New threshold?

My hematologist treated me with IVIG in July for a count of 22,000 (the week before it was 18,000). My insurance company denied the treatment saying I shouldn't be treated unless my count was under 20,000 and I was in danger. My hematologist now says I shouldn't be treated unless I fall UNDER 10,000 and am actively bleeding. He says ITPers seem to do just fine with lower counts.

When I was diagnosed in 2007, I was told I should be treated when I fell below 30,000.

I had Rituxan in 2009 and had counts from 50,000 to 80,000 until just recently. I don't feel safe in the teens. I have blood blisters in my mouth and some bruising but because I'm not uncontrollably bleeding from the eyes I can't get treated.

I'm still here, so I guess I need to put on my big-girl pants and get back to living life.

Does anyone else have trouble getting treated with counts in the teens?

Insurance companies are playing with our lives like puppets. My employer swapped insurance companies and today I was informed by our office manager that injections may not be covered by insurance depending what the injection is and what it is for. The doc is talking about another round of Rituxan. I recon we will see if it will be covered. By the way the previous insurance company only would pay for 1 round of Rituxan and then it would have to drop to dangerous levels(5000) or below before they would pay on any other treatment. Insurance companies, what a false since of help. Sorry for the negativity. Know where you are coming from. Best of luck, wishes and prayers.

Have you ever tried Promacta or another drug? I had IVIG when I went down to 18,000 years ago. Now that I'm on Promacta I don't worry. I'm at 120,000 and up.

The doc put me on the steroids then straight to Rituxan. it got up to 115,000 on the last treatment and it stayed there for 6-8 months, I go and get a count wed. and if it is low he suppose to let me know what he wants to do next. I'll keep that in mind if he says anything about surgery. I don't feel that confident about my spleen coming out, kinda want to keep it ya know. Thanks for the reply.

I was in a similar boat. I did Rituxin but doctor wanted me to spray on Nplate because my counts were so low. I actually could hear him yelling at the insurance company in his office while I was in treatment center. Well his yelling paid off, I got both. Sometimes you need a doc to fight for you!

I had issues with insurance during my second round of Rituxan. The day before the 4th treatment of the second round, I receiced a letter from the insurance stating that they were not going to cover the treatments!!! 3 appeals from the Dr/Hosp were sent with no change. Apparently another round of Rituxan is not with-in their treatment protocol for ITP. Who are they to decide what the proper treatment for me is!!!! I pay them to cover me when I need medical treatment!!!! I cannot choose to not pay my premium because it does not fall into our monthly budget!!! Had to pay for the last treatment which was almost $8,000!!!

I never had problems with insurance before this. Neither did my hematologist. He's been fighting with the insurance company for months but they won't budge. I think he's afraid to treat me now, fearing he will get in trouble with the hospital he's associated with (they administered the IVIG after the hematologist prescribed it.)

I would be ok with getting another treatment, like Promacta, but the insurance company isn't authorizing ANY treatment for me unless I'm under 10,000 and actively bleeding. Plus, since I got 5 years from my first Rituxan treatment I wanted to try it again before introducing a new medicine.

I've kept my spleen this whole time (since 2007) but am really considering having it removed.

Are others fine with counts in the teens?

There is no way that we could afford to pay for the treatments at these prices. We pay for the insurance so they need to pay for what we need, not what they want to pay for. I work for a dealership for Freightliner (class 8 trucks "big rigs"). There is a warranty called Select Warranty. They select the warranty they pay for. That is how I feel what our insurance is doing to us. What a roller coaster ride. Anger, depression, happiness, relief and let downs, I psycho evaluation might be next "ha ha". Got to go to work. Thanks ya'll.

thomas414 wrote: There is no way that we could afford to pay for the treatments at these prices. We pay for the insurance so they need to pay for what we need, not what they want to pay for.

I'll bet they do not have to worry about treatments not being covered!! My employer recently dropped BCBS and started their own local community health plan. So far so good. At least now if I have issues, I can talk to someone locally.

Interesting, my hematologist and I had a great discussion yesterday on this very subject.

Insurance companies are businesses. They are in business to make money.....period.
To think of them in any other way is just being wishful.
They will push for the least expensive treatments possible (steroids, Cellcept, Cyclosprine, etc) and fight the expensive ones (Rituxan, Promacta, Nplate, etc). It's a business. The whole point is to pay-out less money than people pay them.

To paraphrase Joe Dirt, "When UNICEF gets into the health insurance business, then maybe everything will be covered.'

Embrace it.....work with it.....things are just going to get worse in 2014......well, here in the USA anyway.

BTW: I don't like it either. I'd much rather take Promacta (what I used for 3 years with my previous insurance policy) again than the generic Cellcept I currently use. But the reality is that Cellcept only costs me $10 a month, does not require pre-authorization, jumping through months of BCBS hoops, and it gives me at least half the efficacy of Promacta.
One does what one must do. Life continues.



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I agree with the insurance company not having to worry. I would go as far as saying they don't cover their on employees. I hope the community health plan works for you and your fellow co workers.

It is amazing what the all mighty dollar will do to humanity. Say one thing and do almost the opposite with some suffering to boot. I agree with 2014 looking bad. I got a few questions: has anyone got tested for testosterone levels for the cause of ITP?? What about blood pressure from stress and meds.?? Anybody smoke and the possibility in change of cigs.?? Back problems??? Acid reflux anybody? I'm just looking for a common factor that might help us finding a better way to fight this or possible underlying cause that docs are overlooking.

I have low T and low Iron issues. I believe these low levels were caused by the Rituxan treatments.
Yes, the insurance company's are in business to make money, but they also work for me. I pay a monthly premium for them to cover me when I need medical treatment. As thomas414 stated, we pay for insurance, so they need to pay for what we need, not what they want to pay for. If the Dr and Patient agree on a treatment, then the insurance has no right to deny it. It is only going to get worse!!!