Copay assistance

[rsinger]

I have been very fortunate since I turned 65 to have copay assistance for Tecfidera. Not easy to afford this or any of the treatments for MS without assistance. This year generous donors have held back their contributions. Given the economic climate I certainly understand. I am currently on the wait list for 3 foundations. So far funds for multiple sclerosis are closed. Spoke with Biogen and was told that they never let patients go without their medication. They do have a free drug program which I am hoping to get help from.
Anyone else in this predicament? Would love to hear from you on this forum.

[robert152]

We are. My wife is on glatopa and was receiving help from the assistance fund who notified her they probably will not cover MS for the 2021 year for the reason you stated. We contacted novatris and they mailed an application for assistance but I have no idea if we will qualify for it. We see all the commercials for no copays or very low copays on TV but because our insurance is through Medicare we are not eligible due to an arcane 1972 law. She has enough for a couple of months so we’ll see what happens. Have you contacted your specialty pharmacy? Ours is ACS and they are checking around for us. This has been kind of a rough year for my wife so we were discussing going off the glatopa but I am really concerned at age 78 these new drugs might hurt more then help.

[rsinger]

This is going to be a serious problem for many people. Biogen does have a free drug program but I haven't reached out to the pharmacy yet. Thanks for the tip. 2020 will have lasting effects for so many people on so many levels.

[4boysmom]

I am hoping to be off MS meds at age 65. I have never really had relapses as such, just a generally slowing down over the years. I have been on DMDs since 2005 when diagnosed. I go to a pool 4 times a week, and that helps. But I still can't walk far without a cane or shopping cart.

[robert152]

That sounds like my wife. I cannot remember her having a relapse. When we first started this journey she was diagnosed by two “big guns” at university hospitals. The first diagnosed relapsing-remitting, the second advised he would have diagnosed primary-progressive but would not overrule the first. We went to a third very young doctor who said he didn’t know but told us not to push it and accept the relapsing diagnosis so the insurance companies will pay for the meds. He prescribed copaxone and that and is what she has been on ever since. This was 21 years ago and she has done very well up until this year where she has been more fatigued then usual and has started falling. We were talking about going off the meds but after this tough year she has had we don’t know what to do. We are looking at the meds for the progressive form but when you look at the side affects it’s down right scary, especially at 78

Back to copays. I’m may be wrong but I think it’s in the drug manufactures interest to help us Medicare folks with copayments and they will find a way to do it without breaking the law. I hope I’m right.

[VikingKitty]

I recently will be starting back on Tecfidera, however, my insurance only covers the generic Dimethyl Fumarate. And my insurance carrier only covers 50% of the cost. The rest has to be picked up by a copay program. I just found out from the specialty pharmacy that I may have to pay upwards of $650 for the generic meds because the copay assistance from some manufacturers only covers part leaving me with a $650/mo bill every month which is OUTRAGEOUS.

If they are able to fill the order from Mylan, I can get the $0 copay. But they are telling me that they no longer are going to carry the Mylan brand.
I feel with the way they keep changing the rules & insurance, they are trying to stick the patient with exorbitant costs.

I did contact Biogen about the free drug program to see if I’m eligible. They did also say that they are discontinuing the program in May 2021.
Hope I’m making sense. I’m in the middle of recovering from a steroid-worthy flare and pretty fatigued and confused

[rsinger]

I was just looking into this problem. Getting funding assistance is a challenge now. I've been checking each foundation daily and was able to get a grant from Health Well Foundation on Monday Dec 28th. The funding is still available. I take Tecfidera. It looks like the grant would carry me though 2021 with the generic. I didn't want to switch to the generic but it makes sense financially. I would recommend looking into the foundation I mentioned as all others don't have assistance at this time.

[robert152]

rsinger , Thanks for the info. I just submitted a application for my wife. I’ll let you know what happens.

[rsinger]

robert152
Hope you have luck. Keep me posted.

[VikingKitty]

Well, I did end up getting the copay assistance from Mylan for my December order, however, when I went to place my January order, the specialty pharmacy let me know there is no more copay assistance from Mylan, Teva, or Cipla for the Dimethyl Fumarate.

I'm reaching out to all sources to find out why? Biogen does still offer $0 copay assistance.

[rsinger]

VikingKitty
That's true. You need to reach out to the foundations. I had assistance from TAF for a few years. This year I managed to secure a grant from Health Well. TAF and PAN opened up funding for MS. Doesn't matter if you use the generic for Tecfidera when getting copay assistance from these foundations.These foundations opened up funding in January. Try reaching out to them.

[robert152]

Rsinger, we received funding for 2021. We had the assistance fund and they sent a letter that we could not renew as we had previously. We applied again and also applied to Heathwell . Healthwell sent us a letter saying we were approved and then we learned from our pharmacy that TAF also approved us. We went with the assistance fund and canceled Heathwell with profound thanks.

just an aside. In December I wrote a short letter to Present elect Joe Bidden, Wilmington Delaware. That was the only address I could come up with and asked him to look into how we Medicare folks were being excluded from drug company’s offering copay assistance due to some 1972 law when the rest of the country receives it.I have no idea if it arrived but it wasn’t returned. Maybe it even reached him. One can only hope.

[Mamabug]

I've been following this, with interest. It doesn't affect me because I d/c a DMT, with my MS Specialist's blessing, due to progressing to SPMS.

But it is an issue of such importance to people w/ MS on Medicare.

[robert152]

Mamabug, how have you fared being off the meds? I have been injecting my wife with copaxone for 21 years and every time I do I feel that I am poisoning her and it is not helping her. When she was diagnosed she had two different opinions, one RR and the other PP. the third said he didn’t know but don’t question it for insurance purposes. We have been seeing the third doctor for all these years. I never remember her having a real relapse for 20 years but this year she is very fatigued and has fallen several times. I believe the doctor who diagnosed PP was correct. I’m afraid of the new meds for PP, especially for a 78 year old. She says she’ll stay on the copaxone. I have suggested a few times that she just go off them but she is reluctant to do so. I hope you are doing OK.

[rsinger]

robert152
Great news that you got the funding you need. Funds opened up right away after the 1st of the year. I also had funding from TAF for a few years only to find out in October of 2020 that funding may not be available for 2021. I began to aggressively search the remaining foundations daily until I was lucky to get funding from Health Well. I accepted the grant from Health Well immediately with much gratitude. Doesn't matter who helps you get your medication as long as you get the help you need.