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Old 08-15-2012, 09:58 AM #1
jprinz99 jprinz99 is offline
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Default choosing med first time

Going in to neuro next month to "get started on a med" (i.e. CRABs, etc)

I called my Medicare Advantage plan's patient advocate that is assigned to me. Nice lady, helpful. She said they don't approve copaxone or avonex unless I can't take others. So my choices are the others. Also learned the ins co "process" requires the neuro to get authorization first from my ins co (Anthem BC/BS Med Pref Premium PPO- Virginia plan). Also learned those of us with Medicare are now having tougher time getting drug companies provide drugs free/low cost due to the laws passed (thank you politicians & pharmaceutical companies...)

Seeking advise on pros/cons of the rest of drugs

Also how do any of you (at least who get Soc Sec and have an advantage plan) afford this stuff??? From what I have been digging up I may not even need to choose a drug- as I cant afford the "specialty tier" 33% copays!!!

sigh- just as I get ready to fight back this monster, I find I may be unarmed
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Old 08-15-2012, 10:13 AM #2
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Jane,

I am sorry that you are limited in your choice. I thought the government was changing the rules to get insurance companies out of making medical decisions but here it sounds like the government is deciding that you can't have Copaxone. Yet.

I did well on Avonex except for the weekend flu. It worked for me. I got 1 new lesion at the end of 5 years and no exacerbations. Then I went to Rebif and got depressed (side effect of interferons). Now happy on Copaxone.

Massachusetts is working to change a law so we can use coupons and discounts from drug companies- it may have already passed.

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Last edited by ANNagain; 08-15-2012 at 11:05 AM.
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Old 08-15-2012, 11:58 AM #3
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copaxone just came out with a promise that no one shall pay more than a $35 co pay per month who takes their drug. Since you need to fail off another one first (which is just wrong) you will have to try Avonex (which now has a small needled, auto injector, and is once a week) or Rebif (3x a week) or Betaseron (every other day) All have about the same side effects.

You wont know which way it will affect YOU till YOU take it. I didnt react well, but my friend has been on it 10 years without a single issue.
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Old 08-15-2012, 03:18 PM #4
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I got so excited about 35 dollar copay program until this:
(copied from their site)

Terms and Conditions: COPAXONE Co-pay Solutions™ is open to both new and existing patients who are residents of the US or Puerto Rico and who have private insurance coverage. The offer is not valid for patients covered in whole or in part by Medicaid, Medicare, TRICARE, or any other federal or state government pharmaceutical assistance plan or program (regardless of whether a specific prescription is covered), or by private health benefit programs that reimburse for the entire cost of prescription drugs. Use of this offer must be consistent with the terms of any drug benefit provided by a health insurer, health plan, or private third-party payor. This offer is void in Massachusetts or where otherwise prohibited by law, taxed, or restricted. No additional purchase is required. This offer is valid only at participating pharmacies and may be changed or discontinued at any time without notice. This program is not health insurance.

I wonder if this means me since I have a M.A.P.
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Old 08-17-2012, 02:54 PM #5
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Great! If I read correctly, I will be dealing with this dmd nightmare in 1 1/2 yrs. Im on ssdi right now but wont qualify for medicare for another 1 1/2yrs. I pay nothing now as I dont have any health insurance and our income is low. I guess maybe my copaxone friend will be leaving me then. This was the last dmd I was willing to try. Well, I went 10 yrs w/o a dmd, I can do it again
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Old 01-09-2013, 09:34 PM #6
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I am just reading this thread and I wanted to know if this medication will cost me a lot of money.
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Old 01-10-2013, 12:57 AM #7
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I'm curious about your statement about your Medicare Advantage not covering Avonex. I winder if that is state by state or even providers. I have been on Anthem Medicare Advantage for about 3 years now and have been on Avonex alll that time. But I was on it while I was on my husbands employer plan before that. I have never been on any other medicine
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Old 01-10-2013, 02:08 AM #8
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I don't know if this helps or not, but some companies have a special program for Medicare patients. I'm on Medicare because I have SSDI, and when I was taking Tysabri I got a special Medicare price--I think we only paid something like $10 a month for the Tysabri, and then another $30 to the hospital for infusion charges.

It helps to talk to a rep from the drug manufacturer and find out as much as you can about discount payment programs. Biogen, for example, which produces both Tysabri and Avonex, has a number of programs for people both with and without Medicare.
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Old 01-10-2013, 02:21 AM #9
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she said that they would not pay for Copaxone....

I am getting ready to go on copaxone and I wanted to make sure they were not going to charge me hundreds of dollars for it??? I can ask them in the morning. they were close whe I post and just thought I would ask. I am paying for enough meds since they kicked me off medicare part D which is why I am on Humana now and my co pay for meds went up.
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Old 01-10-2013, 08:28 AM #10
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What a mess! They used to consider ALL CRABS about the same as a starting med and all were covered by insurance companies after the company battled it out with your insurance company. Many dont want to take A/B/R because there is a high risk of depression. Many didnt want A because it was a huge needle once a week into a muscle and they spent their weekend off with fevers, flu sx, and miserable. MAny wanted Copaxone even tho it was once a day and had the risk of the IPIR.

When I started on Beta back in 2006 it was $900 per month. I was on it for 2 months and I saw 2 increases in price. It was $1,100 per month. I was switched to Copaxone which was $1,145 per month. Each and every month I saw the price climb. By the time I laid down my needles in 2010 the price was $3,600 per month. My insurance only covered $5k per month for ALL of my prescriptions and that last bump took me right to the line. I got a letter telling me that I would either have to invest in a larger prescription policy or pay the overages.

Glad I quit because my job switched all SSDI clients over to Medicare D and then placed us all on a program that covers most of what MEdicare D wont. This saves them money as it forces the government to pay first. Medicare went to the head of the gate and now unless medicare approves my treatment, my Bc/BS wont. If they approve one penny my insurance will pay the rest.

This seems to be a common trend happening in SSDI patients that also collect a pension. We are being forced to place government programs ahead of the programs we are paying for. I pay a hefty price to keep my 2ndary and other insurance plans in place.

Its so complicated now. I would suggest calling the company that represents the drug you choose and ask for their help. The operator will know about programs, requirements, and hoops that need to be jumped thru before you can qualify. Many neuros cant keep up to the changes, so its best to call the company directly. The Beta nurses are fantastic. They were quickly able to tell me all about their programs.

Best of luck.
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