Private Insurance, Medicare, so much confusion

[Hmy1972]

Hello,

I tried to search to see if I could look up this question without having to post, but I couldn't find anything similar.

I have reached out to my Kentucky State Department of Insurance for assistance, but have not heard back from them.

Scenario:
I was diagnosed 9/18/23, I am working still, have my own private insurance and will work until the end of the year full-time at that point I am going to reduce my hours to 15 hours a week (if I am able to tolerate it).

Beginning January 2024 I will no longer be eligible for insurance through my employer due to reduction in hours.

At that point what is my best option?

My husband has insurance through his company that I can go on beginning January 2024. Should I do this?
Or should I apply for Disability and Medicare?

Or do I do both?

Thank you so much for your help. I feel so overwhelmed making even the simplest decisions.

 

[Nikki J]

It is a complicated question. For ssdi you essentially have to stop working technically you can earn a little over 1000 a month while on it but getting on it working at all usually results in an immediate denial which then leads to appeals and a big mess. Stop then apply

Your husband’s insurance could work with medicare as it would generally cover the coinsurance of medicare. Absent that you would need a supplement which may be either pricey or unobtainable when under 65. Rules vary by state and I don’t know Kentucky laws

Another issue is the cost of radicava and relyvrio if you take either or both. The waiving of copays and the companies paying for your drugs can’t happen with medicare due to rules. You might be better off on your husband’s insurance though I think if you don’t get medicare part d and have your prescription insurance through your husband that would work

Are you trying to contact Kentucky shine counselors? They would be able to help with some of this

 

[Buglaw]

we did private on my wife’s because of the cost of relyvrio and radicava. It was significantly cheaper than going on Medicare.

 

[lgelb]

As to what insurance would be primary, when there is other coverage, Medicare is usually primary, but is usually secondary if:

• You are >/= 65 and receive insurance from your or your spouse’s group health plan, from a company with >/=20 employees across itself or the larger group insured, or
• You are < 65 with a disability such as ALS, but not ESRD, and receive primary coverage from you or your spouse’s employer, which has >/=100 employees.

See https://www.medicare.gov/sites/defa...lth-benefits-your-guide-to-who-pays-first.pdf

As this guide notes, who pays first isn't set in stone, because a plan may "opt out" of being part of a group in a way that negates the provisions above.

Your husband's insurance plan contract may also specify other circumstances, including Medicare eligibility, in which his plan has to be secondary.

Bottom line: you should find out what your options are in re his plan before deciding anything. Medicare is not the sole decider in terms of which plan is primary. And you can also check out the formulary status/prior authorization criteria of the R drugs while you are looking into his plan.

Also may or may not apply: If his employer is small enough not to be covered by COBRA, if anything happens to his coverage, Medicare would become primary.

Also, though it's possible that you would be eligible for mfr assistance programs while on a commercial plan and not Part D, they also have the option to specify "when not eligible for" and/or means test, and are more likely to do so in the coming years.

These are just some of the considerations and SSDI is a whole other one. States differ, so I agree you also need KY- specific advice.

 

[steve613]

We took medicare only to discover that Radicava copays were $7000 a month without the searchlight foundation support. We were able to get back on blue cross and the copay was again covered by the foundation.

 

[Honey2468]

I think every scenario is different (as you will hear often with ALS) so I will share my families for some context!
My mother is 58 w/ bulbar onset and uses private insurance and this is more benifical for her than Medicare. At this time her need for DME is not very high so the lack of coverage in that area isn’t too much of an issue. She is independent.
So for her… medicine is the key piece.
Relyvrio and Radicava and Nuedexta which she is in on are covered by her private insurance, and b/c she has private insurance she’s also able to utilize copay assistance from the drug manufacturers which is HUGE! Additionally, she utilized a $15,000 HealthWell grant for medicine.
Her annual out of pocket max is around $8,000 and all the medicine is totally covered once she hits that OOP max… which the grant can actually be applied to (this may vary by insurance I’m not sure)
So basically we’re able to budget for just her monthly insurance payment right now given that we reach the OOP max pretty much immediately.

I hope that made sense - insurance was super overwhelming for us when my mom was first diagnosed, so I am sorry your dealing with this right now.

 

[lgelb]

Off the top, I would never recommend Medicare as a primary plan in place of good commercial PPO coverage that counts as creditable coverage to avoid any late enrollment penalty, so long as the in-network DMEs of the commercial plan include the best provider in your area and the commercial plan's formulary meets your needs or is subject to augmentation by mfr assistance programs as you mention.

DME is ultimately relevant to every PALS and you cannot change coverage in a flash. So you want to look at both drug coverage and DME coverage, along with "regular" care for clinic visits and testing, for ALS and everything else, as well as in what months and under what circumstances your plan can (or must, due to employment) be changed. Also, many payors' plan designs are changing in some respects for 2024.