My daughter has had lyme for 11 years and neuro-lyme for 3+ years. Her LLMD prescribed IV Rocephin for her but Blue Cross Blue Shield of Massachusetts had denied it.
Their Lyme treatment policy states that a patient must have a positive ELISA and a positive Immuniblot test before receiving 28 days of IV Rocephin.
Supposedly this policy went into affect in March of this year. It blows my mind that this is legal for them to do since it leaves many people to only get sicker.
The LLMD's office said that it's nearly impossible for a patient with long-term lyme disease to show positive on these tests.
Has anyone else had this problem with BCBS of MA?
Has anyone gotten the IV Rocephin after appeal?
What are my options to get my daughter's treatment covered?
The LLMD said there is much clinical evidence that my daughter has lyme and co's and that the insurance company should absolutely pay for her treatment. ...But they won't!
Thanks, Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
| IP: Logged |
posted
If I had a positive ELISA and blot through Igenex, does this count? Starting Rocephin real soon and have BCBS.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
I'm not sure if the Igenex tests count in this case. The ELISA and Immuniblot tests that were to be done at the LLMD's office were not Igenex.
Posts: 80 | From Massachusetts | Registered: Feb 2008
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I had a problem with BC/BS in Pa. They paid for 28 days, but refused further IVs that my LLMD wanted me to have. We went through all kinds of appeals including contacting Senator Arlen Spectors office for help to no avail.
I was able to get the Rocephin through the needy meds program and then had to buy all the other supplys that i needed. Don't know if they still have the program, but it's worth a try.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
They refuse to pay for my son's blood work with Igenex and most of his treatments as well. I have to pay out of pocket for everything and have had to for years.
Since I don't want to waste energy fighting with them as I need it to care for him, I work around BCBS and leave them out of the loop whenever possible- unless I know they will pay or have a pretty good idea that they will pay. They fight everything, don't pay for much and if they pay at all they use a fine tooth comb and take their sweet time. (anything to do with Lyme or a Dr familiar to them with regard to Lyme sends up a red flag to them)
I don't know how to make them give you what you need. Doctor intervention doesn't do much either.
If you can pay for it even by credit card and leave them out of the loop, add your Igenex blood work and your other medical expenses (every little one) to your Schedule A deductions on your federal return next year. That is what I have to do and always am over the 7.5% needed. I have never had a problem getting the IRS to accept it either. Add any other documentation you feel gives weight to your math. Even though we could use the money up front, at least he gets the care.
If there is another way, I would love to know too!
Posts: 89 | From NC | Registered: Jun 2008
| IP: Logged |
WildCondor
Unregistered
posted
Don't you love how insurance companies actually have the power to dictate a patient's care! This crap should be illegal! It's a disgrace to America.
IP: Logged |
posted
There's a whole chapter on this sort of thing in Cure Unknown involving BCBS NY in the early 2000's. I don't know if things have changed since then in BCBS of NY, but it might be worth a look for comparison....maybe if you could show BCBS NY has a different policy or something.
But, in the book, the poor patient went through years of awfulness trying to be on Rocephin. Eventually, someone in her family "forgot" to pay the premium and she landed on Medicaid, which didn't work out much better. Her MD had meticulous documentation of her lyme and documented her improvement while on Rocephin. It appeared to be an awful situation for all involved. But, for them, the appeal process didn't work at all.
Sorry, to be a downer. If at all possible, I'd try to find a way to pay for this pending the appeal.
Do the MA insurance requirements help you out at all?
Posts: 252 | From New York | Registered: Apr 2010
| IP: Logged |
posted
``The Constitution of this Republic should make special provision for medical freedom. To restrict the art of healing to one class will constitute the Bastille of medical science. All such laws are un-American and despotic.''
``Unless we put medical freedom into the constitution the time will come when medicine will organize into an undercover dictatorship and force people who wish doctors and treatment of their own choice to submit to only what the dictating outfit offers.''
- Dr. Benjamin Rush (a founding father)
Unfortunately, it looks like he was right.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Wow that's something else about Dr. Rush - that was back in the 1790's....
I haven't had insurance for about 10 years now... It didn't help when I had it so I figured it couldn't be any worse to discontinue it.
Who knows what going to happen when all of this is nationalized.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
I have considered myself extremely blessed. I live in NY and have BCBS. I have been on rocephin since Aug 09. They are still paying for the rocephin and supplies, but just this week are denying anymore nursing for bandage changes.
I will be stopping and going on a toxin removal regimen. First, I think your LD plays an important part in getting what you need from ins., plus I was CDC positive, and can't help but wonder if that played a part.
I have never yet heard of anyone else being covered this long. Anybody?
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
posted
Insurance co's take money from subscribers, use that money to in essence bribe legislators, create mandatory self-insurance (in Mass) and for all in 2014 and then deny claims to suit there desired quarterly earnings. Yeah I would say that is a flawed system. That's one reason I do not and will not live in MA. and will do everything I can to circumvent mandatory participation in any such plan, period.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Try appealing. If you do a search there is info on it. ANd CALDA has an insurance issue of Lyme Times that you can order online that has great info.
Another thing that often works (not guaranteed though) is to buy your IV meds and supplies, from Infuserve in FL or wherever, then submit the claim to insurance under medical, and they often pay. I don't know if it works for BCBS or not.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Definitely appeal. This will take some work on your part, but my appeals have been successful. Remember lyme disease is a clinical diagnosis. I believe this is stated on the CDC website. You need to gather evidence to the contrary of what your BCBS defines as lyme disease and submit the appeal.
In my case, I have always appealed any denial and have always won. You must be persistent. Hopefully you will eventually wear them down and they'll pay.
Good Luck.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's too bad that we have to spend our lives fighting insurance companies to get proper medications. It's wrong. We should be focused on fighting our illness.
I'm not taking abx, so it's not a big issue to me. I just think it's wrong to make people who are ill have to fight for what we should be entitled to.
The whole situation is unethical & vile.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
No, you were not sold a bill of goods. In fact, BCBS is one of the best insurances you can have in MA.
That being said, it is good for a lot of things but Lyme treatment, testing etc is not good with them. Sometimes doctors can get around it though; it depends sometimes on how they write things up etc. If they can recode it or rewrite the claim and then resubmit it to BC, that sometimes does work since Lyme patients have many symptoms and they are treated symptomatically- for ex: EEGs, MRI, CT scans and many other blood tests are not usually a problem at all. Seeing a specialist w/ PCP okay is no problem; hospitalizations and ER visits etc. are usually pretty good.
It just depends on what it is, how the claim is written/ resubmitted etc and whether or not it mentions Lyme...
I am sure that eventually they will be forced to cover things for Lyme. They do cover things now that years ago they would fight tooth and nail.
Posts: 89 | From NC | Registered: Jun 2008
| IP: Logged |
My son had a recent episode of vasovagal syncope and they had to run all kinds of tests etc. The symptoms are actually due to Lyme according to his old PCP, but his vasovagal diagnosis came before the Lyme diagnosis so that is all covered...
See if the doctors can work within that kind of framework for you.
Posts: 89 | From NC | Registered: Jun 2008
| IP: Logged |
I understand what you're saying about BCBS covering other illnesses or conditions but the illness my daughter has is chronic lyme disease...and they refuse to cover it. We're paying for the Rocephin out-of-pocket but it's a real stretch for us.
As we all know, if she had any other disease but lyme she would have much better care and coverage.
Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
| IP: Logged |
posted
i'm in the same boat right now. my insurance company is being sold (healthnet)to unitedhealthcare. they told me rocephin was unlimited when i chose the plan. now i find out they review your medical records every 4 weeks to preapprove the drug. guess what - they denied me! i have a dual diagnosis of late stage neuro lyme and als and they still won't pay! that's a death sentence for me. i plan to pay out of pocket at infuserve amd my doctor will maintain the PIC line once a week. It will cost me about $1200 a month but its my only chance. you are not alone!!!
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is a link to Insurance Issues.
Look at the bottom of the page for a sample letter and other ideas.
Appeal, appeal, appeal.
Try contacting your local Congressional office and go to your Attorney General for assistance too.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic