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What advice do you have for pALS applying for Social Security Disability?
As I’ve shared, I’m on QALSody. My current regimen is dosing every 28 days. My medical team is recommending a 21-day regimen. My insurance will not pay for the additional 3 treatments per year.
However, others have been able to get the 21-day regimen on Medicare. My medical team is also recommending that I go on disability.
Are you on Social Security Disability? What was the application process like? Was your case expedited because of your ALS diagnosis? What tips and information should a pALS know before applying for Social Security Disability?
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5 Replies
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Hi, Amanda,
I applied for SSDI little over 2 weeks ago and got approved within a week including Medicare . It was quick because ALS. Since I am on state leave of absence benefit for 2 months, social security office able to pull additional info they needed so i didn’t need to go to local SS office. I am also on Qalsody patient and found your posts here very helpful.
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Thank you! I’m glad it was an easy process.
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I found it was easy — took a copy of my medical file containing my diagnosis to the SS office. I was approved on that day.
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Hi Amanda,
I have Medicare and a Humana Medicare advantage policy with $0 monthly premium. It is paying for the Tofersen treatments. I didn’t need any other Medicare supplemental policies.
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Hi Amanda,
When I applied for social security, it seemed to be taking a while to get approval but then someone from the ALS Association advised me to make sure the social security administrator knew my application was a TERI acct. I did and I was approved within a week.
I believe the social security status will expedite your medicare eligibility. I would think that and the right medicare supplement would go a long way in helping you with the drug costs. Getting the right supplement is extremely important.
That was 4 years ago so things might have changed. And, if you’re still working and want to keep working that might make a difference as well so do whatever you have to do to get a meeting with the social security administration and get comfortable with the regulations before you make your decision.
Best of Luck,
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