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Treatments & Insurance

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14 years 10 months ago #158 by tacmom
Treatments & Insurance was created by tacmom
My work went under a new insurance plan this month. Do you know if most insurance companies would consider Rituxan a "medically necessary" treatment? I was trying to look through my insurance book and prescription book and I don't see any of the conventional therapies for ITP listed except for Prednisone and Imuran. Does your dr usually make the call to get Rituxan preauthorized or do you have to do it? I am trying to get the process started so we can get this infusion started for Caitlin.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 10 months ago #160 by alisonp
Replied by alisonp on topic Re:Treatments & Insurance
Hi Pauline

Your posts about insurance make me feel grateful for the NHS - thank you!

Having said that , there are also a lot of drugs that we would find it difficult to get on the NHS, either because they haven't been approved by NICE (national drugs approval body) or because the local health authority hasn't got sufficient funds. So for example, my dad has a form of bone marrow cancer called myeloma. He gets treatment with a new and very expensive drug that seems to work really effectively for him, but a friend of his who lives about 100 miles away from him can't get that drug because his local health authority won't pay for it! So this is probably just as much of a lottery in the UK.

Hope it isn't too difficult for you to get Caitlin's treatment approved anyway and that she has some improvement from it.

Ali

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 10 months ago #162 by Sandi
Replied by Sandi on topic Re:Treatments & Insurance
Pauline:

It all depends on the insurance company and the type of policy you have. I had Health Assurance and was denied...they wouldn't change their minds. Then I got switched to BC/BS and they denied at first, but approved after appeal.

I would think that you could appeal and win based on the fact that Caitlin has gone through most treatments with little result.

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14 years 10 months ago #177 by tacmom
Replied by tacmom on topic Re:Treatments & Insurance
Sandi...thanks! My new insurance is BC/BS, but under a different division called TRS Activecare. I just talked to them on the phone and they said the dr has to fill out a predermination form and fax it and they will need to take time to review it. I have a feeling it won't be done this week. They said it took them two days to approve the IVIG last time and we had it done on the same day that they ordered it so that means it wasn't approved until two days later! We can't really use Nplate as a record of treatment since it was a study drug. So all we have to show for is the IVIG and Prednisone so hopefully they won't deny it. Can I ask how long it took between the time you submitted the request for this treatment until the time you appealed to get this done? I am sure Caitlin will be fine for a few more weeks, but I will just have to really keep a firm eye (and both hands) on her for the time being to keep her feet on the ground.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 10 months ago #178 by tigereyes
Replied by tigereyes on topic Re:Treatments & Insurance
I used to do auths for these treatments at my old job. If you call as a patient they will give you a determination in 24-48hrs. where as the dr office it takes a few days. The dr can request that the auth be made stat. And you will get a decision in 24 hrs. As for the IVIG, that is something they can retro to the dos. It wasnt something you could wait on. The key to getting the approval fast is to send all the info needed for the auth, like current platelet counts, failed treatments, even a letter of medical necessity would help. But if you call you get much farther and better help from the insurance company the the dr office alot of time you get an automated system or just a fax # to do the authorization where as the members get a live person. If there are any other questions let me know. Ive been doing authoizations for 5 yrs.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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14 years 10 months ago #187 by tacmom
Replied by tacmom on topic Re:Treatments & Insurance
I know the nurse already sent the info down to the preauthorization secretary. I don't know how long it will take to hear back from them. I was hoping to take care of this myself to get the ball rolling, but they won't move forward until they hear from the hospital. The nurse said she is aiming for Wednesday or Thursday to do the infusion so I hope it works out.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 10 months ago #190 by Sandi
Replied by Sandi on topic Re:Treatments & Insurance
I can't remember how long it took, Pauline. Sorry - it was a few years ago.

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14 years 10 months ago #253 by tacmom
Replied by tacmom on topic Re:Treatments & Insurance
Well it doesn't look like we will have it this week. Caitlin's dr really wants her to see the Rheumatologist before she starts the Rituximab because she doesn't want it to affect her overall plan of care. She doesn't see the Rheumatologist until Feb. 16th. I know that is only 3 weeks away, but in the meantime..."keep her feet on the ground". I almost want to say...YOU come keep her feet on the ground. She doesn't listen to me because she truly seems to be in denial that anything is wrong with her except for when she is feeling the effects of the treatments. Don't get me wrong...she isn't a problem pre-teen. Just a pre-teen that wants to do whatever she wants to do without restrictions when it comes to activities. I've told the doctor before that I truly think Caitlin has a Type A personality (daredevil) and has since the day she crawled out of her crib at 4 months old. (Then took off running by the time she was 9 months old!)

As far as her symptoms right now...she only has a few bruises and some petechaie inside her mouth. Oh, and I meant to ask the other day...is itching a side effect of Prednisone? She made her scalp bleed in several places earlier this week because her head kept itching so bad. I kept checking her over and over for lice, but didn't see anything. (She has been off since last Friday night.)

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 10 months ago #278 by Sandi
Replied by Sandi on topic Re:Treatments & Insurance
Ha - I had one of those children too - climbing out of the crib and up stairs at 4 months. We had to put the crib rail down and place a chair next to the crib so she could get out without falling to the floor. I know how they are. She's 26 now and still flitters around. No stopping them!

Prednisone generally doesn't make one itchy. It usually will calm down any allergies or hives, unless the person is allergic to it. I'm not sure how an allergic reaction to Prednisone would present.

Would the Rheumatologist be able to take her sooner if you called and explained the situation?

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14 years 10 months ago #285 by tacmom
Replied by tacmom on topic Re:Treatments & Insurance
Still flitters at 26!! Boy, I've got a long road ahead of me! My husband and I see her trying all sorts of skydiving activities and skiing down the black trails when she is older! One funny story...we went to Disney World when she was 5 and we were on the ride called "Thunder Mountain". Caitlin didn't think it was fast enough so she started saying "booooorrrriiinnng" and by the end of the ride, alot of the other riders were echoing what she said. It was hilarious! We even heard it on other rides throughout that same day!! My older daughter thought it was so scary, lol!

Just spoke with the doctor. She is not going to get Rituximab until after she sees the Rheumatologist Feb. 16th. She said she wants to consult with some of her colleagues at a conference tomorrow to see if there are any other treatments Caitlin should try before Rituximab. Personally, I don't want to go through a whole list of things. I want to do the next "big" step that has a possibility of putting her in remission. She's not a kid that is going to settle for music lessons or any slow activity like dance. She watches her sister in competitive dance and makes fun of her, with her leaps & jumps & slowly moving her arms in the air. (Bad, I know, but typical sister!) It is time for me to just take a deep breath and BE PATIENT and trust that the drs will do the right thing.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 10 months ago #290 by alisonp
Replied by alisonp on topic Re:Treatments & Insurance
Hi

I sympathise with the restriction of activity problems you are having. Dougie has been in trouble at school for playing footie at break this week - he has been very clearly told he was banned till his count recovers a bit, but gets told off every breaktime, and then still goes out and does it again the next time. I have had letters home from school every day this week, and I am not entirely sure I know what to do to stop him other than telling the teacher to keep him inside at break. His eldest brother Glenn clearly believes that he is invincible, and I wonder if Dougie has a similar approach to life. Glenn has been in hospital twice last year and A&E three times, because he has had accidents falling off his bike at the BMX track. One broken arm, two concussions and many, many cuts, bruises and lacerations later, he still has no sense. I am wondering how many times it will take!!! 2010 has been incident free so far, but I am not holding my breath!

So, I hope that Caitlin manages to stay safe until the middle of the month anyway. Can you bribe her in any way to keep those feet on the ground?

Ali :cheer:

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  • Sandi
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14 years 10 months ago #294 by Sandi
Replied by Sandi on topic Re:Treatments & Insurance
I don't blame you, Pauline. There comes a time when you just need that remission already. It gets old.

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14 years 10 months ago #306 by tacmom
Replied by tacmom on topic Re:Treatments & Insurance
Amen to that Sandi! I'm just at the point where I'm tired of all the drs appointments and it really makes it difficult to plan at work since I am a teacher. I have to update my substitute book every week so that the lessons are updated and my students aren't just being given "busy" work. (One of my pet peeves!) I truly love my job and I know I do make some kind of impact on their lives. Being a mom, of course, is my first priority though! Sometimes my students get upset when I take off so much. (Things would be so much easier if things only happened in the summer, but Caitlin's counts are ususually good during those months.)

Ali-I'm lucky that only one of my two girls is a daredevil, but it just so happens to be the one with ITP. My other daughter is very careful & listens very well. They are so much fun because they are so different from each other. (However...even as careful as my older daughter is, she has broken some bone in her body 5 times while Caitlin has only broken her wrist once.) I HATE those trips to the ER so I can definitely sympathize with you there!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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