This is topic Insurance disapproval, Aetna, UnitedHealthCare in forum Medical Questions at LymeNet Flash.

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Posted by MichaelTampa (Member # 24868) on :
Just got disapproved for IV abx by Aetna, they have a lyme policy bulletin stating any IV abx beyond 2 months of treatment is experimental, not proven to be useful.

A few questions:

1 - Anybody else with Aetna run into this? Did you ever get through it and get it approved? I'd like to hear both the "yes" and "no" answers, whatever is out there, want a realistic look at what it's going to be like.

2 - Annual enrollment period at work will be coming up at work, I could switch to United Health Care. Anyone have experience with them? Are they better, worse, any idea?

3 - Any idea if switching will work, even if United Health Care is the same, simply because United Health Care won't have already paid for 2 months of IV abx? Not sure if they'd know or not, but haven't paid for it...
Posted by sutherngrl (Member # 16270) on :
Most ins companies will pay for only 28 days of IV's for LD. You are lucky if you get 2 months worth. Its much cheaper to treat with orals. Same outcome!
Posted by lou (Member # 81) on :
It is not the same outcome for everyone, especially with serious neuro issues.

Do a forum search for United Health and for Aetna. People post their insurance problems frequently. Have not heard good things about either of these companies. In fact, after the IDSA guidelines rubberstamp, many more insurance companies are reneging on their contracts.
Posted by sammy (Member # 13952) on :
I have UnitedHealthCare. They are awful. Worst insurance coverage I've ever had. They are constantly making my doctor submit prior authorizations for oral meds. They have limits on most oral meds. Once you meet that max for the time period they will not pay for anything else.

They also don't seem to respond to any of my doctors prior authorization attempts or even letters from my congressman. They continue to deny meds and I end up having to pay out of pocket. Again, I'm talking about orals here.

Aetna providing 2mo of IV coverage is generous and beyond the IDSA standards. You may want to stick with what you have.

I have also tried calling (started with regular customer service reps and worked my way up the manager chain) to try to find out how to get IV coverage. Apparently my plan does not cover "injectables". There are no exceptions. Medical necessity does not apply. I asked what would happen if I ended up in the hospital and needed IV's. The told me that they will not be covered ever. Scary.

Michael, before you switch to another insurance plan, no matter the name, always check the medical "certificate" of coverage. That will give you the details of what is covered on your individual plan. There are many variations under the big names like Anthem, UHC, Aetna. You employer is the one that decides what is covered and what is not, they may have a very stripped down plan to try to cut costs.
Posted by Lymetoo (Member # 743) on :
I would stick with Aetna!
Posted by Andie333 (Member # 7370) on :
Of the two, Aetna would get my vote, too.
Posted by Terminator (Member # 27328) on :
If you're getting 3 different IV abx with Aetna do you get all 3 covered for 2 months or only one of the 3 covered?

Do they cover all oral abx, as much and as long as is needed?

[ 09-21-2010, 06:04 PM: Message edited by: Terminator ]
Posted by MichaelTampa (Member # 24868) on :
This is employer provided coverage, and oral prescription drugs seem to be covered by a completely different organization, Express Scripts. Don't know if it is completely unlimited, but I have not run into too much of a problem with the oral abx or other oral drugs, they have always been covered. The one problem I did run into with the oral drugs is the fluconazole started paying 90% for a couple weeks, but then eventually started paying only 50%.
Posted by kimmie (Member # 25547) on :
I have united healthcare, they only paid for 4 weeks IV meds. Would not reimburse for LLMD appointments or anything.
Posted by INEBG (Member # 27690) on :
We had Aetna healthcare for a year and hated it. It was a big battle every time we turned around trying to get things covered. We now have Blue Cross/Blue Shield and are very happy so far with the coverage for Lyme and coinfection treatments. I'm still treating babesia so no IV yet; time will tell how we do when we get there.
Posted by hadlyme (Member # 6364) on :
I have UnitedHealthcare. They have paid for everything for me.

My LLMD is a provider, so I only pay my co pay when seeing him.

I've been on Abx for a year now with my LLMD and UHC. All has been paid for, even the last zith for 180 tabs with Medco/UHC rx service. (and I only paid 37.00 for the 180 250mg.)

It all depends on your company policy and maybe how the dr. codes and writes things up?

I had IV's my first treatment back in 2000 and Bluecross/shield paid for over 3 months of IV Rocephin and the home nurse once a week, and then paid for zith 500mg and mepron for a year after that.

Maybe ck on how they are coding things to the insurance companies???
Posted by Rumigirl (Member # 15091) on :
UHC and Oxford seem to be terrible now, although it all depends on the policy that you have (that is written up by your employer, if it's employer based).

They only cover 28 days of IV for LD now. So 2 months is generous.

And, as Sammy is experiencing, they are giving me (Oxford that is) trouble for almost every other oral med I fill! Strict Quantity

Limits, needing Prior Authorizations, etc., etc. And then the Prior Authorizations that are supposed to last a year, suddenly are taken away at 6 months with no warning. And various things aren't covered at all.

I am spending endless amounts of time all the time trying to get rx's filled and covered. Horrible.

It does depend a lot of the structure of the particular plan though. A friend has Oxford through a state plan for people with low incomes, and she had IV covered for months with no problem!

In general, Aetna is probably better than Oxford though. These constant battles with the insurance company are just unbelievably wearing. I can't believe what Sammy is going through. I'm afraid it will happen to me too Scary, scary!
Posted by Terminator (Member # 27328) on :
Does Aetna have a website where you can put your policy number and get exactly what is covered for various diagnosis codes? I would like to call them and ask but if I say lyme I fear they will put me on some kind of blacklist.

Or are the coverage decisions not as black and white as that?
Posted by Need Lots of Help (Member # 18603) on :
I had Aetna and they paid for 2 and 1/2 months of IV coverage. Then my doctor took me off of IVs, so I don't know when or if they would have denied me later. My daignosis was Bart and then Lyme. My 20% was still ridiculous, but I had already taken orals for a year.
Posted by Babbs (Member # 27887) on :
I am an RN of 20 years and currently working in the insurance industry. You always have the right to appeal the healthplan's decisions. Appeal, then take it to the next level of appeal.

Often it is very easy, as easy as calling the number they must supply and saying "I want to appeal this decision". However, if it is not a "covered benefit" then look for another type insurance carrier who does cover IV treatment.

Many insurance companies "policy" is to deny right away. They WILL deny if all the T's and I's are not in order.

Sometimes they just need more documentation.

It is worth a try, good luck.
Posted by Terminator (Member # 27328) on :
Anyone has had success filing an appeal? Lyme Time had an insurance issue for that a few years ago.
Posted by racer (Member # 30438) on :
I am wondering about this too - has anyone had success with an insurance appeal?

My insurance - UHC PPO, which I thought was pretty good (before Lyme) - has now denied month 2 of IV abx for my child (I did expect this).

They say they will do peer-to-peer review where our doctor (LLMD - in plan), will talk to one of their doctors to justify treatment. If they still deny, then we file appeal.

It's all new to us...
Posted by Razzle (Member # 30398) on :
I had UHC through an employer for 6 months (contract only lasted that long). Terrible ins. co. - even as a Secondary ins. co., they still did not pay even a fraction of what was billed to them. And then the phone number on my ins. card went bad (stopped working), and nobody at the ins. co. or at the place I worked had a clue how to contact a patient customer svc. rep. All I kept getting was the provider service center...

My Blue Shield plan is much, much better (individual, not through an employer), even though there are some deficiencies of least they pay on time, cover what they say they will cover, and I generally don't need to fight them for every little thing.
Posted by Neil M Martin (Member # 2357) on :
Three claims sent to United. Won two. Lost one.

As a Jr. High teacher 1992-1996 I had a great United policy. Then Lyme and jawbone infections disabled me. I lost my group plan but got an independent United policy, paying out of pocket.

I was grateful to have United but did not know oral pathology and tick borne diseases were killing me. No United doctor would have found them. After I was properly diagnosed by non plan physicians the plan went into deep denial.

My #1 claim offered evidence of my Lyme disease and jawbone pathology. United had orchestrated care denials for these conditions, and in the while had their doctors treat me for Guillain-Barre. The GBS treatments were quite costly, and offered no substantial benefit.

Lyme antibiotics and jaw surgeries DID help, but were non plan-approved. I claimed costs for IV antibiotics for Lyme. The plan & its arbitrator denied my Lyme disease, and said I could not prove my jaw pathology caused my paralysis. (!?)

So I lost that claim. I was too ill and weak to consider an appeal.

My #2 claim asked reimbursement for additional, denied jawbone surgery. I was too weak to claim Lyme disease treatments TOO. As anticipated, UNH denied my claim. I refused arbitration by United's paid lackey, asking instead that the Arizona Dept. of Insurance arbitrate. ADOI upheld
the plan but offered a hearing before a state administrative law judge.

The ALJ agreed with my allegations and wrote a favorable Decision. United paid. At that time United and AZ legislators were working to craft law to allow United to drop all independent policy holders. I was one of the thousands that were "dumped."

I filed my #3 claim after I enrolled in Social Security and Medicare. United said Medicare was primary: I had to file my claim there first. But then Medicare said United was primary.

Finally Medicare admitted it WAS primary. United then required a special form from Medicare, to say in effect that Medicare wuold not cover any of the conditions for which I had filed claim.

Lyme disease & jaw pathology are de jure covered by Medicare but de facto denied by HHS, IDSA and ADA so Medicare contract physicians do not like to deal with either Lyme or jawbone pathology.

There followed months of futility. Trying to deal with Medicare was much more difficult than dealing with United. I kept calling, writing letters, and finally a lady at Medicare took pity
and like magic the completed form arrived in the mail.

I forwarded the form to United, which promised to process my claim within 60 days. The deadline
passed, and I called United to asked after my claim. I was sent through hoops, hurtles and an in-house appeals labyrinth complete with more rabbit holes, wormholes and black holes.

For years United evaded my letters, phone calls
and in-person visits to their facilities. Now and then my claim would be acknowledged, only to disappear into an administrative shroud.

Finally I asked my state sentor to intervene. He called United, which admitted they had not done a good job handling my claim. United said my case was unusual and offered to pay me twice what I had originally asked. I accepted.

If IDSA-oriented, United did approve non-IV antibiotics for a long tiem. United also gave me 3 three-week doses of mepron. An artemesia annua product, Hepalin, proved to be more helpful for my Babesia, or otherwise I might have requested and received (?) more mepron from United. I want to give them credit where it is due.

I am currently trying to appeal a Lyme disease claim denied by a Medicare Advantage HMO. That is far more difficult than anything above, but I am even more concerned about the 20,000-page hope-and-change-healthcare law: doeas it allow a meaningful venue to appeal care denials?

Typically, Federal law trumps state law, so I fear un-named care reviewers (aka 'death squads')are above the law.

Take care.
Posted by TerryK (Member # 8552) on :
I have United Heakthcare. As others have said, coverage depends on your particular plan, especially if UHC is only administering a self insured plan for your employer. That said, I think service (or no service) in the case of UHC applies to all plans of a particular insurnace company.

I agree with Lou, some people need IV in order to get well. I've read that orals do not cross the Blood Brain Barrier as effectively as IV.

Sammy wrote:
They also don't seem to respond to any of my doctors prior authorization attempts or even letters from my congressman.

I had that problem with UHC as well. They kept insisting that they weren't recieving the paperwork from my doctor. I got the paperwork from my doctor's office and faxed a copy from my machine at home directly to the insurance company machine.

When they claimed not to have received it I told them that was OK because I could sit here all day sending faxes until they recieved it. I could sends 100's per day if needed. The next time I faxed the paperwork they got it and I've never had another problem with my doctor sending it directly to them. They always get them now. [Mad]

Sammy - it would be highly unusual for ALL IV meds to be excluded under a health plan especially if you ahve hospital coverage. I would ask them to send me a copy of the policy exclusion.

Under my UHC plan, the prescription drug plan does not cover ANY IV meds. They are all covered under the UHC main medical coverage. You have to talk to an entirely different company about IV meds.

rumi - quantity limitations can often be worked around with the right paperwork from your doctor. UHC did change their policy this year on Valtrex and now I can only get 2 weeks at a time and there is nothng I can do about it according to UHC. This allows the insurance company to make me pay $60 per month in co-pays instead of $30. [Mad]

I would appeal any and every denial. Let them know that you are not going away. I think they figure to cut their expenses considerably by making it hard. Many are too sick to fight back so they save money.

Posted by Rumigirl (Member # 15091) on :
Yes, Sammy, what Terry said is true. Under my Oxford plan (and Oxford and UHC are the same co now), NO IV's are covered under the Pharmacy benefit. However, they are covered under Major Medical. I really doubt that they could deny any and all IV's under Major Medical.

As Terry said, ask them to send you a copy of the exclusion in writing. And have Infuserve send the claims to your Major Medical portion. I assume that's where they do send it. And appeal six ways to Sunday, if they deny that.

And, Terry, I do appeal as many of the denials, Quantity Limits, etc. as possible. But it takes ENORMOUS amounts of time, as it is constant. And even with my dr's intervention and appeals, it doesn't always work. Grrrr!
Posted by chiquita incognita (Member # 30381) on :
I would openly accuse them of attempted murder, and go public with it. Show them down, and glare at them!!! Send them a print-out of a letter to the editor you wrote and blast them for their crime. Let them realize they stand to lose business, and "apologize" by paying for you...just so they squeak out of this criminal accusation! The buggers. They ought to be jailed.

For the rest, I just checked a book out of the library which had many helpful resources. I will re-read the pages about this and get back to you, stay tuned for another post. It's very good.

They suggested gathering facts such as emails and symptoms sent to docs, etc. to prove need.

They also mentioned that the insurance companies, in telling you what your medical needs are/are not, are "practicing medicine without a license." Hmmm, interesting one to go after them with!

The book had many social service resources too. I will get back to you as said and also give the title of the book. Don't want to disturb others who are asleep right now.
Posted by chiquita incognita (Member # 30381) on :
The book's name is:

"Coping with Lyme Disease, A Practical Guide to Dealing with Diagnosis and Treatment" by Denise Lang, with Kenneth Liegner, MD
An Owl Book, Heny Holt and Company

on page 205: "Depiste international and domestic research to the contrary, despite the CDC's emphatic statements that chronic Lyme disease is a serious condition and should be treated appropriately, and that CDC criteria for tracking lyme disease should not be used for any other purpose, most insurance companies have glommed onto CDC restrictive criteria as well asa set of medical practice guidelines concerning Lyme disease issued by the Infectious Diseases Society of America (IDSA).These guidelines assert that there is "no significant evidence that chronic lyme disease exists" and taht there is "no role for treatment with antibiotics beyond one or at most two months for any case of LYme disease".

Do we all fit into their box? Methinks not. Time to sue these unconscienable harm-doers? Methinks yes.

Here is a note of hope:
on page 213 of the book above:

"Equitable treatment from insurance companies is also the province of Families USA, located in Washington, DC. Formerly the Villers FOundation, it was founded in 1981 by Philippe Villers and his wife, Kate, to reform the health care system in the United States so that it assures universal access to care. Villers, who fled to escape Nazi persecution, grew up to become the creator of Computervision, a successful computer company. The foundation is his contribution to his adopted country. It provides grants and advocacy to those seeking redress in the health care arena. Under its Health Assistance Partnership, Families USA assistance to consumers ranges from education and mediating solutions to investigating complaints and actually representing consumers in hearings".

Contact information: 1334 G Street NW, Washington, DC 20005 202-737-6340

Wisely, the book also suggests appealing to the media for help. PUblicity can shame these wrongdoers down, forcing them to pay. If not, other people may step forward to help.

I knew someone who did that when one person needed an organ transplant and couldn't afford it. They had an article written up in the biggest local newspaper about organ transplants, the long waits in line, etc. followed by a one-sentence statement that "as far as the cost, we frankly don't know what we are going to do". They got about $5,000 in donations to help.

More resources listed in the book. MANY of them! HEre are a few:

American LYme Disease FOundation

Lyme Disease Foundation

Medscape AE recent research updated daily, posted on Pubmed, could be helpful as support in writing claims Medscape AE has info about how to get coverage in absence of insurance. Don't call with problems, see website

The book also mentions appealing to your State for help.

You could contact a case worker in your State Representative or Senator's office and ask them to help you.

YOu can also call the State's Insurance COmmission to get instructions for appealing on the State level.

Lots more resources and info in this book! THanks to my local library, toot toot trumpets blast woo hoo! It's good to know that there are people who care. We are not fighting this alone. Perhaps the libraries have more resources than any mentioned above. And the book has more resources, check it out.

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