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!!!:eek:

sigh- just as I get ready to fight back this monster, I find I may be unarmed

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.

ANN

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.

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.

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 :Sigh:

I am just reading this thread and I wanted to know if this medication will cost me a lot of money.

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

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.

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.

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. :hug:

The company just called me today. They wanted to see if I qualify for the medicare program that helps with the cost since I am on a advantage plan I could try but I didn'[t qualify because income was over $1600.00 per and then she said there is a non profit program that will help you out as long as your household is not bringing in over $50,000.00 per yr, ok we are not at this time so she put me in for that one and said they would give me a call.

She said my co-pay should be between $10.00 and $50.00 I asked so if I don't get any help how much would I have to pay out of pocket for co-pay, she said $1500.00 per month.

So if I don't get help I will not be taken these meds. I can not afford them I don't want to pay $50.00... I went from paying $1.10 per prescription to $6.00 - $45.00 per prescription that I am on now all because my husband moved to Philly with me and got a job. So moving to Atlanta with unemployment still kicked me out of the help I was getting for premium of medicare and my prescriptions.

I just remembered there was a reason why I was going to stay in Philly.

remeber- every year the details of what an insurance does or does not cover (and for how much $) can change, so I encourage you to read, read, read those plan details, formularies, etc.

SSDA/SSA and SSDI can have different financial impacts, not the least is of which may be the availability of recieving the low income subsidy/copays

Private/employer sponsored insurance, govt sponsored insurances (TriCare, Medicare, Medicaid) and "group" insurances are not operated exactly the same. Heck, an insurer can have thousands of differing policies, depending on plan selected, premiums, coverage area (where you live) etc.

My new Med Adv PPO covers all the MS inj/oral drugs- but at the specialty/highest tier level. So I can now get the drugs via insurance IF I could afford the coinsurance percentages. C'est la vie.

For me, not having to choose a CRAB due to restrictions or finances almost makes it simpler. No decision or stressing.

Hi jane
 

Yes, I have had issues getting medication too. Glad we can talk about this here on NT. I wrote 8 begging letters to a medicare part D provider last year. Got disgusted that so many were denied to me. Changed the proveder this last december. The interviewer went over all my medications and said they were all covered. Got my new formulary, guess what, two arn't on it. So did they just lie to me to get me to sign up???????????????????????.
I think alot of folks are getting turned down for medications. Mine was for asthma, an inhaler, and singular. Both cost a fortune. I wonder how many others are having trouble getting meds. Sorry this happens to you too. ginnie