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%.…[Read more]

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…[Read more]

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.

Same for me.

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…[Read more]

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

Best to you.