Insurance (NY state open enrollment time!)

[EllieR00]

Hi everyone,

I hope this is the right place to post this - my mom is newly-ish diagnosed (June 2024) with FALS. Her doctor has prescribed Riluzole and Radicava.
The thing is, her insurance covers absolutely none of Radicava, leaving us with $16,000/month out of pocket costs (starting dose was $24,000). Obviously this is horrible. She is not employed and we're looking at getting disability insurance, but haven't yet. I'm wondering - she currently has Emblem Health in NY and they are not helpful at all. Does anybody know of insurance companies or policies that are helpful with coverage of this drug/ALS care in general, specifically NY state plans on the open market. Sorry if this isn't allowed on the forum! We're just trying to figure things out as best as we can.

Thank you so much!

 

[Nikki J]

It is fine to post

She currently has an ACA plan?

Does the NY ACA site have a place you can enter meds and doctors when you search? I know Massachusetts does. You can also look up formularies for each plan

Radicava coverage is often tricky. Did your neurologist file an appeal? Also if this isn’t a government plan like medicare MT Pharma the drug manufacturer will usually provide assistance. Did you apply?

 

[EllieR00]

Thank you so much!

Yes, she does. They've got a place where you can enter doctors but unfortunately not meds

We've tried everything, I think her neurologist filed an appeal, but I'll check again. It isn't a government plan, so theoretically they would BUT the exception to that is if the insurance covers none of it, the manufacturer won't provide assistance. So, if the insurance would cover even like $1 we would be eligible for their assistance, but they don't so we're not. We tried applying and that's what we were told, unfortunately. Thank you so much!

 

[Marieb425]

The one other thing I would recommend is filing a complaint - in WA state that is with the insurance commissioner, not sure what it is for NY but you can look it up and see. I’ve had to do it twice - once when the insurance company refused to cover Radicava ORS and once when they refused to cover his formula. Both times it was fixed from doing this process - I think that they sometimes say no/reject things because it’s easier or cheaper for them. But then if you fight back they have to give in, because they’re wrong.

 

[Nikki J]

That is too bad re mt pharma. You can look up formularies for the various companies that offer insurance in her area. It is tedious but they are somewhere on their websites. You can also talk to friends and see if they have any insurance that seems more generous and check them first.

 

[lgelb]

Is she planning to file for Medicare, for which she is automatically eligible if she has enough work credits? Then you would enter all her drugs and docs on Medicare.gov to help find a Medicare Advantage or supplement + Part D plan.

I doubt she will be underwritten for new disability insurance at this point, other than a nominal amount against which ALS would be a pre-existing condition.

 

[EllieR00]

Unfortunately she hasn't worked in a while due to raising 3 kids (she's incredible) so after some calls with the Medicare people as well as the Social Security Disability people, we have learned that that is not an option for her.
The ACA options in our area have 2 that seem at all decent, one of which she already has, and the other which seems maybe slightlyyyy better, but which lists Radicava in their formulary as a tier 3 drug. If it is helpful, the one she has now is Emblem and the one we're looking at is United Healthcare. UHC has higher costs in general though.
I wish there was a better option, but alas it seems there isn't.

 

[lgelb]

One question is what she will pay for Radicava as a Tier 3 drug and how much of a deductible applies to UHC (drugs, health services) vs. Emblem.

All else being equal, non-profit plans like Emblem are preferred, but their CEO is decidedly a for-profit mogul, so it's really more about a regional plan vs. a national network. UHC tends to contract with most major facilities, but Emblem may as well. An easy way to compare is to check online -- see if everyone you want to see/use, and a couple of options past them, including specific hospitals, DME firms, and pharmacies, is in network.

 

[KimT]

Call the Healthwell foundation. They have grants in the amount of $15,000 for ALS. The fund is open. Representatives can help you over the phone.

 

[lisa g]

With the Healthwell Foundation you can apply for one of 2 different grants. One would be for help with paying co-pays for medication and the other type would be for insurance co-pay reimbursement. Either one is a $15,000 grant, you would need to decide which grant would work for you.

Like Kim said, the fund is currently open for applications but could close any time for new enrollments once the funds are allocated to recipients. I've used both types of grants and currently use it for insurance premium reimbursement.

 

[EllieR00]

Thank you so much everyone for all of your help and advice. it is so so appreciated. I would respond more often but I can't post more than once every few days! I think maybe we're leaning towards UHC, maybe I can call them and find out their pricing for tier 3 formularies? And will definitely call Healthwell, thank you.

 

[lgelb]

The pricing for each tier should be in the PDF benefits listing, in a table, along with all the other copays, like $25 for a PCP visit or whatever. But also certainly you can call.