Insurance recommendations

[Honey2468]

Hi CALS community.
I am new here. My mother is 58 with newly diagnosed bulbar onset ALS and even though my moms symptoms are not severe I moved back in with my parents to navigate this time.

*Hoping to learn which insurance companies cover the three Rs, and Nuedexta*

My mom has Kaiser in California but we are going to move to Nevada… both to get out of our two-story home and to be near more family.
My mom does not qualify for Medicaire regardless of diagnosis as she doesn’t reach the requirements for Social Security. She will have to remain in private insurance.
I have connected with the ALSA in NV and found a neurologist she will be seen by who accepts nearly all insurance. I am struggling to decide on one because I want to make sure her medicines will be covered and affordable.
Right now with Kaiser in CA, she has hit her deductible and OOP max, so all her prescriptions have been 100% covered these last few months which has been such a relief. One unfortunate thing is we have no DME coverage.
I think a bronze plan is going to be the best fit financially… but I’m not sure. I am looking at HealthPlan of Nevada by United, Anthem BCBS, Select Health l, and Ambetter from Silver Summit.

Open to feedback and suggestions. Thank you

 

[Tomswife]

I am sorry about your Mom's diagnosis. It is generous and loving of you to move in to help her.
The issue with these 3 Rs is they may be non formulary. I think you can request the formulary from whatever insurance you are considering.
Then you need to know the process for non formulary approval, eg prior authorization. The neurologist submits the PA request for each drug. Then you wait to see if approved Or denied. If approved, PALS pays whatever insurance determines. There is a long thread here about insurance for Relyvrio. I will post the name of the thread.

Paying for 3R’s

The 3R’s have been recommended, diagnosed about 3 weeks ago.i am still working full time and have decent insurance, Anthem. However, I don’t believe the R’s are covered. How do PALS afford these treatments?

www.alsforums.com

And there is another thread simply named "Relyvrio" that has insurance stories.

 

[Tomswife]

Since you are new....if you need advice from PALS and CALS you can post in the General thread. Only CALS can respond to you in the Current Caregivers thread.

 

[Nikki J]

I did move this to general which is probably the best place for factual questions. Discussions about the stresses of caregiving are good for Cals section

i think you are looking for an ACA plan. If so You should be able to see provider lists and formularies online. There is likely a search tool. Whether bronze is best will take some guesses and some math. It may be if her income is quite low silver is better because there are subsidies for copays and deductibles. ALS is going to be expensive. Without the silver lower copays if you use your insurance a lot and for expensive things it is usually a wash.

re drugs when you have an aca plan you usually do better than medicare. Relyvrio will pay your copay with commercial plans but can’t with medicare. Riluzole probably will be a reasonable copay on most plans. Radicava may be trickier but you should find something

 

[lgelb]

The Nevada Health Link site should enable you to enter your mom's drugs and see how they apply to each plan you are considering. In addition, you can find star ratings for the networks and plans.

Likely, she is better off in a major network where they can better spread out the cost of the R drugs and policies are more visible. That would be UHC or Anthem. But I would check out each, including the provider network (including hospitals and DME vendors), how many years in a row they have offered ACA plans in Nevada/your county, and how everything pencils out.

 

[steve613]

It’s important to realize that Radicava and relyvrio are expensive orphan drugs with high copays. However if you have commercial insurance (neither Medicare nor Medicaid) then the manufacturers offer copay support through foundations they fund. We enrolled in Medicare at the urging of the clinic social worker and our $0 copay IV Radicava was suddenly $3600 copay per month. Fortunately we were able to go back to commercial insurance.

 

[Honey2468]

Thanks all for your guidance!!!
I have found the HealthLink website isn’t totally accurate with which prescriptions are in each individual companies formularies. I’ve looked them up on their respective websites and other than Riluzole the others aren’t listed specifically…

I understand that most likely both Radicava and Relyvrio (along with Nuedexta most of the time) will need a special PA request.. which with our current insurance in CA has been approved thus far. I’m just nervous that these requests may be denied with our new insurance in NV, so I am hestitant to choose one. We will need to switch by July 1 so I have some time to do more digging.
I guess I more so am hoping to know if there are any insurance companies this community knows are tougher/easier to access these medications with.

 

[Cowboybob]

Once you’re diagnosed with ALS you are immediately eligible for Medicare!

My ALS association has provided me with so much free equipment so check out your local ALS association!

Get a referral from your primary doctor to get a wheelchair evaluation need to get this going immediatel.

if you run into money issues contact Team Gleason out of New Orleans they can assist.

Start planning early get a ramp installed, make sure you have a zero clearance shower if not contact Nuproducts out of California for a combination camode /shower chair.

Don’t be afraid to ask keep on asking.

I’m going on a year diagnosis with ALS the future scares the hell out of me but I can honestly say ALS association and Team Glesson wonderful.

 

[Nikki J]

Unfortunately not everyone is eligible for medicare. If you are under 65 you either need to qualify for ssdi or have government disability benefit and have paid into Medicare. For ssdi you need enough recent work credits. This is an issue for some ,especially women. My sister had plenty of credits but she had stayed home with her daughter and hadn’t gone back yet. It sounds like op has a similar issue

fwiw it is worth honey2468 my friend has a commercial ( work) united plan and they have refused relyvrio. They were also difficult about the wheelchair. Not all plans from united will be the same of course

 

[Honey2468]

Hi Nikki- you are exactly right, this is very similar to my moms situation with Medicare.
I am fortunate and thankful that my family can afford private insurance, but I am doing everything I can to make sure our costs can remain low by choosing the best insurance in our new state.
Does anyone think it’s worth calling the individual companies about their processes for Radicava/Relyvrio approval? I have not seen much online regarding this

 

[Nikki J]

what my neurologist told me was every single prescription they wrote for relyvrio and radicava required a PA and was initially denied and then they had to appeal. She said mostly the appeals were successful

 

[Cowboybob]

I’m not going to argue just check it out!

 

[lgelb]

Cowboy, if you are alluding to the fact that not all PALS are Medicare-eligible, Nikki is correct. My husband did not qualify until he turned 65 and even then he had to pay an extra premium due to lack of work credits owing to a separate hereditary condition.

The "R" drugs' requiring a prior auth is typical of expensive specialty drugs.

Yes, calling and asking about the coverage with a specific plan is possible but they are likely to tell you it is a case by case basis as they are trained not to promise anything. You can also look up their current PA criteria on their respective sites to see if your mom qualifies.

 

[Kim4Steve]

Hi all. I'm so grateful for everyone's participation in this discussion. My brother was approved for Radicava through his insurance at work, but now he has stopped working. He's applied for ssdi for bulbar onset als and will sign up for Medicare as soon as he can.

I'm kind of circling back around to Honey2468's original request about selecting the best plan to cover the 3 Rs. I thought you could find out what drugs are covered on Medicare part d plans before you enroll. But based on Igelb's response it doesn't sound like that's the case. Am I reading that correctly?

 

[lgelb]

Yes, you can find out the latest posted policy on any drug at the plan's web site (be sure to log in so your particular plan is being reflected or if you are just shopping, use the State/Medicare sites and the correct plan design, like HMO or PPO).

However, if the policy is under development or being revised, it won't be posted as yet. P&T Committees, who decide where a drug falls, meet only so often and sometimes a drug is not fully evaluated for months.

And since the two R drugs that are brand-only require prior authorization, you can see the criteria for approval but that does not guarantee any approval in your particular case.

Radicava is covered under Part B, not D, so you have to look at the copays and deductibles for Part B separately, in order to evaluate a plan that you are considering.

It is better if the drug is on formulary, even at a high tier or as a "specialty drug" than if it is non-formulary, where it is more difficult to get any coverage at all. However, even if "on formulary," copays can be quite high and the maximum out of pocket limit for drugs/services covered by Part D (like Relyvrio) and Part B (Radicava) is completely separate, so you pay both if you use drugs covered by both Parts.