Medicare vs private insurance

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New member
Jan 17, 2024
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Hi All,

I'm looking at the day I would apply for ssd benefits, I am a city worker and can keep my city health insurance or go on Medicare. For those of you on Medicare, do you find Medicare with a supplemental insurance covers most of your ALS medical costs or are you still paying alot of money out of pocket. My city health benefits don't seem so good in regards to wheelchairs , ventilators and other DME. Just want to hear how others utilize Medicare . Thanks in advance.
You are just diagnosed? If so please change your forum interest to PALS. Thank you

I am sorry you are joining us. Medicare and a good supplement is usually good for dme. I have medicare the the Massachusetts equivalent to plan g. After my deductible so far everything has been covered though I do not need the really expensive things yet. But the process has been really easy.

A couple of caveats though. Do not apply for ssdi until you stop working being out of disability would be ok but actually working will result in an automatic denial and it will take time and energy to appeal.

The only issue is meds. This is where medicare is weaker. Unless you do medicare advantage you need a plan d. For me the copays for riluzole are much higher than my old plan. No plan in my zip covers radicava or relyvrio though it might be possible for my neuro to appeal but there would be copays probably high. If your city insurance counts as commercial/ private the makers of relyvrio will pay your copay for you. They can not for medicare or government plans.

You need to take time and decide. It may be depending on your clinical status you want your private insurance for now and then possibly switch to medicare when you start needing expensive dme. Not knowing your current condition or having a crystal ball for progression I don’t know how fast your needs will change.
I have not been diagnosed yet, I'm dealing with limb weakness and swallowing issues. I have an emg scheduled next week, the nuerologist isn't sure what's going on.
Would you mind elaborating on your symptoms? All four limbs as well as swallowing issues?
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I have just started my Medicare with supplement and part D. I believe you must sign up for Medicare A&B or suffer a penalty. I was on LTD for 6 months and Medicare was secondary to my employer plan. I didn’t pay anything during those months. If you have Medicare and don’t get part D drug plan, and later decide you want it, your penalty is for the rest of your life. This was in my information from Medicare.
You don’t have a penalty if you had creditable coverage ( like employer coverage). This is also true for part b which has late enrollment penalties. I know someone who worked into their 70s and was able to get partb and d without penalty because they had work insurance continuously since 65. But it turns out op is not even diagnosed so they are way ahead of themselves
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