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briarrose
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It's been a long time since I've posted for help but I'm definitely in a bad situation right now so if anyone has any information or has been through this process please HELP!

I've been getting Epogen injections for over 2 1/2 years and suddenly my insurance company has decided to change their criteria for injection. They don't care that I'm a POTS patient and the goal is to have a hematocrit of 50, their new criteria says your crit has to be below 37. I get symptomatic when I hit the low 40's, I'm currently below that! I'm in the process of filing an appeal but if anyone has documentation stating the positive effects of Epogen in POTS patients could you please send me a message.

Thx

Steph

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Steph,

Hello! I'm just writing to let you know that I read your post and that I'm so sorry you are having to go through this right now.

I've heard you explain many times how much Procrit has helped and I just can't believe that the one treatment that has helped you is the one youre not able to get right now.

I wish I could help,

Please let us know how things go,

Lisa

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I am sorry, it took me a long time to get procrit approved though mine, I had to appeal and I have to get it mailed it from the company they make us use. It there any way to ask for an appeal? I wish yo the best of luck, and sorry the insuracne company is casuing you problems.

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Hi Steph,

I am not familiar with American Insurances at all but I do work (clerical) in a hospital.

I am sure if the insurance company knew that you were saving them money by being on a medication that works vs. more trips to doctors/Er's......won't they want to continue the medication????

Just a thought.....

Maggs :)

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Thank you guys for your support.

Maggs that is one of the things that I'm going to put in my appeal letter. I have saved them a ton of money by staying out of the hospital and my primary care docs office. As expensive as the Epogen is the alternative is worse.

A few years ago before I went to see Dr. Grubb, I was so ill that I was nearly ready to have my mom put me in a nursing home. Now I feel like it's knocking at my back door again, I'm honestly scared but I will go down fighting.

This has been a tough battle. I didn't realize there was anything wrong since I've been getting this treatment for 2 1/2 years and then puff, suddenly my insurance company decides it's too expensive to pay for.

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How much longer do you have left before they stop paying?

Is it possible that you can make arrangements with your doctor to receive it in an ER??

I would think that after a couple of trips to the ER for the bloodwork and to receive a specific medication that the insurance company would rethink their decision...... :)

Good luck!! :)

Maggs

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My insurance company already stopped paying a few weeks ago, I'm already symptomatic and getting sicker. I am having horrible feet and hand cramps, nausea, horrible headaches, stomach problems, moody, cognative difficulty, etc.

The insurance company said that it changed it's criteria for ALL it's patients and they don't make exceptions. I tried to explain that the Epogen is to get the hematocrit to 50 or close to and they wouldn't listen.

I work in an ER so I know that won't give Epogen there.

I can't use the State Commission because my insurance company is self-funded. I would have to use a federal organization and that is only going to be somewhat helpful at best.

Has anyone seen any articles on the success of Epogen or Procrit for Dysautonomia or Orthostatic Hypotension?

This is a frustrating process and I'm truly scared for my very immediate future.

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steph -

i am SO sorry to hear about this. gggggggrrrrrrrrr. i do know someone else had to win the fight to keep procrit/epogen with medicare but obviously that's a bit different than private insurance. i have a few articles but with have to find them....i know you're in a time crunch but it may take me a few days (as unfortunately procrit hasn't been the miracle for me that it was for you). i think mine may speak more to autonomic failure though....not certain. but i will do my best to find them and let you know.

hang in there...i can only imagine how frustrated you must be.

:D melissa

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Hematocrit is not a relevant criterion for someone with POTS. You can have a normal or even somewhat high hematocrit and still have an abnormally low total red cell mass--BECAUSE YOU DON'T HAVE ENOUGH BLOOD PLASMA, EITHER!!!! Hematocrit is red cell volume as a percentage of the blood sample. If your total blood volume is decreased, but the decrease in red cell mass is proportional to the decrease in plasma volume, your hematocrit will be normal, even though you truly are anemic. Anemia really means a deficit of red blood cells. Hematocrit is just the easiest way of measuring it in a person WITH A NORMAL AUTONOMIC NERVOUS SYSTEM!!! A normal person with anemia would have a low hematocrit. A person with dysautonomia can have severe anemia with a normal hematocrit.

Here's an article that describes the blood volume and red cell mass deficits in a group of patients who had severe chronic fatigue syndrome (http://www.ncf-net.org/library/Bell.htm). One of the coauthors is the late, great David Streeten, who literally wrote the book about orthostatic hypotension.

Here's another way to think about it. If you want to know whether your car has enough crankcase oil in it, you use a dipstick. You can be a quart low even if the oil itself looks normal if you send it to a lab. A blood volume determination is like using a dipstick. Hematocrit is just looking at a sample. If you want to continue Epogen, you may have to have a blood volume determination. But they might not want to pay for that, either, and you might have to wait until you get seriously ill again before the results are dramatically abnormal enough to convince the "suits" at the insurance company that you need your medicine.

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Sorry for your troubles.

If your health plan is self-insured, the employer has the ability to make the final decision on medical appeals. The employer is the one that will pay the bills, so the insurance company sends appeals for the employers review. I see it all the time, since I am a benefit consultant. I would suggest that you enlist the help of your benefits department in human resources to see if they can look into the coverage of this plan. You may need to ask for the person in charge of benefits at the company. Believe me, most employers are very interested in managing costs. If you can show evidence that the company will spend more in hospital bills if they don't cover your drug, you may be able to convice them to cover this drug for you.

Most employers don't know what has been denied until an appeal goes is filed.

Best of Luck

Rhonda

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Thx again everyone!

I'm so scared & frustrated, I can't begin to tell you.

I'm not just taking this because of POTS. I'm also extremely Orthostatic hypotensive & without the Epogen my crit falls quick. When I started Epogen my hematocrit was 28. I had almost no Iron in my body & my saturation level was less than 4. This treatment has done so much for me, it's limited the fatigue, sob, ringing in the ears, minimized the nausea, cut way down on my headaches & migraines, etc . Now that has all started again.

I can honestly say I don't have it in me to fight back again. I'm not suicidal, I'm not depressed, I'm just being frankly honest with all of you. I've exhausted my resources and I don't have the fight in me this time around. If my crit falls really low and I get really ill, I'm planning on my mom putting me in a nursing home.

thx for all your support.

steph

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I'm so sorry to hear what you are going through. I can't imagine what it'd be like to have your life line pulled from you like that. I'm sure that as you continue to feel worse the thought of fighting is that much more overwhelming. Is there a way you can share this burden with a family member or even an attorney (or law student?) who could speed up the process? I know my dad has fought some battles for me when i felt too sick to even think of fighting. (He can be more intimidating and attention getting than me too.) You deserve this drug.

Kristen

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Kristen

I really have very few family members around. My mom isn't in the best health and can't possibly fight this battle with or for me. My kids are mostly too young and definitely inexperienced. I have an ex-boyfriend that is very persuasive but he doesn't really want to help and I would feel funny accepting help from him, I would rather die first (not literally but you get my drift, I?m a little prideful.) Many of my friends at work are really pissed that this is happening to me but they can't do much either. Unfortunately I'm flying mostly solo on this. The best I can hopeful is writing a really good appeal and it would be nice to have documentation backing me up but we all know how hard it is to get study documents.

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Hey Steph,

I found a new article from Vanderbilt that might help you. I didn't look at it too carefully, but the abstract looked promising. Let me know if you want me to send it to a different email address. I just used the yahoo one in your profile. :rolleyes:

Kristen

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  • 2 weeks later...

UPDATE -

After 4 of my doctor's wrote letters to the health plan, my primary called and talked to the director over there for 20 minutes and they still denied my claim for getting Epogen injections. I went to the administrator of my hospital and complained. I also told my employer that I was going to go to the media over this. The next day I got a call from my doctor's office and they said that there had been some horrible mistake and I could get my injections again.

Thx for your support and suggestions guys.

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Guest tearose

Oh thank goodness!

I was so upset and worried over this for you! If it works for you why the heck would they stop!!! WE know the consequences of backsliding and I am relieved you will not have to experience this!

Thank goodness you stuck with it and fought for yourself. Now put your feet up and take a deep sigh of relief!

thank you for the update!

best regards, tearose

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Congrats! :D:)

I am so happy for you. I know that procrit makes a big improvment for me. I am so happy you are able to get it agin! Way to go for not giving up, and pushing your doctors, insurance and company! :)

Amy

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