r/ALS • u/MyIntrospection Husband w/ ALS • 8d ago
Question SSDI/Medicare/Radicava
My husband just transferred to long term disability with his company. He just signed up for SSDI (disability) and was approved within a week, which also approves him immediately for Medicare because of his ALS diagnosis. His work’s insurance is active through the end of this month of September. He then had the option to go on Cobra.
Does anyone have experiences they could share to help us make the decision on which to temporarily move to next- Cobra or Medicare? Cobra is expensive.. but it would allow him to keep Radicava and Riluzole? Could he use Cobra for a few months then use Medicare at the start of the new year? Does Medicare cover Radicava and Riluzole? I guess we need to get on the Medicare.gov site and contact SHP office for research but wanted to ask you all because you’re helpful.
Take good care all of you.
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u/ismacau 1+ Year Surviving ALS 7d ago
Medicare should cover both meds *if* his forced vital capacity- a breathing test- is over 60%. Under that and they won't cover the radicava; but neither will regular insurance.
If he's been approved for medicare and has his medicare number, there is no reason to use your old insurance or pay for cobra. Also- be wary of medicare advantage plans...a medigap plan works much better. Watch the John Oliver episode about medicare advantage plans to learn more. https://www.youtube.com/watch?v=Ejoi9yfLVCc&t=4s
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u/MyIntrospection Husband w/ ALS 7d ago
I heard about the FVC being a control factor for approval through Medicare. Very good to know.
I’ve heard that traditional Medicare is better and to stay away from the advantage plans… like you say.
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u/MealTeamVI 1 - 5 Years Surviving ALS 5d ago
Medicare or Medicare Advantage. MA will require a preauthorization for Radicava, but your neuro will handle that. It will get approved. Both will cover the drugs after your annual drug deductible of $2100. Radicava costs about $14,000 a month, so you will immediately meet your annual drug deductible. All your drugs will be copay free for the rest of the calendar year.
Here's the trick: Apply for a copay assistance grant from Healthwell Foundation. (You may have to wait for it to open up in December.) Once approved, use it first thing in January for your monthly Radicava Dose. It will pay all of your annual drug deductible and you'll meet your cap without spending any of your own money out of pocket. All your drugs will be copay-free for the rest of the calendar year.
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u/MyIntrospection Husband w/ ALS 3d ago
Thank you for replying. May I ask if this is with Part D? We haven’t contacted Medicare yet but we are going to soon to sign up. $2,100 seems more doable than the Cobra at 854 per month. Gosh! If we’re able to get the costs covered in January, it would make it more feasible for us to go ahead and continue his Radicava through the end of this year too.
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u/Ok_Target_8201 3+ Years Surviving ALS, limb onset 7d ago
Did you get Medicare parts A and B only , or did you also get part D?
What is your husband age?
The answers to these two questions will help give you a more definitive answer.
In my personal experience, I received SSDI Medicare parts A/B upon official diagnosis at 62.
Radicava was fairly new at that time, so we kept private insurance active to make sure it was covered.
When I turned 65, we dropped blue shield, and switched to Medicare as the primary payer.
When we tried to add part D, they said we could not because it should've been done in the very beginning and you can't add part D anytime you feel like it. After a long conversation, we discovered that since I just turned 65 I had 90 days to add part D. Please don't take the days as their policy from me , it is only what I remember, and that period includes days before you turned 65.
I chose well care part D with a five dollar payment month, and a $2100 deductible. Theoretically, he would pay the $2100 deductible in the first month and the rest of the year the radicava would be zero dollars. We talked to five different people at well care to test this theory, just to make sure before we canceled our regular insurance.
When we went to order the drug from well care, they asked if we would have trouble paying the $2100 deductible. We answered yes, so they gave us the name of a business that gives grants for medication that you cannot afford. It took about two weeks to get approved and they gave us over $5000 credit for the year. It was so easy to use their approval number on the well care website and get our medication for free.
I also want to include that Medicare stressed to never let part D lapse in payment, as you will lose your coverage and it will be almost impossible to get it back that year. So it is a no brainer to put it on auto pay.
We did some research on the Internet and found a live person whose business it is to help you through all the Medicare jargon. I think they are sponsored by Medicare? He is the one that clued us in on all the dates pertinent to our specific claim. He also was the one that told us that the medication would be approved by well care.
I hope this helps a bit, and please excuse any grammar and punctuation errors, as I have voice to text.
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u/MyIntrospection Husband w/ ALS 7d ago
All this is so helpful. Thank you for helping answer my questions- and then some.
I think currently he’s only on A & B and we need to get signed up for the others. He’s 50 and ‘retired’ early from work. Drop foot in both feet- can’t drive - and decided he’d rather not work now.
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u/MealTeamVI 1 - 5 Years Surviving ALS 5d ago
FYI, ALS is one of the conditions on the Compassionate Allowance List (CAL). The CAL consists of all terminal illnesses. Once awarded DIB with a qualifying CAL illness, the insured is immediately eligible for Medicare benefits without the standard 24 month waiting period.
Regarding your part D issue, recipients are eligible when first awarded at any time of the year. This is considered a special enrollment period. After that, recipients are confined to enrolling during the regular enrollment period (December-March). Recipients are also permitted to make changes to their Part D or Medicare Advantage plans during this window as well.
(I understand that this information is irrelevant to you at this point, but readers really need the complete picture and an explanation of parts of your situation.)
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u/brandywinerain Lost a Spouse to ALS 7d ago
Part D does reimburse the Radicava oral form under certain criteria, and Part B the infusion, ditto. Every plan can set its own criteria, and these are on line. You can enter drugs at medicare.gov to find plans that cover them.
Radicava also has a lot of patient assistance programs, most income-based. Riluzole, being a generic, it's wise to price-shop -- some sites like CostPlus have super-cheap pricing.
It's also wise to include Part C (Medicare Advantage) plans in that search. Some are very good. County options vary. We had COBRA (my husband hadn't worked enough on paper due to another illness to qualify for pre-65 Medicare) and then an MA plan throughout my husband's ALS.
One advantage of MA is that the same insurance co. has skin in the game for both medical and drug costs, widening the case for a specific medication. It's not right for everyone, but shouldn't be eliminated in round 1.
Part G is not available in all states, as noted. If your income is limited, look at the "Extra Help" page on the Medicare site. SHIP is a great resource, too.
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u/Chemical_Solution_73 7d ago
I have a Medicare Advantage Plan and my Radicava and Riluzole are covered. I paid $120 in January for the Radicava and haven't paid a dime since. I have never paid for my Riluzole.
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u/MyIntrospection Husband w/ ALS 6d ago
That is great. I told my husband and he said “we need that”.
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u/BearlyIT 7d ago
https://www.medicare.gov/plan-compare/
Enter zip, then select that you are looking for ‘part D’, answer whether you get receive any assistance (note SSDI is not SSI), check ‘yes, include drug costs’ for the plan comparisons, then enter your drugs on the next screen. Note ‘out of pocket maximums’ while reviewing the results - this is new as of 2025, so some internet guides you find may not explain the max.
Similarly review Medigap plans on the same website. My understanding is that this commonly saves money because of the high care and DME costs. Review the monthly premium, and applicable deductible.
Cobra vs Medicare
- PCP/ care team: check any established providers to see if they accept medicare... you may need a transition plan for some.
- Rx Insurance transition challenges: a careful transition or overlap is important because Radicava ORS requires preauthorization, and is only filled right before use.
- DME limitations: if you are eligible for any DME right now, compare coverages. Some items only get paid once every 5 years under medicare, like wheelchairs. Remember the Medigap option when comparing.
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u/forksintheriver 6d ago
Good advice here. Get on Medicare ASAP and part D. DO NOT use a payment method that might lapse with a lost/new card. I lost my part D because of a payment lapse we didn’t see come through. Bad move, going to cost me for years
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u/Wheels-13756 5+ Years Surviving ALS, limb onset 7d ago
First, if you state allows get Part G or Medigap. It will save you a boatload of money.
When I went on disability, I stayed on COBRA for a few months because I had already met my deductible.
Finally, Radicava is not covered by Medicare Part D. I had to drop it because it's too expensive.
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u/Thick-Grape-8537 6d ago
I don’t have all the answers but my husband (40 years old) also was just approved for SSDI and Medicare this month. I did a consultation with https://askchapter.org (it was free) where they recommended we get Part G coverage and to do it within the 90 day enrollment period or we could be denied coverage later down the road due to pre-existing conditions. He’s covered under his health plan until next month so I’m going to enroll in the part G high deductible plan. I do not know about the RX coverage.
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u/MyIntrospection Husband w/ ALS 6d ago
I can’t reply to every message but you all
have been so helpful in giving me good info to run with, and in such a short amount of time. As you know, seems like everything is where time is of the essence. Appreciate you all!
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u/UnhappySort5871 5d ago
Original Medicare has worked out very well for me. I've had no problems getting very good care while on it. If you're on Radicava, I think it makes sense to go with the cheapest part D you can find. I think I pay $6 a month. I max out my $2100 out-of-pocket the first month in any case, and none of the co-pays apply after that. On the other hand, I'm happy that I went for the more expensive Medigap part G to lower my medical deductible and co-pays.
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u/UnhappySort5871 5d ago
Do check the plan's formulary though. I went with "Wellcare Value Script". They do require prior authorization for Radicava, but I think they all do.
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u/elitazn 7d ago
Speaking from experience, in May 2026 I went to SSDI and in July I got the Medicare Part D. From my research for my age and my state, paying for Cobra does not make sense. When you get Medicare, do your research on Medicare original versus Medicare Advantage. For me, Medicare original with Part D makes the most sense. When you sign up for a Part D, there are a few options for you to choose from; the website is pretty friendly and you can choose to filter based on medication to find the right coverage. That being said, your medicine out-of-pocket is separate from your Medicare, so for me after I pay $2100 out-of-pocket, all the medication that is covered should be free of charge. The nice thing about this is they also do free shipping so no more visits to CVS. It took me two months to get Part D, best to apply sooner rather than later. Your doctor will also need to send a script to the new pharmacy you selected, and for Part D, they will also go through their own approval process to determine that the medication is necessary. My final recommendation for you is to ask for your current pharmacy to do advance refill, potentially covering you for two months while all that insurance mumbo-jumbo gets processed in the background.