Ampyra

[mrsmike]

Anyone out there taking Ampyra but getting it thru their financial assistance program? As of December 31, they have terminated the program because there is going to be a generic version mid 2018, so they say. No one can tell me who will make it, what it will be called or even if my Medicare Part D Rx plan will cover it, and that the cost even though generic might be as prohibitive as it is now. Anyone else having trouble with this? I can't believe that I am the only one.

[Kenu]

I am not on this, but seems funny no further information on it 🤷🏼‍♂️ I tried it about six years ago but didn’t help 😞 Good luck 👍 🙏Ken

[mrsmike in reply to Kenu]

I know. It is absurd. I can't begin to tell you the hours that have been spent trying to find out what is going on. I have a few months supply, hopefully I'll find out what is going on before I run out.

[Allen5280]

I am not on it personally, however there are other medication Grant programs that you may be able to apply to other than the manufacturers assistance. I know that for assistance for my Copaxone, when I was taking it help came through the health well foundation.

healthwellfoundation.org/

there is a link to theirsebsite.

[mrsmike in reply to Allen5280]

Thanks. I'll check it out.

[Allen5280 in reply to Allen5280]

mrsmike I should have checked their website cause I forget everything is always changing and healthwell has closed applications for multiple sclerosis ... what a bummer so I got to digging around and found another possible through MSAA information page

needymeds.org/

[Allen5280 in reply to Allen5280]

For me I have gotten to the point financially (thanks to ms) where I am on Medicare for my primary and now medicade through my state and even small amount of food assistance. It has been a complete financial devastation for me. So with all that said if MS is ruining anyone else's finances the less you have the more help that is available. I am not happy about my financial situation whatsoever, however i am glad the help is available. I never in a million years dreampt that I would be a charity case at all. I couldn't have even imagined such a state of chaos. I am still thankful for funding that I have been helped with. It's not an easy road whatsoever but at least it is there when everything falls apart. 😔

[mrsmike in reply to Allen5280]

I understand. You have to be scraping by with just about nothing before you can get any help. Keep your chin up, thanks for the help, and I'll keep you posted.

[CynthiaS in reply to Allen5280]

You are not alone. My thoughts, even when the glass appears empty ; it is still full of oxygen. Smile

[JackG1946]

This is the first I have heard of this! You are scaring me! Big pharmaceutical companies out to make fortunes from thae very people they are supposed to be helping. I hope someone has real answers about this.

[mrsmike in reply to JackG1946]

I keep trying to find out the answers...but with no luck! Thanks.

[Eleyne92]

I am on Ampyra, and I am currently receiving assistance through the PANfoundation. (Patient Access Network). If they aren't taking applications at this time, they will send you a list of other co-pay assistance programs. Its worth hanging onto the for future reference, too.

[mrsmike in reply to Eleyne92]

Thanks! I'll check it out.

[undisclosEd]

I'm in same boat since they cancelled the assistance program, and also on Medicare. They sent me a final 90 day supply to last through March. I will switch to 4-AP if the generic is too expensive.

See if you can locate a Pharmacy that provides 4-AP ( Dalphampridine ). 4-AP is the compound that is in Ampyra / Fampyra, but without the timed release factor, and has been used by MS patients for years. In the USA it is available for @ $40.00 per month, but does still require a written prescription from your Dr.

[mrsmike in reply to undisclosEd]

Hi, so I'm not alone!! I was getting the feeling I was the only one in this predicament! That was my neuros answer to the problem. She told me though it would cost in the neighborhood of $100/month, that I can deal with, but the cost of Ampyra is totally prohibitive for me.

[Elle61]

I take Ampyra , I have to get pre-approval from my Doctor every 6 months and I receive it from a Mail order pharmacy . I like it .

[mrsmike in reply to Elle61]

Before I went on Medicare that's the way it worked, but now with Med Part D, it is another ball game. My insurer still wants $1600 a month and Acorda/Ampyra is no longer giving financial assistance. It's going generic summer 2018, but what do you do in the mean time? That's what my problem is.

[RobertCalifornia]

I have been on Ampyra for several years but recently went on Medicare. My part D insurance would have me Pay $800 per month copay. My neurologist prescribed 4 Aminopyridine compound 10mg sustain release #3 capsules. Look it up on the internet. This compound drug has been around for years. The drug company called it Ampyra and patented it. A compounding pharmacy can make this up for you. Mine charges $50 for one month and $95 for two. I am sure I could find it on line for less but you do need a prescription for it. My neurologist is a MS specialist at a teaching/research university.

[mrsmike in reply to RobertCalifornia]

Thanks, I think that is the route I am going to have to take. There is a compounder near me, so it shouldn't be a problem...I hope!

[cljones]

@mrsmike I am also on ampyra and have been told the same thing. They gave me a list of assistance programs I can check into for assistance but they couldn't tell me the name of the new drug or when. I know I can't afford to pay for it on my own. I am also on Medicare and have part D through Silver Script. Keep us posted when you find out anything and I will do the same.

[mrsmike in reply to cljones]

I'm still trying to find out when it will go generic, what it will cost and if my Part D (Humana) will cover it, after that if all else fails I guess I will have to go to a compounder.

[pmbevac]

I've been on Ampyra go a bit over a year. I Believe it is helping quite a lot with walking and other symptoms. Hadn't heard anything about the assistance program going away. I'm due for a refill next week... Guess I'd better sort something out. On a side note my insurance company (Pacific Source) is no longer applying co-pay assistance to the deductible and out of pocket limits, at least not from the Aubagio One to One assistance program. Now I'm curious how many other insurance companies are doing this.

[mrsmike in reply to pmbevac]

Hi pmbevac,

I received a letter in Nov 2017 that Acorda was no longer going to provide assistance as of the first of the year, 2018. I am on Medicare, and getting it thru my med part d, the cost is out of the question.

[pmbevac in reply to mrsmike]

Well, it looks as though the assistance program is still working for me. Ordered it last week and was charged the $40 co-pay like last year. I'm not on Medicare so that may be the difference.

[mrsmike]

It only has been terminated for people on Medicare. Still looking into financial assistance elsewhere, but chances are.I'll go with a compounder.

[pmbevac]

mrsmike

This may not matter as the difference appears to be Medicare, but maybe this will help someone else...

I have to correct something I said. I did receive a letter from Acorda in December last year. But the letter says that there may be a change in your copay because: "some insurers/payers have increased deductible requirements, and others no longer permit the copay assistance provided by Acorda to be applied to your deductible. Therefore if your out of pocket cost for Ampyra increase in 2018, it may be due to your prescription drug coverage, not the amount of copay assistance you are receiving from Acorda". I don't know if this is the same letter you received, but it seems to me they have not stopped the plan, just warning that the assistance they provide may not go towards your deductible.

At any rate I did receive some assistance (only about $208 as my Aubagio refill earlier in the year had eaten up the bulk of my deductible & OOP limits) from them with my last order and it appears it was applied to my deductible. So I don't know what is happening with the insurance & drug companies, but it sure is confusing.

I know that when I had my Aubagio prescription refilled in January my insurance said the copay assistance I get from them would not go towards the deductible. So I ended up paying the cost and the Aubagio copay assistance will reimburse me once I get them the receipts. Gotta give a shout out to CVS Caremark & Aubagio for recognizing the problem and providing a solution that keeps me from having to eat the $$$$ and get credit for the deductible.

[mrsmike]

Hi, I received a different letter. Mine was definitely directed to Medicare clients. All assistance was coming to an end. I am now going with a compounder, for a cost of $150 for a 90 day supply. I would prefer the real deal, but it is what it is.

[Mdernirishman13]

I went off of ampyra but have a 90 day supply of unopened bottles. What should I do with this?

[png984 in reply to Mdernirishman13]

Do you still have it? I would be very interested in it since I had to stop Ampyra when I ran out in January. I forgot to refill it in December for the last time through Acorda & since I'm on Medicare they no longer fund it. My walking has gotten terrible since January & I haven't found any other copay assistance yet.

[MichaelFleeger]

I can no longer afford since it has gone generic Medicare price is too high. Without assistance which I have not found, I'm not taking it anymore. My neuro looked at me dumb founded and said he couldn't help

[mrsmike]

Have you tried a compounder?