insur sent me a disturbing letter TUE. long story short - my LLMD wrote me a 90 day Rx for IV Rocephin and BCBS denied it AFTER giving the pharmacy a 30 day verbal Pre-Auth!
i began Tx 10/29. the pharmacy delivers 7 PUSH syringes once a week. i am now finacially responsible for the past 17 days and the future. the pharmacy was kind enough to extend BCBS' price.. $100 per day.
my Dr will do a Peer to Peer chat with BCBS Duck but doesn't think it'll help based on previous experience. my only option is to pay and continue Tx. it burns me up that they can get away with this.
i'm appealing but what's the use.. the outcome will most likely be the same due to their b***s*** Guidelines (which i will post here shortly). their process is tedious and ridiculous.
for the record.. i have positive IFA's for Borrelia & Babesia and an abnormal brain SPECT (which prompted IV Rocephin Tx). my Western Blot IgM was considered negative altho
Bands 30, 41, 58 & 66 were POSITIVE and Band 31 was INDETERMINATE (one double-starred band is POS, the other double-starred Band is IND).
Western Blot IgG was also negative altho Band 18 was POSITIVE (3+), and Band 41 was POSITIVE. LD C6 was EQUIVOCAL.
if anyone has suggestions on where to go from here OR can provide me with pre-written material to submit with my appeal(s), please respond.. thanks! -- sonicbmx
----------------------------------------
here's are the highlights of the letter:
"Our Medical Advisor has reviewed your request as part of our utilization review program. Through this program, we evaluate
the medical necessity of care and the setting in which care is provided.
Our Peer Clinical Reviewer. JOHN GOLDENRING , MD . has determined: The request for IV Rocephin cannot be authorized
as medically necessary at this time because the medication use in this case is considered experimental/investigational under
Blue Cross of California Medical Policy Parenteral Antibiotics for the Treatment of Lyme Disease. The diagnosis of Lyme Disease
exposure has not been established by a positive Western Blot test. That test was negative. Use of antibiotics to treat a "post-
Lyme Disease syndrome" is also specifically considered investigational and unproven treatment under the above Health
Plan Policy. If there is further infOl'rnation related to this case, you may submit it for review.
Refer to your plan provision under exclusions for the benefit limitation for experimental and/or investigative treatment in the subscriber's plan materials.
This decision is based upon the member's specific circumstances and upon peer reviewed criteria including Medical
Policy. To receive a copy of the criteria free of charge or if your doctor would like to speak with the physician who reviewed your
case, please call 800-794-0838 during regular business hours."
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
This has got to be one of my all time worst pet peeves over this entire thing. Insurance companies are practicing medicine without a licence.
Why do we have doctors if the insurance company is going to tell us what we REALLY can or can't take? Something is so very wrong with this whole thing, but I guess I don't need to tell you that.
Hopefully your doctor can get things worked out on this one, but dang, I'd be livid too. We suffer enough with the non believing doctors and then to put insurance companies bucking us as well....it's just too much.
I'm sorry you are going through this.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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bettyg
Unregistered
posted
sonic, sory to read this, but welcome to the DENIED, EXPERIMENTAL, BS CLUB!
in the newbie package i sent you; did you copy it to your word processor as i suggested?
if yes, go to EDIT, FIND, **************************
type in TIMACA, and see what all pops up!
she wrote a lette to insurance company and backpaid around $20 - $30,000 !!! she WON her case!!
if you get something, and it's not it, click on FIND NEXT, and continue until you come across her link i added to my newbie package!
also, write them promptly asking them to send you the FREE COPY OF ENTIRE POLICIES THEY USED TO DENY YOU. i finally got mine 2-3 months after i requested it in WRTING.
also, knowing your background, let your fellow co-workers know what you/ALL OF US CHRONIC LYMIES have been going thru for years!!! especially after the ducks incredible 2006 lyme guidelines they TRASHED for those of us so sick! they did a huge injustice to all of us!
good luck, and stay mad as hell to continue pursuing every level you are entitiled to.
i used iowa's insurance commissiooner, market regulation bureau, and they got things i couldn't get out ouf bcbs!
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sonic, so sorry to hear this.
I really HATE insurance companies. I am going to have a party in the streets upon their demise, which I hope will be soon.
Now, you must take action.
Some states are very lucky in that if an infectious disease doc ratifies treatment, they have to cover it. Not so in California.
Please DO leave your line in, assuming it's already in. Keep in open by daily flushing.
Timaca has some good letters; contact her as suggested. She actually did win a case against them.
Write them ASAP.
Remind them that according to the CDC Guidelines, lyme disease is a CLINICAL DIAGNOSIS not dependent upon tests. You have abundant evidence of neurological lyme and numerous lyme-specific antibodies, in additional to evidence of neurological impairment on SPECT scan.
Advise them you intend to write Attorney General Blumenthal to complain and to add their names to his growing list of insurers who are clearly relying on IDSA Guidelines to refuse treatment to lyme patients.
Show a cc: on your letter to Blumenthal. See the sticky at the top of this Board for how to do that.
Remind them the CDC Guidelines were developed for geographical disease tracking purposes and NOT for the diagnosis of lyme disease.
Copy your letter to the state insurance commissioner.
Get REALLY angry. If you have a congressman, call him and complain.
I am REALLY angry right along with you. How dare they?
Do everything you can to proceed with treatment at whatever cost. You WILL win. They are counting heavily on you giving up. Don't.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sonic,
go to the insurance commissioner of your state!!! They have a website in every state and can help you- the state insurance board!!!
I was in your situation, appealed and got denied, as many of us have been.
But one woman in our local group (diagnosed MS originally) went to our state insurance board and raised heck and she WON her appeal- TWICE!!! 9She is the person I have alluded to who went on IV 3 times for one month each! but happy ending, is in full remission now!).
She won TWICE and the only difference was- she did NOT do it all by herself- she reached out to the experts at the insurance board and won!!! We were all amazed in group!!! Wow!!!
Another good site for insurance help is HARP.org run by an oncologist who got a JD (became a lawyer) because he was tired of his patients being shafted in their treatment because of insurance companies, specifically HMOs for him. He knows ALL about Lyme- his name is Harvey Frey and he is actually a family friend (if you write him from his site tell him Karen Leonards daughter Sarah told you to write hiM!)(that's me*)!
He helped the Lyme patients going after Kaiser as much as able- he won't be your lawyer but we can help you figure out what to do sometimes!!!
I am so sorry!!! It sucks, I know-
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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quote:Originally posted by sonicbmx: The diagnosis of Lyme Disease exposure has not been established by a positive Western Blot test. That test was negative.
Since when does a Lyme Western blot diagnose Lyme disease? It's a clinical diagnosis. You might want to send them the CDC info on diagnosis & their case definition. The CDC specifically states that lab tests are helpful but does not say that it's the end all for diagnosing Lyme.
Per the CDC:
"Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans." CDC Lyme Diagnosis
For surveillance purposes, the CDC requires a positive lab test in order to be counted as a reported case; but the CDC basically states that this criteria is not a standard they set for doctors to use in a clinical diagnosis.
"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis." CDC Case Definition
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It won't help you immediately, but send a copy of the letter to the Connecticut AG. See this thread
Make sure you get every appeal in within the proper time frame and keep copies of every communication you have with the company. Read your policy closely to understand the pre-authorization. See if it is a guarantee or if they leave themselves an out.
If this is employer paid insurance, get a copy of your Summary Plan Description (SPD). Whatever this says should be legally controlling. If they make any mistake in the SPD in your favor (like saying a pre-authorization is a guarantee you can rely on) then they have to follow that and you can take it to court.
Find out who is the last step in the appeal. If it is a self-funded employer plan, then your employer may have the final say in the appeal. That means that you might have more freedom to get them to choose to cover the treatment. If it's a small employer, then it is unlikely to be self-funded.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I was denied a nurse case manager on the phone, because I said that I felt strongly that I had Lyme.
I called an official with my state insurance board and complained for an hour.
I then called back, saying I'd just talked to the state insurance board--at length--and suddenly it was open-sessamee! I immediatly got a nurse case manager to handle my case.
Lyme went from fantasy to concrete, in short order!
This taught me that insurance companies really don't want patients to contact their state insurance board, for many reasons. Many of these boards have an outside appeals process--that insurance companies are afraid of.
I think that part of the reason some don't get their antibiotics is because they aren't aware of this path--and how to use it. Plan your strategy!
When I was finally prescribed Rocephen and biaxin, "formulary" turned me down--for both. An MD went to formulary in person for Rocephin. It was approved. Then this same MD went again to formulary in person for Biaxin. It was approved.
Same for each subsequent antibiotic. Each was (separately) approved.
So it wasn't--exactly--that they wouldn't pay, they just needed an MD familiar with Lyme to come in person. Then they could dot their "i's" and cross their "t's."
Now I'm with the same insurance company--different plan. My antibiotics are approved after my LLMD argues enough with them, by phone.
If it were me, I'd continue to take the Rocephen--and worry about the bills later. Your health comes first. And that shores-up your legal case.
Some insurance companies think they have a license to practice medicine. It gives them power. Stomp on their balloon!
Or, you might try this: call and ask for a nurse case manager (unless you have one, and if so, have they been involved in this? Ask your nurse: Who in your company is aware of the devastating effects of Lyme disease--who is not an infectious disease doctor? Maybe you'll get another nurse. Maybe an MD with administration. Those leads could be important.
My real trouble was before that, with the VA: it is their unwritten nationwide policy that they do not properly diagnose nor properly treat Lyme. The state said I couldn't apply for Medicaid because I could go to the VA. But I won Medicaid. Strategy!
Be a pain in the neck--and let 'em know it's gonna cost 'em, so they may as well just approve it now. Sometimes people do things just to get you out of their hair.
Many Lyme patients and their families have won their badges of courage. You can't see these badges unless they tell you about them.
I think we have to demand in the elections that candidates FULLY realize what is going on.
Take care. You are fuming and I hear you. Go ahead and fume. Know that there are others, too.
SAG called this morning to tell me they reviewed my case and WILL PAY for 28 days of Rocephin & Home Care afterall. there was no mention of BCBS (hmmm..).
guess i yelled at all the right people. i blew up their fax last night too.. sent 50 pgs of ILADS Guidelines and Burrassco Protocol.
also sent an email with the 3 videos posted by Soleilpie (thank you!).. not sure if this stuff helped but it certainly didn't hurt.
meanwhile.. my Dr did Peer to Peer with BCBS Duck and it was denied b/c my case was in the appeals process.
perhaps the lessen with Peer to Peer is to have it PRIOR to the appeal. my appeal was like no other.. all i did was yell at people.
my war continues next week for days 29-90 as ordered by my Dr. i got my Brain SPECT results today.. i'm no Dr but it looks
like there's enough to warrant the distance. wish me luck! -- sonicbmx
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
in my quest to get days 29-90 (and beyond if necessary) paid by insur.. what do you suggest i have my Dr include in the detailed report mentioned below?
SAG sent me a letter.. apparently they overruled Bluecross' decision and are in charge at the moment. BCBS tells me today
that SAG is an ISO Client, and what they say goes for now. BCBS will get involved again if SAG denies the add'l days, if that's the
case, i want them on the same page so i don't have to start from scratch. -- sonicbmx
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I was thinking about insurance and IV on my way to my LLMD yesterday. Just thinking what I would do if I needed Rocephin and was denied.
I'm wondering if it would help to do a cost benefit analysis for the company. Basically, show the insurance company how much many has been spent on your health care and make the argument that if the rocephin works, it will be an investment in reducing the other costs.
Without the rocephin, you would be forced to continue to treat the symptoms which result in X number of drugs, X number of different physicians, X number of doctor visits, etc. I would get back claims, often you can get these online, to actually put in dollar amounts of how much the insurance is paying.
I don't know if I would recommend this if you are purchasing individual insurance. I'm sure they would already be looking at that data anyway, but you probably wouldn't want to do their work in making an argument of why they need to get you off their plan or increase your premiums.
In my case, I would talk about my myofascial pain syndrome, my autonomic neuropathy, my gi symptoms, and my motor tics and list all the medications I have to take for those, the amount of doctors visits, physical therapy, mris and other diagnostic tests.
A warning, I would not list anything that could be considered experimental. You don't want to give the insurance company the idea of going back and rescinding coverage for something they covered. So I wouldn't mention all the supplements my environmental medicine specialist has me on. I'd just list the number of visits with him to deal with my neuropathy.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh yeah, gotta love BC/BS.
they sent me a letter informing me because of all my medical tests and expenses they were putting me in a "high risk" category and all charges and expenses would be reviewed beforehand.
this po'd me royally...i pay a lot of money for that insurance and they do this to me???
grrrrr, i wish they'd get lyme!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Sonic,
Is SAG the Guild? If yes, then this is probably a Taft-Hartley fund that is managed by the guild. I've got some more advice.
1. Find out who the Plan Administrator is. I would contact the health and welfare fund at SAG to ask this, or look in your summary plan description to see who it lists as plan administrator.
2. Look in your summary plan description to see who has the final say on claims appeals. If it is SAG, or the SAG health and welfare fund, then I think you have a different angle.
3. If SAG is the administrator and has the final decision on appeals, then you can make an argument based on their fiduciary responsibility to the members of the plan. This is assuming it is a self-funded plan, which means SAG actually pays the claims and BC/BS just administers.
Feel free to email me if you want to discuss this further. It's related to my work and schooling.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
isn't it wonderful how our various "jobs" experience relates to various things that HELP one another here on the board as we struggle along our lyme pathway? !!!!
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posted
my bad.. i confused everyone. SAG is the Screen Actors Guild. when i refer to SAG i'm referring to SAGph.. the "ph" stands for Pension & Health. i'll add ph form now on.
SAG & SAGph are 2 separate entities but tied at the hip. they pay the claims and BCBS is the admin.
SAG members are eligible for insurance thru SAGph if we meet the minimum earnings requirement each year. there are 2 plans and each has its own earnings requirement.
since 2003, all SAG members MUST pay a premium regardless of their income level (applies to Brad Pitt too). those who earn more pay less, those who earn less pay more.
premiums were established in 2003.. prior to that there were none (but you had to earn at least $7.5K to be eligible.. which is VERY difficult to do as a performer). the min requirement has nearly doubled since then and more members are left uninsured.
anyhow.. i'm certain i can't get dropped because i am SAG member and we are automatically accepted as long as we meet the minimum earnings requirements.
now i'm confused! -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
BC/BS is the third party administrator, but SAGph is most likely the Plan Administrator for ERISA purposes. Plan Administrator is different from Third Party Administrator or Claims Administrator.
The Plan Administrator is basically the entity in charge.
Both SAGph and BC/BS probably have fiduciary duties to the members of the plan. But whoever makes the final appeal decision is the most important in your mind right now. That is likely SAGph, because it is usually the health fund when it is a self-funded plan. (If SAGph pays the claims, it is self-funded).
I think you might have a better chance with SAGph than with BC/BS anyway. The main point is to show that it is in the best financial interest of the fund to pay for this treatment.
That, of course, in addition to the argument that this is not in fact experimental treatment.
Is pain one of your main symptoms? If so, the recent Columbia study showed continued reduction in pain from IV Rocephin. However, the fatigue returned.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
my BRAIN is my biggest problem and has been since Nov06. none of my other symptoms are as big a problem as they used to be since starting oral Abx in late SEP.
i think my most valuable tools are the SPECT scans but as far as i know, only Dr F can verify if the damage is indicative of Lyme.
i'd love to pay him a visit while i'm back east but i've been unable to speak to anyone and they haven't returned my calls.
any other suggestions? -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
the Pharm that was supplying Rocephin discharged me without explanation 14 days into treatment.
i flew to Canada (Montreal) and saw a Dr for $100 CAD. he wrote me a 90 day Rx for Rocephin (based on US Rx and my illness).
i went to a Pharm next door and picked up 2 Rocephin vials. all of this took about 1 hour. no fuss, no hassle.. just service. they were also willing to ship to the US.
the went to a different Pharm the next day and picked up a pre-filled syringe of Rocephin (2g Brand). again, no fuss/hassle.
i'm back in the States now (PA/NJ) and the new US Pharm i signed up with sent me generic (Ceftriaxone) altho they knew i didn't
accept generic meds and my Dr ordered BRAND ONLY (which insur agreed to pay for 28 days). i don't get it!
i'm fed up and not sure what to do now.. any suggestions? -- sonicbmx
ps - i don't know why this post became so wide.
-------------------- "The hell with Drs.. we have each other!" My story began here:
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