Extremely Restless

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Re: The same HMO?

Postby HarryZ » Mon Aug 14, 2006 9:39 am

Ronnie,

Ronnie wrote:Yuppers! Whily little devils, aren't they?


I could think of a few other descriptive words to describe HMO in this case but Arron wouldn't allow them to be printed!

I told my husband, "they probably just checked with their lawyers and decided the thirty days provision would be a way to stall and maybe get rid of some of us pesky varmints."


This is exactly what they are doing!! I would call them immediately and demand to speak to someone who is making the decision on this. Of course the person "won't be in at the moment" but insist that you speak to someone who can commit to you an answer within a set time period...and insist they give you a call back time period.

It's a lot of hassle but be persistent because these people hate those who are persistent. Unfortunately it's the only language they understand.

Good luck.

Harry
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Postby Arron » Mon Aug 14, 2006 11:00 am

that's outrageous. This is a fully-approved therapy for Multiple Sclerosis, under the indications outlined by the FDA. If your doctor feels that you are appropriate for this medication, his prescription (and perhaps a follow-up note stating medical necessity) should be all that is required. If not, a copy of correspondence to your state's insurance agency oversight department should help 'remedy' things.

There is also NOT an insignificant chance that perhaps this doctor is still entirely unaware of the Tysabri re-approval. You'd be amazed how little many doctors keep up with recent developments, though that's rather unacceptable for someone working actively in claims decisions.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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For Ronnie

Postby msladyinca » Mon Aug 14, 2006 3:40 pm

Hi all, I'm new here and I must say, I am very please with the Tysabri info on the opening page of this website. Some of you might remember me as I testified at the FDA AC hearing re: Tysabri on 3/7 via videotape. For those who did not see not see my videotaped testimony through the FDA webcast, you can view it on the homepage of http://www.mspatientsforchoice.org/, or you can read the published article I wrote for the Washington Legal Foundation (WLF-Legal Opinion Letter) re: Tysabri at: http://www.wlf.org/upload/051906robertsLOL.pdf.

Now for Ronnie, I'm appauled and disgusted at your insurance company denying you THE best MS medication in over a decade, as I am sure you are. But you sounded like a little lost lamb as to what you should do next, so this is what you need to do first: Since you have their Denial Letter, make several copies of it and hold on to the original. Next, you need to start the appeal process immediately according to your ins. plan's policy (call their member services dept or find your policy handbook).

If they are of no help and you are completely lost, for further assistance, you can contact http://www.patientadvocate.org/index.php for advice and assistance in the appeal if necessary. They have a toll free number on their homepage, and they are very knowledgeable and really nice too!

I hope the above is of assistance to you or anyone else having trouble with their ins. coverage for Tysabri.

My very best wishes to all of you... :)
Lauren

PS: If you want to know more about me prior to my double whammied relapse in June 05 that left me w/c bound, please see my homepage at: http://hometown.aol.com/lglbgl2003/myhomepage/profile.html
Last edited by msladyinca on Mon Aug 14, 2006 4:01 pm, edited 1 time in total.
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For Ronnie: A BIG PS to my message re: your insurance

Postby msladyinca » Mon Aug 14, 2006 3:55 pm

A friend of mine [an attorney that has been a patient advocate for Tysabri and who was instrumental in negotiating with the FDA to allow patients to testify before the FDA) contacted your insurance company and advised: "I just called and spoke with the medical director at Community First Health Plans, Dr. Dunkin, and he takes the position that Tysabri has not yet been shown to be adequately effective and safe to meet their criteria for insurance reimbursement. He claims that until they are satisfied that it meets their standards, they consider it experimental and investigational. I encourage others to call him – ask for Dr. Dunkin at 210-358-6050"

I would also encourage all here to call him, and Ronnie, I suggest you call the Patient Advocacy Foundation right away and get started with them. If my friend (indicated above) can't talk any sense into that a$$&*#@, errrrr I mean "gentleman", you need some serious help from PAV.
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Re: For Ronnie: A BIG PS to my message re: your insurance

Postby HarryZ » Mon Aug 14, 2006 4:30 pm

Dr. Dunkin, and he takes the position that Tysabri has not yet been shown to be adequately effective and safe to meet their criteria for insurance reimbursement. He claims that until they are satisfied that it meets their standards, they consider it experimental and investigational.


Now this is an interesting scenario. I won't argue with Dr. Dunkin's comment that they don't think that Tysabri to be adequately effective and safe. Those who know my feelings on Tysabri will understand my comment.

But since when does an insurance company decide what FDA approved medications they will insure? I'm by no means an expert when it comes to the law on this but if an insurance company states in their policy (and that's where you have to really read the fine print) that they will pay for FDA approved disease specific drugs, then there should be no question of their obligation to pay in the case we have been discussing.

When Prokarin first came out, our insurance company refused to pay Marg's claim on it. They told us Prokarin was an experimental drug. I told them that it was not but simply a compounded drug to which their policy stated was covered on Marg's policy.

I went to Health Canada and the Ontario College of Pharmacy and they both stated that Prokarin was a compounded drug. I brought this to the insurance company's attention and they finally relented.

I think what is important here is to read exactly what the insurance policy covers when it comes to a drug like Tysabri. And find out if it states in writing that they have the power to decide if a FDA approved drug meets their criteria or not.

Harry
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Postby euphoniaa » Mon Aug 14, 2006 4:46 pm

Okay, I can't find any links because BT is down, but... I've read several threads in the past couple of years that stated that insurance companies sometimes hold off covering new meds until they've been in use for a year or so. This info may be completely WRONG, of course.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Dr. Duncan

Postby msladyinca » Mon Aug 14, 2006 4:48 pm

Harry, you make a good point, but I believe the issue is the ins. co's critera is apparently above the FDA's, and I'm not sure that will hold water. I think Dr. Duncan sank his own ship with his 'flippant and arrogant' attitude and remarks...i.e., "He claims that until they are satisfied that it meets their standards, they consider it experimental and investigational."

Sorry, but Tysabri is not experimental and investigational.

Lauren
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P.S.

Postby euphoniaa » Mon Aug 14, 2006 5:00 pm

I also understood that some insurance companies don't always cover the CRAB meds. That's why, when I was first diagnosed, I had to do research to find out if they were covered by my insurance. Before I could pry the information out of them, I had read too many horror stories and decided against taking one of them.

We're always talking about how picky insurance companies are when it comes to covering meds. It's generally agreed that that's why our neuros (like mine) insist on putting "RRMS" in our records so they can keep all their treatment options open.

I'm officially listed as a relapsing/remitting MS patient who has no relapsing or remitting, no change on MRI, no enhancing lesions, is slowly progressing, and refuses meds -- per my neuro's reports.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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P.S.

Postby euphoniaa » Mon Aug 14, 2006 5:04 pm

Yikes! I'm trapped in another thread again and I can't get out! :) If I hit the "back button" it just keeps posting the same post.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Mon Aug 14, 2006 5:08 pm

Okay, I can't find any links because BT is down, but... I've read several threads in the past couple of years that stated that insurance companies sometimes hold off covering new meds until they've been in use for a year or so. This info may be completely WRONG, of course.


SEE? It's reposting my writing at random.

HELP!
:D
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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My Tysabri Odyssey

Postby Ronnie » Mon Aug 14, 2006 5:53 pm

Dear Amelia, Arron, Lauren, HarryZ, Euphoniaa, msladyinca, and anybody else out there:

Thank you so much everybody for your support! Yes, I started the appeals process--I filled out their dinky little Complaint form, and I sent it in to the Member Services office. I spoke with a lovely Customer Service rep named Raoul, who was very helpful, and told me I needed to send some supporting information. Since the cc: at the bottom of the letter listed both my neurologist, Dr. Ann Bass, as well as my PCP, Dr. Robert Bass (they are married), I copied the letter and printed out a couple of articles from Biogen/Elan which announced the FDA approval and described in detail the protocol and how the infusion personnel needed to be trained, and the TOUCH program and enrollment.

I then packed up everything, filled out ANOTHER copy of the complaint form, and went over to the Kinko's/FEDEX office and sent the deal over to Raoul in the Customer Services office by overnight (seventeen bucks, but worth it I warrant). I took copies to Dr. Robert Bass, Dr. Ann Bass, and to Don, the infusion nurse at Dr. Ann's office (I call him "the Infusion God" because he never bruises ANYONE). I offered to bake Don some oatmeal cookies when he returns from vacation on Wednesday.

The receptionist nurse at Dr. Ann Bass' office says that this situation is happening to many of the patients, and I assume she means to some on other insurance plans as well. This being Texas, people seem to have a much looser interpretation of laws in general, in my opinion, so I am not surprised. The nurse and I rolled our eyes and laughed ruefully.

I may call the Patient Advocacy Foundation, msladyinca, as you suggest, but it was after 4:30 pm by the time I finished my whirlwind tour, so I will rest for the evening now.

And Thank you, HarryZ, I know you don't trust the Tysabri, but I really value your support in my quest to get back on it! I respect your opinions as being reasoned and well thought out.

Well, we shall see what we shall see!
Take care everyone,
Ronnie
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Re: Dr. Duncan

Postby HarryZ » Mon Aug 14, 2006 8:45 pm

Lauren,
msladyinca wrote:Harry, you make a good point, but I believe the issue is the ins. co's critera is apparently above the FDA's, and I'm not sure that will hold water.


It will hold tons of water if somewhere in their policy statements they indicate that they have the ability to decide the effectiveness and value of a drug to their policy holders and whether they will cover it. This is the key and I would assume that most people would not know if this is indicated in their policy. What makes matters worse in this case is the absolutely ludicrous cost for Tysabri which Biogen raised by another 22% after getting it re-approved by the FDA.

I don't agree with this line of thinking because I don't like nor trust most insurance companies. They often will look for a reason not to pay the customer and give them a hard time along the way if the customer makes an appeal.

Harry
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Re: My Tysabri Odyssey

Postby HarryZ » Mon Aug 14, 2006 8:58 pm

Ronnie,

And Thank you, HarryZ, I know you don't trust the Tysabri, but I really value your support in my quest to get back on it! I respect your opinions as being reasoned and well thought out.


A Tysabri supporter I am not but if you have an insurance policy that covers the cost of an approved drug that has been prescribed by a doctor then I feel you are entitled to be covered. Unfortunately many insurance companies don't necessarily think this way as you have found out! And these guys are pretty clever when it comes to reducing their claim costs.

I really hope you win this appeal in the end and I'll be cheering in your corner. Good luck.

Harry
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Re: Dr. Duncan

Postby msladyinca » Mon Aug 14, 2006 8:59 pm

Harry...,

if somewhere in their policy statements they indicate that they have the ability to decide the effectiveness and value of a drug to their policy holders and whether they will cover it.


Again, another good point, and please note the following opinion from a different atty: "The general statute under Federal law that covers this is the ERISA statute. Under ERISA plans have the ability to craft their coverage in a manner to exclude certain drugs or type of drugs. A typical provision is that the plan will not cover "experimental" or "investigational" drugs. It would depend in the end on how the provision is defined in the plan documents. However, it seems utterly arbitary and capricious (which is the standard of review the court will use, it will have to find that plans interpretation is arbitrary and capricious before it will over turn the plan's discretaionayr powre to exclude) for a plan to deny coverage for a drug that (1) shows great efficacy, (2) for a condition with nothing else even close in treatment efficacy, and (3) which has been approved by the FDA, not just once, but twice.

I believe this can be lititaged and that the patient doing the litigation will win this case, and obtain an injunction forbidding the plan not to cover Tysabri.

In the end, again, it is contractual, and there is nothing absolutely forbidding the terms experimental and investigational to be defined more broadly, and to give the plan more discretion to exclude even FDA drugs, but I doubt this is the case, and therefore, coverage will be provided even if it takes litigation by a patient.

Further, it is my memory, as I have not worked with ERISA for about a decade, that if the patient sues, gets the injunction to stop the plan from denying coverage for Tysabri, that the plan will owe the patient his or her attorney's fees as well. Therefore, given the Plan an incentive not to arbitrarily and capriciously withhold coverage, say for a drug that is absolutely FDA approved and effective, in fact more effective than anything out there, because not only will the Plan lose, they will also have to pay attorney's fees for their attorneys and for the patient's attorneys as well. Still, they will be stubborn as they may find advantage in delaying coverage and happily eat the attorney's fees."

I detest litigation, but sometimes its good to have the law on the patient's side for a change! Yaaaaaaaaaaay! :D

Lauren
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Re: Dr. Duncan

Postby HarryZ » Tue Aug 15, 2006 7:09 am

Lauren,

It would depend in the end on how the provision is defined in the plan documents. However, it seems utterly arbitary and capricious


And this of course is where it gets very tricky in the legal world. You can bet that the insurance company will have this outlined in their general terms of the policy.....and "arbitrary and capricious" are two words that are part of the insurance company's world!!


for a plan to deny coverage for a drug that (1) shows great efficacy, (2) for a condition with nothing else even close in treatment efficacy, and (3) which has been approved by the FDA, not just once, but twice.


Now here is where the insurance company can make some points when it comes to Tysabri. A lot will depend on just how much time they want to "buy" before they make a final decision on the drug. You can be guaranteed that if they end up in court, they would parade their experts to the stand and pick apart the current efficacy on Tysabri. That's all they would have to do is show some reasonable doubt as to Tysabri's effectiveness and the fact that the drug got pulled due to safety concerns and hasn't been used very much outside the clinical setting would make this kind of easy. They could also point out that the FDA has mandated a very stringent monitoring program for Tysabri because of the concerns for PML and other infections that are very possible.

I've said many times in the past that Biogen's introduction of this drug into the marketplace has caused so many problems for MS patients and this just adds one more. Insurance companies (certainly not my favorite group of people) have the resources to fight this for a long period of time if they want to save some money. And with the cost of Tysabri, it looks like this is exactly what they may end up doing, much to the concern of MS patients everywhere.


Harry
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