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  #1  
Old 08-31-2010, 11:14 AM
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georgiapug georgiapug is offline
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Tysabri and Medicare

I am on Tysabri and I start Medicare in Oct. I almost fell over when I found out how much it cost on Medicare. I am going nuts, I can't afford this! I know that Ty will help you, but the infusion center won't. I don't qualify for low income.

Does anyone have any ideas? I am new to Medicare and don't know the in's and out's. Is there a way to get help for a something this expensive when you aren't low income. I don't have the money to pay for treatment and have to much for help, what a predicament!
  #2  
Old 09-02-2010, 08:07 AM
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georgiapug georgiapug is offline
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Is there absolutely no one on here that is on Ty and Medicare that can tell me how they did Ty with their Medicare coverage? Surely there is with all the people here. Please, I need some help.
  #3  
Old 09-02-2010, 09:17 AM
0485c10 0485c10 is offline
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I'm on Tysabri & Medicare. It was no problem, the doc just wrote the order. I recieved a call from my Tysabri case manager who went over my coverage detail and what it would cost.

Medicare picks up 80% of the cost of Tysabri and the cost of the infusion. Medicare picks up blood tests, the 6 month doc appointments and MRI at 80% like they do with all things like that.

Then my supplemental insurance pays the remaining 20%. I receive no bills from Tysabri treatment. I was on a patient assistance program for betaseron. When I used betaseron all I had to pay was $20 for mailing costs every 3 months. Tysabri costs me less than that-----medicare and my supplemental insurance pays 100% of everything....except gas for driving to the infusion center once a month. Depends on the price of gas which is less expensive to me. Betaseron or Tysabri.

That is one of the reasons I am very worried about JCV antibody test.

What if I get that test and find out I am positive for JCV antibodies..how could I afford to switch to something else?

Many people who were positive for JCV antibodies will be switching to Gilenia(fingolomid) when it comes out in september, the first oral drug for MS...but with the medicare donut hole I won't be able to afford that...so what would I do? I've got to stay on an infusion med. Tysabri or perhaps a new one when it comes out in a few years.

Campath(alemtizumab) is another IV med in phase 3 stage of trials. If that goes through I would have another IV med to switch to (fewer infusion per year too, which would be nice--i'm asking for alot.)

First it was only one infusion a month(12 a year) instead of of 15 self injection shots a month(180 a year). Now that I got it down to 12 infusion a year, I want it down further to 3 infusions a year. I hope campath gets through the trials successfully. I always have my plan forward in mind!
  #4  
Old 09-02-2010, 07:11 PM
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georgiapug georgiapug is offline
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Thank you so much for your reply. Let me ask you a question. When you say supplemental insurance to you mean a medicare supplement or regular insurance. I had the plan supplement presented to me by Humana and he told me that I would have to pay 33% of the cost. That is a huge
amount when you consider the cost of Ty. This is my problem, I can't pay that and if we can't figure something out I will have to go off Ty, and I am scared to death to do that. He said I was in the donut too. This is so crazy to me, no one can afford to pay 4 or 5 thousand a month for meds.
I have researched and researched on the computer and can't find a loop hole that will get me help.
  #5  
Old 09-02-2010, 07:13 PM
lindaincolorado lindaincolorado is online now
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Hi Georgia, I have a secondary insurance which picks up the 20% medicare doesn't pay.
Call Active Source (1-800-456-2255) to ask them about other places to get your infusion-price shop. I get it done at a hospital in CO or AZ and unless I am reading the Medicare summary notice wrong the deductible/coinsurance for the infusion is approx $26.00 with anywhere from $265 to 416. being the infusion charge ?? I might be nuts, but this is how it appears to me.

Hope it all works out well for you!
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  #6  
Old 09-04-2010, 10:14 PM
0485c10 0485c10 is offline
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Quote:
Originally Posted by georgiapug View Post
When you say supplemental insurance to you mean a medicare supplement or regular insurance. I had the plan supplement presented to me by Humana and he told me that I would have to pay 33% of the cost. . He said I was in the donut too.
I have researched and researched on the computer and can't find a loop hole that will get me help.
Yes I mean medicare supplemental insurance? .I have a medigap policy from Travelers insurance and it pays the 20% that medicare doesn't pay..

Some of your concerns don't make sense to me? Tysabri is covered under medical not drug coverage--so the donut hole has nothing to do with Tysabri?? Your humana rep doesn't know what he is talking about but is talking anyways.
He does not know what Tysabri is-its not covered under prescription drug coverage, its covered under under medical. What part of medical does your humana cover?

There are regional differences in cost. I'm in WI, which is a lower cost area.
Medicare pays $1,996.32 for the tysabri and $103 for the infusion every month.
Then my supplemental pays the remaining $499.08 for Tysabri & $26.82 for the infusion every month and I recieve no bills.

You may want to call Tysabri, talk to a case manager to ask him/her how much you will be billed and how much your insurance will cover.

Tysabri # is: 1-800-456-2255 likely anyone can answer questions.

Or at least bypass your humana rep and talk to someone who understands what they are talking about. Sometimes in this time of high unemployment there are people working in insurance companies that just want a paycheck and don't really understand what they are selling. Call the home office, if necessary.

You do have medicare + medicare supplemental insurance? I'm not sure where that 33% is coming from unless I don't understand your coverage--its medicare + humana advantage supplemental insurance right?

I just tried to look up Human medicare supplemental plans but it was to confusing to find out the coverages BUT if your talking about the donut hole and Tysabri---your confused. Tysabri is not in anyway affected by the donut hole--it is covered under medical---maybe talk to that idiot rep and explain the first 80% is covered under MEDICARE PART B I am uncertain how stupid that person is?? call tysabri or someone at your humana home office bypass the idiot rep.

Tysabri has a patient assistance program for the uninsured and underinsured. They will provide Tysabri free of cost and the under insured person is just responsible for the cost of the infusion. I know of an underinsured person, who was with a HMO that required she go to a infusion center in her network. And none were Tysabri touch infusion centers so she had to go out of network for her infusion that qualified her for Tysabri Patient assistance program....

BTW---perhaps I am so confused at your problem because you will not be on Medicare until October and maybe you don't have a supplemental plan chosen yet?
That a different problem--choosing a Medicare supplemental plan. Perhaps that is why I am so confused at your post? Don't select a HMO or any plan that requires you to stay in their network because Tysabri is done at approved touch infuision centers---you need the flexibility of going to those infusion centers.

Buying a supplemental plan going to those presentation is very confusing! I'm not certain where you are located but in WI we have an office of insurance & I just wrote to them and asked the complaints medicare supplemental plans had gotten in the state, then chose the lowest cost with the least amount of complaints.

posts about choosing medicare supplemental plans:

http://www.msworld.org/forum/showthread.php?t=104730

Tysabri website which shows Touch infusion center closest to you.

http://www.tysabri.com/tysbProject/t...ion-center.xml
  #7  
Old 09-04-2010, 11:15 PM
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skaggs27 skaggs27 is offline
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I was going nuts about the cost my self, It is crazy I dont pay anything for my infusion with Medicare&Medicaid I would be lost.... I get that statement in the mail and see ( please pay this amount 0.00 ) all I do is say OH THANK YOU LORDDDDDDD!!!!!!!!!
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  #8  
Old 09-05-2010, 08:53 AM
0485c10 0485c10 is offline
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Oh yeah, I have a medigap policy from Travelers insurance because it was the lowest cost with the least amount of complaints in WI. Then I selected Silverscript as my Part D insurance because the had betaseron in their formulary and they were the only part d plan that listed that had the ability on their site to list the monthly fees I would pay for each prescription I am on....to tell you the truth I'm not on any, just tysabri right now. But I was thinking of asking the doc for something for fatigue---the first thing I did was post on a message board what people are using. Then i went to my part D supplemental website, silverscript, to check what each med would cost me.

I pretty much selected them as my part D insurance policy for that reason. If they understand that I am very concerned about my monthly cost---they are gonna run their part D based upon what I am most concerned about.
The only problem I had with them so far was billing my premiums & they corrected the problem when I called and eventually I started sending my premium check a month early and the billing problems stopped. apparently I had to send it in earlier.

My Part D, Silver script

http://www.silverscript.com/en-US/new_default.aspx

My supplemental plan Medigap company doesn't operate in Georgia...so it does no good to tell you that...but I like it and am satisfied with it. It operates in Canada, and the northern states.
  #9  
Old 09-05-2010, 12:30 PM
502E79 502E79 is online now
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0485c10,

I'm not on Tysabri or near medicare and having to make medicare supplemental insurance choices.

However your responses to georgiapug's dilemma have given me a better understanding as to what is in store and what is in place today to assist us....

Sincerely, thank you!

Jer
  #10  
Old 09-05-2010, 03:23 PM
Samantha Burns Samantha Burns is offline
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how effective

how effective is it % wise?
  #11  
Old 09-06-2010, 04:01 PM
0485c10 0485c10 is offline
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Quote:
Originally Posted by Samantha Burns View Post
how effective is it % wise?
That's actually a tough question. When I started there were only the crab drugs at 30% effective and ty was twice as effective at 60%.

But now the orals are coming out and the high effective drugs are reporting different #'s kind of jokey-ing with each other about who is more effective?

I read the orals are 70% effective and I hear Tysabri is more effective than the orals?

I just can't keep up with it--I suspect its the way it reported that determines how effective it is..is it effective at lesions, relapses, preventing disability, preventing first relapse,the % of people responding ect..

I just base it on the crab drugs, tysabri is twice as effective as the crab. I'm not sure of the %, but it would be nice if they were reported next to each other with the same definition of what effective in that is being reported. Maybe by a trustworthy organization like the FDA--not all these news reports.
  #12  
Old 09-06-2010, 05:48 PM
lindaincolorado lindaincolorado is online now
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In the summer MSQR publication there was a report on emerging Meds for ms. It reported as follows:

Gilenia formerly known as FTY720 or fingolimod the annual relapse rate after 1 year given 0.5 mg was a 52% reduction in relapse rate. those give 1.25 mg showed a 38% reduction in relapse compared to Avonex. Gilenia does affect other organs, including the heart, liver and eyes. It does suppress the immune system and there are concerns about development of potentially serious infections.
might be avail summer 2010 ??


Laquinomod in trial reduced MRI disease by 60% compared to placebo. There was a favorable trend toward reduced annual relapse rates, as well as a higher number of relapse free patients vs placebo. This is reported in the phase II trial it is reported to be well tolerated with no severe side effects. It says tho that many adverse side effects are not detected till phase III trials.
Could be avail late 2011.

There is also Cladribine which is getting further research in order to evaluate the effects of long-term use and expand knowledge of the safety profile. It has been approved as a chemo treatment and is getting fast track FDA review as an ms treatment and may be approved 2010 as the first avail oral treatment. Approx 80% experienced no clinical relapse compared with 61%(??) in the placebo group. It is given in an 8 day or 20 day dose with not much difference shown between the 2 doses.

Another is Teriflunomide-given daily. It a RA drug that is in phase III trial for ms that could apply for approval within the next year. No % were given, doesn't appear to affect other immune functions and was well tolerated in phase II trials.

Hope this helps
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  #13  
Old 09-06-2010, 07:25 PM
0485c10 0485c10 is offline
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Thanks Linda

For posting the %, it really is getting confusing for me.
  #14  
Old 09-13-2010, 08:09 AM
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georgiapug georgiapug is offline
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OK I am still trying to understand this. I called the Humana man back and this is what he said. Because I am under 65 I have to have their advantage plan. His words.....we pay what medicare pays??? no we don't pick up the 20%. My question then is what do they pay for. I simply can't find a plan in Georgia for someone under 65. It's crazy, but this is what I am finding. The only one I could really get is Blue Shield and I have heard they don't cover well for MS treatments and not Tysabri at all. Ty is 3465.00 here, that would leave me owing 690.00 that I would owe each month and that doesn't even cover the hospital infusion which is 2100.00 here. I simply can't afford that without a supplement. Georgia is not a good state to live in when you are disabled.
  #15  
Old 09-13-2010, 11:16 AM
lindaincolorado lindaincolorado is online now
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Hi again georgiapug, because you are not yet 65 I assume you are on disability. It sounds to me that 0485 and I have the same situation even tho she or he's in WI and I'm in CO.
What your Humana man said does not make sense. Medicare would be your primary, Humana your secondary insurance and as a secondary, as I understand it, would pick up the 20%.

I would call back, ask to speak to a supervisor at Humana. If you do not get a good answer is it possible for you to drop Humana and pick up a better secondary insurance ?

Good luck
Linda
 

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