Trying to make a decision on a drug plan with Medicare. All the drugs to treat MS are the high priced specialty drugs. I am looking specifically at tecfidera. Was able to find some plans with tecfidera on the formulary but of course the copay is about 25%-33% of the total cost. I understand that there are charity organizations that can assist with the copay. Any one out there getting help once on Medicare? So many things to consider.
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1. I found a previous thread with a similar question. Perhaps there are some ideas on here that could help:
http://www.msworld.org/forum/showthr...ight=resources
The following posts in that thread might be the most helpful:Lol -- Oops. I just noticed that this thread was also started by you, but last year. You've probably looked into those options already.
#4: Try contacting Biogen or your doctor for ideas.
#6: Suggests some co-pay assistance programs.
2. I'd also suggest that calling your local NMSS for ideas is an option. They might be able to refer you somewhere. Ot they might know of the best Medicare drug plan to suggest for you.
3. MS News and Views has an MS Navigator Social Work Helpline.
Call 1 (888) 871-1664 to see if they have some referrals for you.
4. Here is the Resource Center at MSWorld. Maybe there are other agencies that could assist you. http://resourcecenter.msworld.org/ed.../ms-resources/
And another list of resources here: http://www.msworld.org/forum/showthread.php?121361-Resources&p=1370692#post1370692Last edited by Mamabug; 11-29-2016, 11:38 AM.~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Medicare Part D
Thanks for your response Mamabug. I am looking into all theses sites and will be speaking with my doctor in December. It's crazy to think that copays could be over $1000.00 per month. I have been so fortunate for the past few years to pay nothing at all for my medication but all this changes once a patient enrolls in Medicare. I will share any information with others once I learn anything else.
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Originally posted by rsinger View PostThanks for your response Mamabug. I am looking into all theses sites and will be speaking with my doctor in December. It's crazy to think that copays could be over $1000.00 per month. I have been so fortunate for the past few years to pay nothing at all for my medication but all this changes once a patient enrolls in Medicare. I will share any information with others once I learn anything else.~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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I'm also interested in any findings.
My understanding is that I'll be headed to Medicare next summer even though I'll be under 65 since I will have been 'ruled' disabled for 2 years (qualified for LTD & SSDI summer of 2015).
I have a lot to research and learn before making required decisions. oh boy!!
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Originally posted by pb909 View PostI'm also interested in any findings.
My understanding is that I'll be headed to Medicare next summer even though I'll be under 65 since I will have been 'ruled' disabled for 2 years (qualified for LTD & SSDI summer of 2015).
I have a lot to research and learn before making required decisions. oh boy!!~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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I was lucky enough to already be on SSDI when Medicare Pat D came out. And even luckier that it was many years before that fateful MS diagnosis. My mind was still very alert---even sharp. I looked at all of the plans to see which one offered the better deal. It was so much work looking through all the formularies and comparing plans to strategize penny for penny. Even before MS I had a pretty hefty list of expensive treatments.
Conclusion: I was going to hit the Coverage Gap no matter what and once I hit the Coverage Gap aka the donut hole, my co payments would be the same no matter which plan I chose. I could see the whole thing was calculated "rigged vis a computer model. Therefore I went with the lowest premium and $0 deductible.
I was with Cigna before and foolishly switched to AARP (which isn't AARP at all it is United Health Care). The switch was very difficult and I doubt I have saved anything in the long run. The service is also much much worse.
If I had it to do over again I would have stayed with Cigna and not moved an inch. Cigna also has its own specialty pharmacy. As far as I know, most MS drugs are covered by Medicare Part B not D.
For copayments, go to patient assistance program. Application over the phone, card sent out and ready to use just like a secondary insurance.
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Originally posted by Mamabug View PostYes; please do update us. I'm not very many years away from this dilemma myself. And I imagine there are others who have similar questions.
What experiences do others have?~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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I wonder if you called your local NMSS (National Multiple Sclerosis Society) office, if they could give you advice. A financial advisor/ financial planner might be able to help as well.
I'm hoping that, maybe, by that time (in 10 years, for me), that I may no longer need Copaxone other DMD's.~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Any updates?
I am researching this topic & not coming up with much.
I went in to medicare.gov to search plans--put in my drugs & voila! My monthly copay would be $3600 a month!
Looking in at the Ampyra copay assistance, their site specifically states that Medicare recipients are ineligible.
How do people afford their drugs or are they no longer on them at that point?
I have a call in to my dr's office for input.
Does anyone have further information? This has to be a common problem.
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The state of Kansas has SHICK volunteers. Senior health insurance counselling for Kansas. It is a government program. Locally, it can be accessed at my area senior center.
Perhaps your state or community has a similar program. Call your senior center, department on aging or department of children and families (DCF) to see if someone can point you in the right direction.~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Originally posted by Mamabug View PostThe state of Kansas has SHICK volunteers. Senior health insurance counselling for Kansas. It is a government program. Locally, it can be accessed at my area senior center.
Perhaps your state or community has a similar program. Call your senior center, department on aging or department of children and families (DCF) to see if someone can point you in the right direction.
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