[Shane Spiegelman]

I think the biggest delay was due to two factors.

1-Getting the cost for MRI testing on my insurance. In the end, they said $6,000-$21,000 out of pocket. They could not narrow it down due to having 4 test. I had to drop that insurance and secure a more agreeable cost.

2-Having respiratory onset ALS confused even specialist.

[Shane Spiegelman]

I brought the same thing up to my ALS team. I was told it is not ALS related.

It may be…. Never had this issue before.

Since we are often on a ventilator and have challenges breathing it is important.

Additionally, Hygiene becomes really important to us when the disease progresses . It’s one of the things we like to imagine we retain some control over.

Thanks for bringing the topic up.

[Shane Spiegelman]

Thanks for bringing this topic to discussion, Having respiratory ALS I am extremely interested in responses. I believe my very prominent Dr. claimed this would not help. Is there conflicting evidence that this works?

[Shane Spiegelman]

My experience was a circus for the first 3 months. Ra, Papa, Ra, Papa.

I made a journey map graphic, I can share on request.

Currently there are no huge issues with receiving the 3 R’s. Cost is $1,200 a month after out of pocket insurance maximum. I was not eligible for any foundation support.

Happy to talk with anyone on the following:

1. Going off self insurance and on to Medicare
2. The process for getting non formulary drugs paid for by Medicare
3. Supplement searching for Medicare Part D and G
4. The reduced cost for catastrophic drug coverage starting next year (Biden law)

Best to all pALS and cALS.

 

[Shane Spiegelman]

Heya.

Looks like not only your faith will get you through this. Your humor appears strong as your faith.

I was diagnosed with respiratory ALS in September and I am experiencing a lot of what you have mentioned. I am a wee bit younger, but have no regrets in a very fulfilling life.

Taking it day by day. There is an interesting side (s) to the process. Enjoy conversations with my peers.

Best to you.

 

[Shane Spiegelman]

Small moments that I used to speed through. Short conversations with loved ones like my grown son. Humor sparks the dialog.

Binge TV shows. Nothing can change my attitude like clicking on an episode of Homeland, Band of Brothers, The Bear or Ted Lasso.

Being a DJ. Music. Spotify allows you access to the world’s entire music catalog for $10 a month. Really, I spent more than that as a kid on 45’s! I make playlist on Spotify for different events or moods.

Friends. Small get togethers. Chat over a glass of wine (or 2) and a prepared meal with love. People give me energy.

Getting out. Sometimes it is frightening to plan. For example, getting to watch Baseball live. But each time I am reminded of the meaning of Joy.

 

 

[Shane Spiegelman]

Yes I’m lucky to have this problem. Thank you for sharing the Caring Bridge option.

 

[Shane Spiegelman]

After Covid, they opened up the parks! I tried to do my 2 mile run around a reservoir and found I was out of breath, about a quarter mile in. Wondering if this was just natural aging for a 61 year old.

My first breathing test in May 2021 showed I was in normal range.

Went to Puerto Vallarta and got food poisoning. My body broke out in fasciculations that where so bad I could not sleep.

Breathing got tougher and I could not walk over a quarter of a mile. Decided to work through the problem and get every test possible.

Diagnosed with respiratory ALS in late September 2022. Have never met anyone with this form of ALS.

My diagnosis was delayed in part due to the cost of 4 MRI’s on my insurance. They said it would cost me out of pocket between $5,000- $20,000 depending on the Dr’s coding and how they are scheduled. The Dr. said “we just want to rule everything out”.

I decided to upgrade my insurance.

On the 3 R’s most of the time, and life has not changed dramatically since the ALS sentence was brought forward.  Still mobile. Have the best bad luck. Best to my PALS.

[Shane Spiegelman]

Insurance and Medication were my first concern. Here where some of my learnings that might help someone newly diagnosed.

1-Got put on disability and did not know they would knock me off my insurance.They say your eligible for Medicare with disability, nobody ever said you are put on it immediately. In fact,They backdated to the day I applied for disability.

2-ALS drugs are impossibly expensive. It might be worth the wait to settle on insurance, like Medicare before ordering. I changed insurance after starting my meds and my cost per month went up $44,000 (This was under my new insurance Medicare without Part D).

3-Once on Medicare I rushed to get Part B, D, G. Still had a gap in time and went off Meds for 30 days. I would suggest to be prepared to immediately apply for supplement parts of Medicare if that is the path for you. I planned on hiring one of the heavily advertised Medicare specialist, but they could not get me a zoom appointment for 45 days.

4-After being on Medicare for 30 days they dropped me. One of my services (Ventilator) was not updated and confused Medicare. Recommend to Update all Dr’s and Services if you change insurance and avoid wasting energy, and losing your sense of humor.

5-Discovered my out of pocket on Part D. Note that out of pocket amount $3,500 for me, does not include drug coverage considered ”catastrophic”. My insurance has me paying 5% of what the insurance companies are charged for Radicava and Relyvrio $1,250 a month. I think it may be to PALS benefit to know about the Biden bill passed and what it means to their cost. Next year insurance companies have to lower their out of pocket expenses for Medicare and there will no longer be charges for catastrophic drug coverage. For me this is a savings of about $16,000 a year. Clip from the NYT article below:
_________________________________________________________________
A kind of cap will take effect even sooner, in 2024. That’s when Medicare will eliminate the 5 percent co-pay that beneficiaries are responsible for once they pass the catastrophic expenditure threshold, effectively limiting out-of-pocket costs to about $3,250. The $2,000 cap takes hold the following year. Access to low-income subsidies will broaden, as well.

https://www.nytimes.com/2023/01/14/health/medicare-drug-prices.html?referringSource=articleShare

Best to all Pals.

[Shane Spiegelman]

After dealing with insurance and medication I focused on dealing with the news. My Learnings on how to tell friends and family about Diagnosis.

1-I decided to tell only close friends, that I was in regular contact with, pretty much immediately. I emailed them personally.  I didn’t want to offend anyone with unusual silence or communication patterns. I did mention the new ALS drugs for a thimble of hope.

Friends that I  see infrequently can wait to find out about my state. No need to burden others, there is enough CrAzY in the world for people to make their way through.

Facebook has a different camera angle. Everything is normal.

2-I enlisted my brother who is stoic, to help me tell friends that I could not face this conversation with. I’m AOK with ALS diagnosis. I am pretty much George Bailey at the end of It’s a Wonderful Life.

What I cannot handle is having friends and family crying. It makes me break down and I become speechless.

My brother broke the ice. He made some in person visits to a lifelong friend, and my son who came home from college.  It was really a blessing.

Bless to all PALS. Be Here Now.

[Shane Spiegelman]

Good work!

[Shane Spiegelman]

I want to communicate 2 things.

I use Blue Shield/Medicare D

My cost is a one time out of pocket per year $3,500 and then $1,016 a month. The first payment met the deductible allowed by a new law from Biden. They still can charge 5% Of their cost each month to the patient.

In 2024 they are reducing the out of pocket maximum 50%. Additionally, they are doing away with the 5% monthly fees. Unless congress tries to overhaul the law.

Best.

https://www.nytimes.com/2023/01/14/health/medicare-drug-prices.html

 

 

 

[Shane Spiegelman]

Hello Mark,

Yes, that is one of the many mental gymnastics we have to go through with this dis-ease. Is the medication making my symptoms more pronounced or is it the progress of ALS? Dr’s are probably correct in that ALS effects everyone differently. I am going to run my own test in stopping part of my treatment if weakness occurs to try and figure out which drug is causing the issue. So far this weakness symptom has been off and on, so I am sailing ahead taking the 3 r’s. Best to you.

[Shane Spiegelman]

I was given a name from my ALS Chapter for the manufacturer. I wrote the individual who let me know that they are not in that department (Financial aid). They referred me to the right department. Will see if there is any progress beyond thoughts and prayers.

 

Best.

[Shane Spiegelman]

Same for me.

[Shane Spiegelman]

Hello,

I was diagnosed the same time as your husband. I chose Plan d with Medicare Blue Shield, Enhanced. My understanding is once the insurance company pays out $7,000 the insured are on catastrophic insurance. The cost would be $3,500 for one month than ~$650 thereafter. This is my cost for each drug, Radicava and Relyvrio, because my first month was in December before the clock was reset.   So I will spend ~$22,000 in Y1. It’s really unfair and me and my wife have to change our lifestyle (put politely) so I can have the hope these drugs are suppose to provide. The income limits for financial support, set by the federal government, state government and grants are very unrealistic for ALS patients. I wish you and your husband the best and happy to report any new learnings on the cost of these drugs.

 

Best.

 

[Shane Spiegelman]

Sorry to hear your response to this drug. Did you feel stronger once you stopped taking the medication?

 

Best to you.