Diagnosed with ALS

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alissamw

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PALS
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US
Hi!
I was diagnosed with a motor neuron disease in July 2022 and ALS in September. I live in nj with my husband and 5 dogs 🐕
I am 41. I had been a real active person. Now, I struggle to walk with 2 afos and a cane. My symptoms started in August 2021. Fasciculations then cramping then falling and now weakness. I'm waiting for the results of genetic testing
I am currently working and have dropped down from 40 hours to 32. I have private insurance right now. Does anyone know if I should attempt to keep this insurance and pay for cobra or instead, get on Medicare?
My copay for riluzole is 15$. I am in the process of getting radicava. I am waiting on a prior authorization before I can find out the price per month.
Also, does anyone know how big a walk- in shower has to be to accommodate a wheelchair.?
 

Nikki J

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Hi sorry you have to join us. Since you are in NJ contact the Joan Dancy foundation if you have not already. Also maybe Bridging voice to ask about starting voice banking

insurance is complicated. If you stop work you will qualify for ssdi and medicare ( assuming you have enough credits from work). Whether medicare without cobra is right will require some research from you. Cobra is usually expensive. Medicare part a is usually free and part b is 170 and change a month it will slightly decrease this year BUT you need a supplement and you would need to find out the costs. Some states allow the companies to charge more if you are under 65. The supplement pays the 20% percent of doctor visits tests and equipment that part b doesn’t. But drug coverage is separate and in my experience not as good as my prior insurance riluzole is definitely more. Radicava ors if covered at all by your current plan will probably be better. Relyvrio is approved and coming next month. If you have commercial insurance the company has pledged no copay. They are not allowed to do that with medicare. You could also look into medicare advantage plans instead of a supplement but you need to watch for limited networks. They may or may not have a drug plan included if not you need part d
 

lgelb

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A sad welcome, Alissa. We will support you however we can.

You can go to medicare.gov to compare supplement plans, Part D (drug) plans, and Medicare Advantage plans in your zip code. Most Medicare Advantage (Part C) plans include a drug plan. If you end up on Medicare, SHIP in NJ has counselors that can help you evaluate your different plan options.

Best,
Laurie
 

Marieb425

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Hi Alissa, my husband is 40 and was just diagnosed end of august as well. He’s still working and is staying on private insurance for now. We had some trouble getting his insurance (Cigna) to approve the Radicava ORS and we did have to file a complaint with the state insurance commissioner office after they denied it for no reason. I’m not sure if it helped, but they also did a meeting with his dr and the medicine is approved now, although we still don’t know what the monthly cost is.

The Radicava company gives you a $7500 benefit per year so the first two months have been covered and sent to us without any charge. We’ll see what the cost ends up being on month 3. He has 80% prescription coverage - our question has also been will Cigna just pay when we hit the out of pocket max but we don’t know, yet.

Nikki, could you point me to the news that Relyvrio isn’t going to charge a copay for private insurance holders? That would be GREAT news.

I’ve found this forum a wonderful resource and everyone is very helpful and kind.

Best,

Marie
 

Nikki J

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marie they said it on their webinar. It is probably on their website. My clinic nurse said it as well ( mgh)

it seems like wanting radicava ors and or relyvrio might change the calculus on the medicare / cobra decision. For me when my only med was riluzole medicare was still better even though riluzole was more expensive on medicare. But with relyvrio if amylyx waives the copay ( and they also said of there were significant delays in getting commercial insurance to approve relyvrio they would send up to two months free) that changes things. I am virtually certain the 7500 of assistance for Radicava ors is only for commercial insurance too

people should always research and run numbers to see what works and how relyvrio will work ( if at all) with medicare is still to be seen
 

Marieb425

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Thank you Nikki for the additional information.
 

alissamw

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Oct 27, 2022
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09/2022
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Thank you all for your kind words and good direction. It's been a little frustrating fighting for insurance coverage. I vacillate between staying in the game and just wanting to quit being on any medication at all. So thank you for all of the resources mentioned
 

MJT

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Hi Alissa, I am very sorry to hear about your diagnosis. You will find lots of good information here.

Our shower is 38 1/2"x55" with a door opening of 29"
We purchased this roll-in shower chair (the type was recommended to us by our OT):see below

 

MJT

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Nikki-not sure if posting links is allowed as I just realized I haven't seen any? Anyway-moderate me if necessary! : )
 

Nikki J

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Commercial links are not allowed nor are those that lead to donate buttons. We ask that in cases like yours you say something like got on amazon search

Caspian Professional Mobile Shower/Commode Chair-Padded​


mjt it doesn’t look like it reclines or tilts?. Recline was absolutely necessary for my sister. ( I have no memory of the specific brand of chair
 

ReginaS

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The Gleason Foundation was extremely helpful. They helped us figure out a shower chair that fit into our not very big shower (it reclined and had head, foot and arm rests) and sent it to us. I wonder if they would also advise on shower spaces as they know so much about shower chairs/recliners
 

Tomswife

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Thank you for this post. My next step is to figure out shower DME.
 

MupstateNY

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Regina, Oh, I didn't know Gleason did anything besides fund voice banking. I will take a second look. Thanks.
 

MupstateNY

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Alissa,

I am dual eligible, Medicare and Medicaid. This is just a coincidence. My husband and I were both laid off right before COVID. I was only able to find a very part-time job -- max 10 hours per week -- and my husband has done a bit of adjunct teaching, which doesn't pay very well. It's hard to get hired at a certain age. I needed to work from home due to back pain, and my husband was in a very narrow field.

You can look up the maximum family income for a family of 2 (the dogs don't count, sadly), for Medicaid eligibility in your state, and try to project whether you guys would qualify. I think that could help you decide.

Also, if you use a pharmacy that is part of a hospital, you can apply for patient financial aid. This is generally a sliding scale, and you would get some percentage discount on your care, labs, meds, etc.

In my state, there are Health Navigators who help people figure out these things (for free). Hopefully NJ has something similar.
 
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