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How do you afford medications, therapy, and other ALS care?
Let’s face it, ALS is expensive! To complicate matters even more, needs can change suddenly.
Does your insurance cover most of your ALS-related expenses? Have you been able to get the financial support needed to pay for your care? Have you benefited from personal fundraising activities, grants, or other resources focusing on ALS?
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6 Replies
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I recently started a Go Fund me campaign! It was a hard decision to make. It came down to fighting for the treatment I need. I’m one of the lucky ones that is a candidate for QALSody and it has been a game changer for me. My breathing score went from 27 (7/2023), to (last week) 63. The QALSody has stopped the progression of ALS in most of my body, except my throat. Apparently they are seeing this in some other patients too. I am grateful and I am not complaining. I know most pALS don’t have this opportunity. My doctors are the best in the world. I truly believe that and they have been a big part of the research identifying biomarkers for ALS and developing QALSody. My team thinks that if I were able to go on a 21 day treatment cycle instead of the 28 cycle, my throat would improve. Right now my voice is hoarse, and at times I have difficulty swallowing. Typical for ALS, but still a struggle. When it is colder outside, these challenges increase. At this rate I may have to go on disability at the end of the school year, something I’m desperately trying to avoid. I love working, my career and the students and staff. Working is great for my mental health, and covers my bills. I take a lot of pride in being independent and we know that will not always be an option. I see it slowly shifting and It’s a challenge I’m trying to take on with grace and gratitude! My insurance will only cover the treatments every 28 days, and that leaves 3 treatments a year I have to pay for out of pocket….a Cool $15K+ each. Yes, fifteen thousand dollars plus a treatment. Between my already existing medical bills, and recovering from several hurricanes, my savings is depleted. I researched grants and other ways for assistance and it seemed like fundraising might help. To be honest, I don’t like asking for help and this is a humbling experience. Can anyone share their stories?
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I take riluzole and Radicava. I was lucky to find a non profit that has given me grants the last couple of years. Plus upon the first month of every year my insurance catastrophic portion kicks in. So my out of pocket cost that should of been $8,000.00 went down to about $1,250.00 for the entire year.
My insurance company paid right at $30,000.00 for the first year . Second year was about $26,000.00 and this years if it plays out looks like it’s going to be about $21,000.00.
My monthly premium is zero dollars. It started with a dollar amount (don’t remember the amount) then progressed to zero after seven years.
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Thank you Timmy! This is great information.
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ALS News today has an article on getting help for pALS. Financial assistance at Hopewell can help big time with medications, and there are others that will help in many different ways. You just have to spend time and be persistent because they get busy. I AM ALS is also a good place to get direction; they assign a counselor for pALS and help find funding as well. Never quit!! When the system seems to have let your stuff fall through the cracks, double up and find the answers. The sqeeky wheel gets the grease!!
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You are SO right Johnny5! The information is out there, the help is out there — just don’t give up looking. We have to be our own advocate … we PALS can always provide support and encouragement, and valuable tips like yours.
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Thank you Johnny5. I did register with Healthwell. I have been combing the internet for years trying to keep up with foundations and other organizations that help pALS. I think listing them on the forums from time to time is helpful too.
Amanda
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