Ampyra denied

[nkh18]

After taking Ampyra for 6 or 7 years, I have been denied by my new Medicare Advantage plan because I can no longer walk. I had no trouble getting it before because it still helped me with overall strength to stand and transfer, upper body strength, fine motor skills and heat tolerance. We filed appeals with notes from 2 doctors and one from me stating how detrimental it is to be off the medicine, (I was off it for 2 weeks and became extremely weak). They continue to deny it. I've tried other medicines, but Ampyra seemed to help the most. Before I signed up for my plan, I talked to at least 2 representatives who assured me that Ampyra is covered and since I was on it now, it would be no problem to continue. How can they do this? I'm very frustrated and worry about having to try yet another medicine.

[jreagan70]

How can they do this?

They can do it because what you're using Ampyra for is not the use for which it's FDA-approved.

Healthcare insurers can limit their coverage of medications to only those uses that are FDA-approved. Ampyra is approved only to improve walking, as demonstrated by an increase in walking speed. If you aren't walking, you aren't using it to help with walking, so your Advantage plan carrier can deny coverage.

Using Ampyra to help with general strength is an off-label use, and they don't have to cover off-label uses if they don't want to. It's just that simple. All of the appeals are for naught because you're appealing a non-covered use. It's kind of like a person who doesn't have MS appealing the denial of Copaxone.

It's not standard in the industry for sales representatives to have in-depth knowledge of pharmaceuticals, including what the covered and off-label uses are, or to be able to interview someone to discover whether their purpose for using a medication is approved or off-label. The sales reps only know what drugs are on the formulary because they can read from a list. Formulary lists don't include all the nuances about usages that only people with pharmaceutical knowledge would know. So you can't really hold it against the sales reps for not knowing something about Ampyra that is isn't their job to know.

Next open-enrollment period you might try asking to get an interpretation from a carrier before you sign up. The problem with that, though, is that the company has little incentive to go to all of the trouble of researching a drug and its coverage for someone who isn't already a paying customer. You could try, but you might get the same answer you got from the reps for the carrier you signed with.

In the meantime, have you tried 4-aminopyridine from a compounding pharmacy? (4-aminopyridine is the active ingredient in Ampyra.) If not, if your doctor will prescribe it for you and you're willing and able to pay for it out-of-pocket, it might be an effective substitute for Ampyra.

[nkh18]

Thanks for the explanation. I will be asking my doctor about other medicines that could help. It's hard because there's not a lot out there for SPMS. I'll also check about the compounding 4-amino... Maybe that will help.

[knuckle]

Thanks for the explanation. I will be asking my doctor about other medicines that could help. It's hard because there's not a lot out there for SPMS. I'll also check about the compounding 4-amino... Maybe that will help.

I've been taking 4-ap now for about eight years - 10mg instant release every six hours - costs about $40 a month cash from Skip's Pharmacy mail order.

I'm SPMS and take LDN and Alpha Lipoic Acid, Biotin, Curcumin,

[nkh18]

Thanks knuckle. I'll look into the 4-ap right away. $40 sounds good.

[nkh18]

[QUOTE=knuckle;1491931]I've been taking 4-ap now for about eight years - 10mg instant release every six hours - costs about $40 a month cash from Skip's Pharmacy mail order.

I'm SPMS and take LDN and Alpha Lipoic Acid, Biotin, Curcumii

I have an order in now to Skip's. I never knew there was a cheaper alternative for Ampyra. I could have saved a lot of money. My copays weren't cheap. Thanks.

[its2much]

Medicare Part D

I've heard that Medicate Part D plans pay for more medications than do Medicare Advantage plans. Of course, they cost more..... Maybe not in the long run if they cover drugs not on your Advantage plan.
Most states have places were you can get help/information regarding which Medicare plan(s) are best for your situation.

[nkh18]

I'm kind of stuck for this year. I'm starting 4-ap soon. I hope it works as well for me. I've been off Ampyra for a couple of days and had an exceptionally weak day today. It's so frustrating trying to figure out what works and what doesn't. Thanks for all the advice.

[Mermaid Susan]

Ampyra

I take Ampyra also. I've noticed that it helps any movements, not just walking. I can even change clothes faster in and out of the pool, which is a great help. When I mentioned this to my neuro at my last visit, she said that Acorda might be starting a study for other movement, not just walking. I hope that comes true.

I have Medicare Part D, but I still get Ampyra patient assistance for the cost. This medicine is such a high tier on my plan and has such a high cost that I could never make the copay. It's a percentage.

Good luck!
Mermaid