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Discussion Starter · #1 ·
Two weeks ago my doctor informed me that we're at the end of drugs we can use to help me battle my lupus, the only thing left was the rituxan we had tried to get me on last November. Right now I am no longer on any lupus type medicine except for .04 methotrix (spelling, sorry) and sitting here waiting for another route to get me on the rituxan. My insurance which is Tricare for life( insurance from the retired military hubby) is denying me going on it stating it is unlabeled for lupus in the United States.

I felt like the air had been kicked out of me, how can insurance companies deny something that can be life saving to someone with a non ending illness. Their excuse to us, was if while on the Rituxan I should die, it could leave them open for a wrongful death suit from my husband or other family members. So as long as it is unlabeled for lupus they will continue to deny me.

I contacted my son's doctor in Oklahoma and was told they could get me on the Rituxen and get my insurance to pay, all I needed to do was move to Oklahoma again. My question is does anyone possibly have the answer to my one question no one else can answer, how can one state get your insurance to approve something it will not approve in another state.

Right now we are waiting for word from a place that might pay for the drug for me, the first three they contact turned us down because of my husband's income. My doctor told me to give him a few more days or a week to figure how one state can do this and another can't, he is think it might what is known as creative coding. I told him I am so for that, I told him to be as creative as he wanted as long as we could find something to make me feel better. And I told him bribery was not beneath me. :eek:

So I am simply wondering how Oklahoma can assure me they can get me on it with my insurance but yet South Carolina can not. I mean if it is unlabeled for lupus here in Charleston SC would it not be unlabeled for lupus in Oklahoma City, or does it change from state to state? Or am I simply living in a nightmare? :(
 

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What a horrible position to be in. Having to posible move so you can get the correct medical treatment. I am sending you lots of hugs (from Australia) I hope you get them and they ease your situation a little.

I have had rituxan twice now. I have been blessed that on both occasions I was given it on compasionate grounds and did not have to pay anything.

I really hope you get approval fot this great drug.

Best wishes
Peta:)
 

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Mystic,

I am so sorry that you have been denied again. I do want to clarify about the different State question. It is not actually the State Government that is approving or not. What can happen with off-label use of medications is that some centers are more willing to approve than other centers. While Rituxan is a very promising medication it is extremely expensive and there are significant risks in using it. I do know that Tri-care can be very difficult to deal with and are more strict than other insurance companies. I wonder how your sons doctor knows he could get it approved? Did he tell you why?

Hang in there,
Karen
 

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Discussion Starter · #4 ·
Yes, he answered the question for me, he said it was all in the coding of bills to the insurance company. It seems I have a illness that allows the use of rituxan, but my doctor here has never coded the insurance bills that way. My son's doctor would simply change the coding of the bill to allow me to summit a request for the rituxan. It seems my doctor here never coded me for my RA even though I have had the RA for almost 5 years, he coded all my insurance bills for lupus.

So I called my doctor here and asked to speak to the girl that takes care of his insurance billing and asked why I had never been coded in the billing for my RA since I could get the rituxan by having my RA.

She is now talking to my doctor and promises to get back to me and she told me the Doctor in Oklahoma was correct. So now I wait over something as silly and simple as meer coding of ones bills. Is this what they call creative billing?

One day I think I will understand this all. NOT! :eek:
 

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Mystic,

That is very frustrating. Your doctor should have known that and he may have but never told the billing department to add the code. Are there any other doctors in your area that you could change to if this doctor won't add the RA code? I have RA in addition to Lupus and scleroderma. It is the RA code that made it possible for me to take Enbrel without a fight.

Hang in there,
Karen
 

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Discussion Starter · #6 ·
Not sure, still sitting here waiting on some kind of return call to answer my questions. I have been looking into possibly finding a doctor here locally to see if he would code it for RA.

But in the mean time, I have the energy of a wet rag. I have managed to get my nights and days twisted once again. My stress level is through the roof.
I just want someone to call and say, ok we got it fixed now lets try to get you better, because in the mean time I am sitting here and the lupus is have a field day and full length parade in my body.

I try to stay up mentally and emotionally over this but sometimes when I am alone, sitting here I find myself fighting the tears, I try to keep that happy smile for family and friends but the whole time I just want to scream. I take a deep breath and tell myself as I do them, everything will work out fine all the time feeling the floor is being pulled out from under me.

But for now all I can do is wait....and hope....and pray.
 

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It sounds like you have made important progress and I hope you will soon get the chance to try it - and that it does the trick !

All the best
Clare
 

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Discussion Starter · #8 ·
another week goes by

Another week has gone by, and still no word on what is going to be done. I am truly beginning to feel like a mushroom, Stick me in a dark closet and feed me.......yeah that is how I feel.

I am having a emotional roller coaster of emotions. Mad because nobody is contacting me, scared because I am on no medicine to keep this disease in check,tearful simply because it would be nice if someone in that doctor's office would think even bad news is better than no news.

This monday will be a month since being off of the cellcept, I go from being tired all the time to being wide awake till 4 or 5 in the morning. The other day I slept for 16 hours. The pain sometimes is unbelievable, joints, muscles and just feeling like I was hit by a very big bus that backed up to see what he hit only to hit me again. I have no energy, sometimes I get up and within in an hour I find myself climbing back into bed and sleeping for long hours.

My poor husband, he calls from work and I am sleeping again. He has a day off and I am sleeping through it. Yet he never complains, he just keeps telling me to hang in there, someone will call and tell us the rituxan is a go.

One day I will come to understand why a insurance company thinks it is ok to withhold a drug that a person is in need of. I am sure one of my many doctors has coded my illness with the RA and my insurance company knows this is one of my many illnesses. And one day they will realize stress is not a good thing for a lupus patient and waiting on a approval is very very very STRESSFUL.

ok I have ranted on enough, time to head the bed seeing how late it is here or shall I say how early it is....my hubby is so going to have my tushie on a silver platter for this :p
 

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I will listen to your rant, I guess everyone is here for each other, cause nobody understands the same way, unless you are there going through the same stress.

I may not suffer the illness it self, but I suffer more seeing my child who I love suffer. One feels so helpless because we have no control what our bodies decide to do, or how it reacts to the drugs the doctors try to give some sort of normalsy. Its trial and error.

Sharon
 

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MysticRed,
I'm sorry the insurance company/Dr.s office are giving you the red tape choke hold. I was thinking,maybe, there is a clinical study or trial of Rituxan somewhere that you can get in on? Also, do not hesitate to contact your local congressman, give there office a call or write them a letter, maybe they will make a few calls on your behalf. I have had to do this before, and always had good results. In the meantime (((((((((hugs))))))) and prayers,
 

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The squeaky wheel gets oiled. Call the doctor's office back to see if there has been any progress. They may have totally forgotten about you. It wouldn't hurt to call the insurance company again and question them. Also if your insurance is through your husband's work get in touch with Human Resources. In my case that was the pressure that helped me get my third round.

Good luck,
Lazylegs
 

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Discussion Starter · #12 ·
:eek: Last night was a fun night for me, I now have a bladder infection along with UTI...can life get any better. I begged my doctor to CATH me... he laughed.
Little does he know I was dead serious, give me a bag till this is over please!!!!!!!!!!

Now I am waiting for his office to open, why you ask...well silly me told him I had pain meds for the pain came home and realized those were the ones that needed to be refilled.....They have a stupid rule here pain meds can not have refills without the doctor approving it. I am getting very sick of rules. I want to kick something anything just something.

Peta, I loved your idea and felt so silly...why did I not think of that..It was like a big bright light coming on and going HELLLLLO. So today I am going to be calling everyone even up to the White House if I have too. I am so tired of this is the rules...Rules are made to be broke....they need to break this one. I want to feel better, I want to wake up and not feel like a bus parked on me all night. I want to look at food and not rush to the bathroom, I want the red rashy mask gone from my face and I want my hair to stop falling out...Ok maybe I need to shorten my list of wants...but can we move the bus please............:eek:
 
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