Insurance question

PersonalTrainer
PersonalTrainer Member Posts: 21
edited June 2014 in Lymphedema

I'm hoping someone can help me with advice on insurance coverage for lymphedema garments.  I had a lumpectomy and SLN in July 2011, then radiation last fall.  Even though I only had 1 lymph node removed, I began to develop pain and a feeling of fluid buildup in my side.  I was diagnosed with lymphedema in my breast and side early in April.  At this time, I was also beginning to have a feeling of heaviness in my arm as well.  I began MLD therapy and responded very well. I was very lucky to have caught this early.

I was fitted and we ordered compression garments: 2 sleeves, 2 gloves (these are helpful when I lift weights and run), 2 gaunlets, 2 Bellisse bras, 2 swell spots and a Solaris Tribute night sleeve and cover.  The Aetna participating provider, checked my coverage twice before placing the order and was told everything would be covered.  I called myself several times because I was concerned about the expense of my needing custom garments (my arms are long apparently) , but couldn't get any real answers as the customer service people weren't very knowledgeable about specifics, but was told compression garments were covered under my plan.  The claim was finally submitted in May after I recieved everything.  I followed the claim on line through the portal we are given to use, and called customer service serveral times because the status said the were looking for medical documentation and it was under review.  Finally, the claim expired and was denied for lack of action by Aetna.  I called and protested this, so they sent it for reprocessing.  

Today the entire claim was denied due to lack of medical necessity.  I have been on the phone with three different customer service representatives today trying to figure out why.  They have now faxed their "Lymphedema Position Paper".  The funny part is that they approved and paid for a Flexitouch for me back in May after only about a week.  They also covered a Wearease compression camisole and a swell spot for underneath my arm, but this larger claim has been denied.

Of course I must appeal it, but my question is, does anyone have any advice for me after prior experiance with Aetna?

I'm reading their "position paper" and it seems they claim compression for anything other than an arm or leg is "experimental".  Does anyone have any good "peer reviewed" studies I can cite regarding compression for the trunk and breast?  I'm actually doing well with the swelling in those areas - as long as I don't try and wear a regular bra.  

My arm did get worse - it now swells in humid weather.  I've had a couple of days where I had to wear the tribute sleeve all day instead of only at night - which did really help.  They seem to be saying I need to have "intractible lymphedema".  Give me a break - nobody wants to wear these compression garments if they don't have to!  I'm a fitness instructor and personal trainer - it's very apparent I'm wearing a sleeve - not only is is hot and uncomfortable - I get a million questions about it all day and people tend to worry that I'm going to hurt myself.  

Anyway - my arm feels good as long as the weather cooperates and I wear the sleeve.  Elevating it does nothing - I need the compression.  So, how do I get my insurance company to cover compression?

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Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2012

    Insurance is an enigma - I have diagnosed stage I LE in my arm, mine paid for LE PT twice but will not cover sleeves and gauntlets, but did pay for a wig - go figure.  

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    Hello, PersonalTrainer, and welcome!

    Insurance is a nightmare.Tongue out That said, I'm not getting why they're not paying for the arm items at least, since that is their policy? It sounds from your list like the only items not covered would be the Bellisse bras and possibly the SwellSpots, yes?

    Since you have a denial already I'd suggest you contact Bob Weiss, the insurance Activist for the National Lymphedema Network. He helps with appeals after a denial, and does not charge for his services (because he's an angel, apparentlySmile). Reach him at LymphActivist [at] aol [dot] com 

    If he's traveling it'll take him a few days to answer, but his help is invaluable. Hopefully Tina will be along to explain the details of her recent successful appeal.

    Don't give up! And do please keep us posted,
    Binney

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  • PersonalTrainer
    PersonalTrainer Member Posts: 21
    edited August 2012

    Thank you, Binney.  No - I'm not giving up at all - we can't afford for me to give up. I'm going to appeal it and then appeal it at a State govenment level if need be.

    At this point I'm mostly just spitting angry.  I've called and emailed several times, before the denial, asking if there was anything I could do or send in to help with the processing of the claim - they kept telling me no and don't worry.  From the day I got my cancer diagnosis, I've been totally frustated by the lack of knowledge as to what's covered and what isn't at the insuance company.  I've been asking and asking about these sleeves mostly because I know I'm going to need them again and because I really do need more than two at once.  Because of my job I need to be washing them more often, but I can't get them clean and dry in time.  I kept being told there was no limit on the number of garments I could order; the provider was told the same thing.  Good thing I was waiting until this claim was processed to order anything more.  But, it's not as if both I and the participating provider who supplied me with the garments hasn't asked repeatedly about coverage.

    Today, the customer service representative actually told me that, while yes they did have a record of the provider calling twice to check my benefits for garments, probably the provider didn't tell them it was for lymphedema.  She seemed to think that garments would be covered, just not if they were for lymphedema.  The next rep told me that probably that was true as this may be excluded under my husband's employer's plan.  I asked where I could find this in the plan documents - no, she told me, we can't give those out - only the people who process the claims have access to that information - you have to wait until you send the claim in to find this information out.   Plus, everytime I ask anything in writing, I get a reply telling me to use the "Ask Ann" feature which is a "virtual assistant" on the website.  Okay - I've tried, but "Ann" tells me I need to ask customer service those questions.  

    Anyway - thank you for the contact information. I am going to send him an e-mail - and work on my appeal letter.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    I only have Medicare for insurance and they do not cover sleeves, garments, gloves period. Even if you have a medicare supplement, if Medicare doesn't pay for it, the supplement won't either.I think if congress would get their heads out of their rear ends and make Medicare pay for it as part of mandatory treatment, other insurances would have to as well. There is a link to contact your congresspeople change the laws regarding it.

    Here is the link: http://www.capwiz.com/lymphedematreatmentact/issues/alert/?alertid=61518776&PROCESS=Take+Action.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012
    Hi, PersonalTrainer - I am so sorry you are having trouble with your insurance co. I recognize the kind of runaround you are encountering. Don't let them blame the provider or confuse you about your policy coverage. I recommend contacting Mr. Weiss, as he handled my second level appeal and did so in a way that I never could have. He knows the documents you need to prove your insurance does cover these garments, and he will represent you and face an appeals committee (conference call) and show why these garments are not experimental (that's the excuse my insurance used) and how they serve as a prosthetic for a body system that is impaired. He also made sure ahead of time that at least one of the professionals on the committee was in a field appropriate to reviewing a LE-related case.




    Here's a link to the thread about my appeal, which has some good recommendations from Binney and Kira:




    http://community.breastcancer.org/forum/64/topic/774974?page=1#post_2617695




    Here is a link for info about Mr. Robert Weiss from the Step Up Speak Out site. Scroll down to the section on insurance appeals:




    http://www.stepup-speakout.org/AppealingForCare.htm




    Good luck, PersonalTrainer. You can win and help others in the process, as each case Mr. Weiss wins works to set a precedent for legislative change regarding LE coverage.




    Edited to add: I won my case at the second level and it took less than two months.
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  • PersonalTrainer
    PersonalTrainer Member Posts: 21
    edited August 2012

    So glad you won, Tina.  That is encouraging. 

    I did contact Mr. Weiss and he sent me some good information to use.  

    Yes - them trying to blame my husband's employer for the denial is nonsence.  Actually trying to tell me that there might be secret provisions to the plan that only the claims processers have access to is really outragious - the funny part is, it's a large company and we have a dedicated 800 number to use for customer service at Aetna.  You'd think these representatives would know the plan if they're giving out information on coverage as part of their job.  That was just a big fib because they really should have covered the claim - at least most of the items - if you look at the "clinical policy bulletin" they found to send me AFTER they denied my claim. 

    I'm working on my appeal letter now - and the provider is going to appeal as well.

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