctors get involved in advocating for CCSVI testing/treatment, it may be a very long battle with the insurers in the U.S. Note that cheerleader has already informed me that the CCSVI Alliance will not help -- it's not their mission she said.

But why can't the Alliance create a web page that gives pointers/advice on how to appeal? And come up with other ways to help us. Otherwise, if patients can't get treatment, why is the Alliance even needed? To tell us about a procedure that we can't have?

If I knew last year before my first procedure that Medicare might change its mind, I would not have gone down this path. Ten thousand dollars a pop is too rich for my blood (both puns intended).

Best of luck everyone.
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Postby bluesky63 » Thu May 05, 2011 9:57 am

That is an excellent point -- the weight of each and every person filing an appeal would make a difference. It would be perfect if all the important medical information were gathered succinctly so the appeal was most effective.
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Postby Johnnymac » Thu May 05, 2011 10:39 am

we were caught in this BCBS mess, and I would implore everyone faced with insurance challenges to write your local government, senators, congressmen, and anyone who has a say/vote in healthcare legislation. Talk to your HR/Benefits department and find out who your patient care advocate is and get in touch with them.

It sucks, its draining, and bottom line its not right that we not only have to deal with the big-business aspect of medicine but the the hardship of disability as well. Stay strong, fight it.....when we get back to Texas I will be printing up a large stack of letters that I'm writing to Blue Cross Blue Shield and will be mailing one every day...the same letter every day...to the same group of board members at BCBS until they make a change to their policy. If I have to send them a letter once a day for then rest of my life I will do it.

Its up to us caregivers and patients to fight for ours and our loved ones rights.

To echo Cece's post, don't wait any longer than you have to for testing and treatment, who knows how long before other insurance companies start denying coverage for CCSVI.

Courtney had her ultrasound today, tomorrow the wonderful Dr Sclafani will work whatever magic he can.

Best wishes to all.

-John
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Postby jamit » Thu May 05, 2011 10:47 am

and the more posts you add with this type of title the more you will alert the insurance companies to look into this and do something about it. They are on the internet too you know.
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Postby HappyPoet » Thu May 05, 2011 11:03 am

John,

Please give Courtney my best wishes. Dr. Sclafani is as terrific in person as he is online.

Thank you for sharing your experience, especially at this very busy time for you! If you weren't already so busy, I'd ask you to share some of your letters with us because they might help someone else in their battle... maybe when things settle down for you and Courtney.

This is where CCSVI associations can be VERY helpful. People could send copies of their letters to the associations who could then put them up on their websites... a centralized location of information and letters.

Again, best wishes to Courtney.

:)
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Postby ikulo » Thu May 05, 2011 11:31 am

PCakes wrote:Ikulo,
As a Canadian I am not sure of how your system works but, could it be if a provider approves the initial treatment that they might be on the hook for any follow-up as well?
I am so sorry to hear this is happening. :(


I'm uncertain about the logistics of follow-up coverage, maybe someone more informed on the matter can comment...?
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Postby Cece » Thu May 05, 2011 11:37 am

ikulo wrote:
PCakes wrote:Ikulo,
As a Canadian I am not sure of how your system works but, could it be if a provider approves the initial treatment that they might be on the hook for any follow-up as well?
I am so sorry to hear this is happening. :(


I'm uncertain about the logistics of follow-up coverage, maybe someone more informed on the matter can comment...?

I am no more informed. I agree that it is a big concern. Very few patients so far have had just one procedure and no further treatment.

Thrombosis in the jugulars, for one example, is covered under insurance irrespective of this policy change. Would treatment for a thrombosis resulting from a prior experiemental procedure still be covered?

I agree with those who say we need to put together a response for the insurance companies that can be useful for those who need to appeal. It can be a sticky.

Johnnymac, what a long wait you've had, and to get caught up in this!! Very glad to hear that the procedure is going forward. Wishing your beautiful wife many improvements.
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Postby pklittle » Thu May 05, 2011 11:55 am

What a scarey thread title Cece! Since it sounds like it is confined to BCBS, why scare the b-gee-sus out of everyone?
People should not be encouraged to rush for treatment, under any circumstance.
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Postby Cece » Thu May 05, 2011 4:16 pm

www.thisisms.com/ftopicp-163676.html#163676

Time is of the essence, according to Dr. Sclafani, and he's talking about his other insured patients, not the BCBS ones....

I stand by my scary title, if you want to be treated under insurance, yesterday is better than today and today is better than tomorrow.
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Postby carollevin » Thu May 05, 2011 6:17 pm

As I posted previously I am one of the "lucky" people to have BCBS. I have a state rather than a national plan and hence I am hoping that maybe my state hasn't been affected yet--though know that is probably unlikely.

I think several great points were raised in this discussion so far.

First the idea of "rushing" into treatment may no longer be a great idea because if all the insurances and medicare start denying this in a month or a few months or whatever, what are all the patients going to do about follow up--as it seems many restenose once or even as many as 5x. What about follow ups and complications--will the insurance start denying that too.

Still I do understand the idea to "rush" now but then the patient must realize that they may have to pay for all or much of the follow up for years to come--and this could be tens upon tens of thousands.

Also someone mentioned the more we fight the insurances and post about this, the more they become aware of what they might not otherwise realize and it could backfire and actually end up causing more insurances to stop coverage....On the other hand, insurances need to understand that CCSVI is a SEPARATE diagnosis from MS and hence they have no right to deny CCSVI which has been used for other illnesses for decades. And of course people do need to fight for themselves, but ultimately I am not sure if letters and appeals will be enough. If insurances can site that no double-blind placebo controlled study has been done and that the FDA has not approved CCSVI specifically for MS, then insurances have a way to get out of paying. Yet it shouldn't be that way. For example if a person had cancer and CCSVI, they would not deny the CCSVI because the person had cancer.

I telephoned one of the well reputed CCSVI providers in my state today and left a message for their insurance person to discuss this. As of two months ago this person had told me BCBS was giving them no problem covering and they have been doing the procedure for PwMS for almost a year. So of course I want to see what he has to say. He may not even know himself yet because what I heard from another IR is that the policy change was made on April 12th but only went into effect May 3rd--2 days ago!.....So perhaps there are many IRs offices who aren't even aware yet in regard to the BCBS issues.

My family is currently discussing whether we can start of this route knowing that if I need multiple retreatments, meds, follow ups, etc that we could be talking about $50,000 or more in the years to come -- out of pocket.

This is truly a travesty.

Lastly, my understanding is that if a provider provides a service and accepts the insurance and the procedure is denied, then the provider has to "eat" the bill so to speak as per the terms of being an in-network provider. At least this is what was explained to me last year when I needed a surgery for a totally unrelated illness. They said that if the doctor is in-network and provides the service and writes "medically necessary" then the patient CAN NOT be held responsible--I was told this numerous times by BCBS reps, but again that was not in regard to CCSVI for MS.

Well of course I am anxious to see how this unfolds and also have been completely depressed since hearing his news yesterday.
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Postby 1eye » Thu May 05, 2011 6:17 pm

Yup. Them as wants to be in charge of what money goes where, why, and when, and don't like it when it moves without their say-so, are at it again. This procedure is now investigatory whatever the heck that is supposed to mean.

Everybody knows it doesn't always work. Everybody knows it can take several tries. Everybody knows sometimes even then it doesn't work.

What to do in the exception case should not determine the rule.

Angioplasty 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.

That is why your president pushed legislation that outlaws the practice of denying coverage based on pre-existing conditions. A diagnosis of 'MS', in this circumstance, is nothing but a pre-existing condition, an excuse to claw back money, at the expense of legitimate customers, policy-holders who get sick. Pure and simple.

The same situation exists in Canada. If the bean-counters at these insurance companies had any foresight they might see an entire generation of customers paying their premiums to someone smarter from now on, someone who is on their side, and wants a win-win scenario.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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