This post may be more venting than anything so apologies in advance.
I just had an other-worldy discussion with a case manager from my insurance company regarding my 12 year old son. He is currently wheelchair bound and under the care of a pediatric LLMD who is "out of network". I would be very happy to seek treatment from an "in network" doctor if I could find one, but I can't.
I asked what process I could follow to have an exception made to waive this doctor in network for benefit coverage purposes. I believe my decision to go outside was of medical necessity, not one of choice. Her response was that it was unlikely to happen, but I could certainly request an exception and go through an appeal process. Here's the rub. My case would be looked at on an individual basis. I asked if I could get access to statistics of other Lyme-related claims they've denied and she predictably responded that the information was confidential.
This must have come up before, but are there any well-coordinated efforts to approach the insurance establishment en masse rather than one at a time? Is there not grounds for a class-action suit in the future of Lyme treatment?
Like I said, forgive the venting. I'm sure this has been beat to death from many angles by people far more well informed than me. It's just that... y%h#$E@!!
Thanks - that felt good.
Posted by trails (Member # 1620) on :
my thoughts EXACTLY northstar! when I saw that 3kids was from RI, I immeditately thought --they have a law there that REQUIRES your insurance to pay for treatment, so it seems they should pay for the doc visits too??
Posted by Beverly (Member # 1271) on :
There isn't any info I can add.
I just want to wish you luck Mom! It makes me sick that you have to fight with the insurance company when your son is so sick.
Hang in there.
Posted by lymex5&counting (Member # 7202) on :
Actually Beverly this is DAD not Mom.
Dad,
I don't know who your insurance co is. But it depends on your policy.
Is it PPO?
Since there are only 2 pediatric LLMD's that I
know of I assume you are either traveling to PA
or CT. I know you live in RI, but is your ins from
RI? Alot of times the fact that they can't give
you the name of a specialist in a certain # of
miles can allow you to qualify for the waiver.
But again your policy has to allow it. Is the woman
you spoke to from the MSA dept (Medical Service
Advisory?) They are the one who usually makes the
decision.
Also if you are traveling do you know about Miracle Flights for kids?
Or the Roanld McDonald House?
Don't forget to write off all medical expenses not reimbursed by ins. Mileage, car rental, parking, tolls, lodging, etc. Keep your receipts and talk to your tax man.
lyme x 9
Posted by Beverly (Member # 1271) on :
Sorry..wish you both luck..Mom and Dad.
Posted by r3coolkids (Member # 10728) on :
Yes, this is Dad (but speaking for Mom too). We are in RI and traveling to Ct. about 2 hours or so each way. I guess I should be thankful it's not a longer trip. Insurance is a BCBS PPO in RI.
Thank you for 2 very good suggestions... asking about a referral within x miles, and keeping track of non-reimbursed expenses for tax purposes.
The person I spoke with was a "case manager" who seemed quite knowledgeable but clearly wasn't the decision maker.
I wish I had more time to follow this board and learn more, but we're so wrapped up in doctors, tests, PT, medications, insurance, our other kids, and our jobs that's it's almost overwhelming. But you all know that and I thank you for your support.
Posted by Tincup (Member # 5829) on :
I've posted about this in the past.. but I'll try again to get it down right... IF the brain will work.
VERY important to remember.
Your child has "CHRONIC" Lyme disease. CHRONIC!!!
IDSA guidelines.. AND THE DOCTORS WHO FOLLOW THEM.. the IDiot ducks... don't believe in "CHRONIC" Lyme disease... therefore, they don't treat it... and therefore you MUST have a specialist who treats it!
Sooooooooooooooooooooo...
You call the ducks they recommend you use. The first thing you say is.. "Do you treat people with "CHRONIC" Lyme disease."
The answer will be "no". They may have to "check" and call you back.. but it will be "no". DON'T get sucked into going there so the "duck can see you before answering questions". Stand your ground.
After you've made the calls... and keep record of them... you report back to your agent that you've contacted all their ducks and they don't treat "CHRONIC" Lyme disease. PERIOD!
Then they HAVE to find someone who does.. just like they would have to find someone to treat a heart problem, if that is what you had. They can't send you to a foot doctor to be treated for heart problems... and they can't send you to an ID duck if they don't treat "CHRONIC" Lyme.
This is a weird "loop hole" I figured out a while back. I've had folks try it and all so far were successful and were reimbursed... and were able to go to the doc of their choice because of it.
Good luck! And please share this with others so it may help them. OK?
Posted by Anneke (Member # 7939) on :
I have never been sue happy, but I think there is lots and lots of ground for class action lawsuits all across the country against doctors and insurance companies who refuse to treat this disease. There was a case a few months ago where a young man sued because his dr. refused to test for and treat his Lyme disease, and he won. I can't remember what state this was.
I sure hope the Attny. General investigation turns up lots of evidence. There is another organization that ought to be sued.
Theresa
Posted by Truthfinder (Member # 8512) on :
Great idea, Tinny!
But how do you get the "chronic Lyme Disease" diagnosis in the first place?
I think it is the IDSA that should be sued - class action style. They are responsible for the guidelines that ducks are following.
And perhaps we could throw in the CDC, the NIH, and maybe even the USDA for their lousy "containment procedures" over on Plum Island.
![[Big Grin]](biggrin.gif)