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   I need some help or wisdom, Please! (Multiple Sclerosis board)

17th January 2008
Please bear with me, this is may be a bit long and I'm panicking.

I got a call today from the Avonex pharmacy saying that they can't ship my meds to me this week as planned unless I pay $1856.65. I told them what they already knew--I have a 3,000.00 medical deductible and a $250.00 pharmacy deductible. They were as confused as I was. They told me to call my insurance company to see what's going on.

The insurance company told me that for 2008, my Group decided to make my pharmacy deductible part of my medical deductible.

Now I have to tell you I am the Benefits Administrator at my work. I work for a non-profit that gets most of its funding from a major national charity, which I won't name. But I can guarantee that all of you have heard of this charity, and you probably give them money. I'm pretty sure it's the second biggest charity in the country. They are, in effect, my employer, and it's their name on my insurance card. I attended the big benefits meeting we had in October, when they told us about our 2008 insurance. My plan had virtually no changes. I have this in writing in my office.

At my previous job, I did medical billing. I also went to school for this, and I'm a certified CPT and ICD-9 medical coder and a certified Medical Compliance Officer. So I know a thing or two about insurance.

I called the pharmacy back and told them what the insurance company said. They were not happy. They told me that my insurance company told them that I didn't owe on my deductible, that the $1856.65 was coinsurance. I have no coinsurance. The pharmacy said that the insurance company probably messed something up, so I called them again.

The insurance company said again that it was my deductible, and that it was my Group (the great charity) who made this change. I asked them if the Group could make this change just for me and not for my coworkers--they said yes, they can do whatever they want. Knowing how insurance companies operate, I don't doubt this. I never recieved anything from my insurance company in writing about this, I assure you!

Because of my high deductible, I also have a health savings account, with a little over $1,000.00 in it right now. As you all very well know, MS is expensive, so my health savings account is drained. I can probably, with difficulty, manage to come up with the rest of it--but I don't have a lot of time. I have three shots left, one of which I take tomorrow. I'm facing the possibility of going a few weeks without my meds.

To make matters worse, I think I may be having an attack. Last weekend I got so depressed that I couldn't even tell you guys about it. I basically sat and cried all weekend. I had a deep sense that something was wrong.

This morning in the shower, every drop of water felt like fire. My skin hurt when I put my clothes on. My joints ache. I feel like I weigh 800 pounds and my left leg is all pins and needles.

Today for my staff I planned a Disability Awareness Training. My staff are all therapists so I plan several trainings for them a year. Ironically, after I introduced the presenter, I bent down to pick up a paper and I had the electric shock sensation that goes from my neck down my spine to my toes, which is the symptom that initiated my getting diagnosed.

At work tomorrow I am calling the insurance people at the charity that pays me to find out what they're doing to me. If need be, I will call the Insurance Commision and the Inspector General, who certified me as a Compliance Officer. I am angry, seething. I hurt really bad. I've been having severe tremors for the past few days. I have an appointment with my MS nurse next Thursday. My stress level is so high right now that I can't go into all the what-ifs like I usually do when I'm anxious. I haven't told my husband yet. The only thing I can do is write here.

Yesterday I talked to a good friend, a former employee of mine. I told her how depressed I've been. Her dad has MS and she understands more than most of my friends. She was encouraging. She told me that I have a talent for persuading people and for getting people to listen. She said I'm a crusader for the underdog. I have always worked with the indigent mentally ill and/or chemically addicted. She said she has all the articles I've written to the local paper on her fridge. She told me that her boss (my former boss) said that one day I will be a pillar of the community, and he wants me to run for some political office and he wants to run my campaign. She told me to start a fundraiser to find a cure, that if anyone can do it, I can. By the end of that conversation I felt so uplifted, confident, and calm. Now I'm wondering how I'm going to deal with just getting out of bed tomorrow!

Please, please, please, I need your support and advice. I am terrified and I have never, ever felt this alone.
17th January 2008
Wow April. I just read this and HAD to write to you. I dont know what I can say, which you dont already know, but you NEED TO KNOW YOU ARE NOT ALONE in this. Youre not. We're all here for you...

First, I will say that you are extremely articulate and capable of handling this...your post alone, demonstrates much knowledge about what you are speaking about, as well as how the insurance agencies operate. You know already what you need to do. I have doubts that the company you work for can change a policy for only you...I could be wrong, but in my lifetime, and my background is similar to yours- Ive never seen exceptions made for only one person. I guess anything is possible...but find out before accepting that answer!

Next, you have the knowledge of whom to contact with the insurance commisioner and inspector general...USE THOSE CONTACTS! And, another suggestion would be to call Avonex and explain the situation to them, sometimes, they do help you on a month to month basis until you can straigthen out things...especially since you HAVE been on this drug for some time.

I just went thru something similar..my husband covers my insurance, and his company (Union) changed pharmacies and benefits..I found out my Rebif went from 50$ a month to 100$ a month in co-pay - not a big deal when you compare it to what you are talking about BUT They also told me that the benefits wouldnt kick in until my husband went back to work, hes currently laid off...thats not supposed to be until late March! I had only one weeks syringes left, no idea how I was going to get my meds, or from who- and was seriously POd that the Union and all their glorious benefits was allowing this to happen....when I called them, I gave it to them good! They informed me that they would handle it....a week later, it was still not handled...I wound up calling Rebif and explaning the situation to them- they did come thru. They sent me a month's worth of meds for NOTHING! Within 3 days of them arriving, the Union did in fact come thru and informed me that they were continuing my "speciality' drugs with the old pharmacy for 3 months until my husband was back at work fulltime....strange, since his insurance covers us unless he is unemployed for an entire year, and its only been one month! They still cant explain to me why what happened - did...but at least I know where my next month's drugs are coming from. It takes leg work, some yelling and screaming and even alittle begging- but you will get it done. Youve got more ability then the average person because you have a better understanding of how this works...

Now, about the relapse you think youre having..stress will do it every time. YOURE STRESSED GIRLFRIEND. Try to stop. Tonight, Immediately. Drink a cup of herb tea- take a xanax- have a shot...whatever it takes to calm you down and get you into bed and asleep. You cant afford to let yourself get this upset right now...if its a relapse, theres nothing you can do except get on steroids. If its just aggravated symptoms due to the stress your under you need to do something about it. I know this is easier said then done, remember Im the chic who just had major surgery and almost gave myself a relapse worrying about it- but IT CAN BE DONE and we will all help you thru this with support....you need to start by taking things into your hands tomororw and making those calls...its friday, start early so you get answers before the weekend...you might also put a call into your Neuro and make an appt- it will make you feel better knowing you have a doctor to see to evaluate you..if nothing else, maybe he can give you some anxiety meds to get you thru this. Believe me, nothing wrong with popping a Xanax to help you thru a bad day/ week! You dont have to stay on it long and trust me it helps! And, then you need to call that good friend who understands you so well and start picking slogans for your political future! You have it in you to do anything you want to do with your life, and this isnt going to stop you!! I know youre only half kidding about your capabilities in the political arena, but my point is that you need to surround yourself with people who believe in you and start looking ahead immediately. Make plans to have her over for coffee this Saturday morning- call family and go visit...whatever it takes to get yourself calm and around calm people.

You can do this April....please keep us posted on how youre doing over the wekend and what you find out tomororrow. Good luck.
Nikki
17th January 2008
Bless you, Nikki, for responding. And I've already popped a couple Xanax and had a cup of Sleepytime tea. I laughed when I read your recommendations. It looks like we calm down the same way.

My husband came home and I told him about ten minutes ago. He said we'd cover the cost, and he said the same thing you did--that I'm giving myself the possible relapse because of stress. Sometimes he comes thru for me, sometimes not so much. I'm glad he did today.

After calming down a bit, I resolved to give them all heck tomorrow--everyone. The Avonex people, the Group people, the insurance company, the Insurance commisioner, and the Inspector General. This is not right.

I don't have plans to go into politics. I belong to a PAC that advocates for insurance parity and reducing the stigma of the mentally ill, I campaign for a certain party, and I work the polls. That's enough for me. But having people that think I could do it is VERY reassuring. I know some politicians, and I don't want to become one. I would consider being some sort of advocate, though, and I plan to become very involved with MS fundraising like my friend suggested. Fundraising is one of my jobs at work anyway.

To avoid what happened to me last weekend, I've made plans. My kid sister and I are having a slumber party tomorrow night. Our plans are, after my shot, to eat lots of junk food, drink some vodka, and play cards. I already told the husband that he's sleeping on the couch, because sis and I will be in bed watching bad TV all night. Apart from the vodka, it'll be just like when we were kids, and I've been looking forward to it for days. My sister is one of those happy go lucky types and she's absolutely hilarious. Nobody makes me laugh like that girl can. She's the best medicine for me right now.

Thanks for telling me I'm not alone. Sometimes it's easy to forget. And the truth is, without this board, I would be. I've been reading about your experience, and I'm sorry about the interview, but I believe what the others said about this being a blessing in disguise. I've been too depressed to post these past few days, but I assure you I've been thinking of you every day. I hope you're getting rest! I felt so bad when I read that you had to sleep sitting up on the couch. You are one strong and awesome woman!

I am very grateful to you for responding to my absurdly long post, and eternally grateful for everybody on this board. I can't thank you enough!
19th January 2008
Well, yesterday at work I got to the bottom of the situation, which is basically that my insurance company DID change my deductible without notifying me. Just to be sure, I went through all the mail I've recieved about my benefits after the new year.

I talked to the Avonex people and they have agreed to let me make payments. As long as I make a substantial payment each month, they will ship my meds. They were very nice about everything and they were pretty angry too. My insurance company hadn't notified them either.

Since I'm the CEO's assistant and we know the people who run the Group Benefits very well (the people who work for the charity that funds us), I decided to tell him about all of this yesterday. I may rock the boat a little and I wanted to warn him. He told me he's behind me, he has my back, and to do what I wished. He suggested that I wait until Tuesday (we're closed for MLK Day) to contact them so I would be more business-like and less angry. I decided to act on his suggestion. So I have not talked to them yet, but now, since I'm calm and have had time to think, I know exactly what I'll say and how to proceed.

The letters to the Insurance Commissioner and Inspector General are in the mail already.

I had my shot last night during my slumber party, and my side effects are much improved since last week! I am walking with a slight limp, my tremors have not improved, my skin is burning a little bit, I have to pee every 15 minutes, and my joints are throbbing with pain--but I feel fabulous! My anger over this whole situation has turned into a motivator. I have more energy than I've had in weeks.

I've been counting my blessings. I need to write them down somewhere. I took a look at the big picture. If for some reason I have to skip a few injections, the world will not end. I chose in the beginning to treat this disease aggresively, but a few missed injections won't ruin that. There are people on this board who have never used a DMD and they're doing just fine, and so can I if that's my only choice someday.

I looked at events during my life that were terrible, but I survived them all. Every bad thing that ever happened to me, every awful experience, made me stronger. I was forced to grow up too early and I made it without breaking my spirit. I can honestly ascribe many things I've learned to bad things I had to go through. I ended up benefiting from all of it. MS is no different; neither is this mess with the insurance company. Judging from past experiences, and I know this sounds weird, I think that MS may be a gift of some sort, a blessing in disguise. I choose to see it that way.

I may not be this optimistic every day, but I'll try. I absolutely NEED to turn MS into lemonade. If I don't, I'm in big trouble.

We all leave an imprint on the world. I want to leave a big one.
19th January 2008
April. Im so proud of you. Your words in this post reflect such maturity and understanding of things which MOST people will NEVER understand. Look back over people's posts...see how many times people say they dont understand the disease or WHY THEM and look at how few people actually can say that in some strange way, MS has given them a gift...your description of "MS may be a gift of some sort, a blessing in disguise" is amazingly well worded when put into the context of your post.

Im really glad you have the people at work behind you and think its wise to wait until Tuesday to make those calls...also happy to hear Avonex is working with you...and although skipping meds for a week or two wouldnt KILL you, its not advisable to start and stop them...so, youre doing the absolute right thing pursuing this quickly.

April, youre my hero this week. Last week someone mentioned giving gold stars out to a few people who really had it rough and came thru with flying colors- this week, you get it! You did really well in your pursuit of this. Please do let us know in the future what happens when you talk to the powers that be...

Glad you had fun at your slumber party! Wish I was there! Tonight, giving my husband a night out...the first time Im able to really get dressed and put on clothes...since things have been so lousy overall for the past 10 days, Ive decided to wing it and take him to dinner and come home and drink a bottle of wine, maybe rent a movie...trying to be the dutiful wife and show some appreciation....Im going back to work on Monday and have over 50 clients to see this week, so its going to be brutal- but Im looking forward to using my brain again...its been laying dormant this whole week!

Big hugs
Nikki
 
 

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