Is anyone else with cancer getting disability?

How does all this tie in to medical insurance, especially if you're under 65?

Except for 7 weeks of STD for Whipple recovery, I've been working full-time for 26 months since my initial PDAC diagnosis (18 months since Whipple, 13 months since recurrence was identified, 11 months since it was confirmed metastatic Stage-IV.)

I'm 60 and still working in part because I'm able (but limited somewhat) and need the income, but also because my employer is providing very good insurance.

I've read when you go on SSDI you "automatically qualify for Medicare after a 24-month waiting period from time benefits begin" but I'm not sure about medical coverage during a gap like that.

I assume I have enough work history to qualify for Medicare over Medicaid, but still wonder about the gap.

Another angle is if my wife goes back to work with a company that provides good insurance even if I'm not working, could I stay on her insurance or would I have to go to a government-run disability-based plan?

I'm also worried about the overall medical care options (i.e., specialists and clinical trials) under Medicare and how all the "donut holes" would affect cancer treatment. Medicare Advantage vs MediGap vs other options, denial for pre-existing conditions, etc.

I can cover my own dental/vision/hearing and most Rx stuff out of pocket if necessary (for now at least), but quality cancer care and Rx coverage are definite priorities.

When I first found out, I had cancer, my company had me on short term, then long-term insurance. When I was on long-term the insurance company, I had hired someone to get me on Social Security. It took a while, but was retroactive and I got a lump sum from Social Security disability. I had to pay back the insurance company for the months that Social Security covered. Pancreatic cancer is an automatic Social Security disability approval. My insurance company was New York life.

thawk,
Thank you for your reply. I assume SSDI figured the back pay from diagnosis date? Did they (long term insurance company) take from you the whole lump sum you received from SSDI backpay? (from diagnosis date?)
If SSDI paid a lump sum from the diagnosis date, then were you able to keep the amount that SSDI paid out for the first 6 months of your cancer? (in which you received short term disability?). I guess the real questions are, did you have to pay back the full backpay amount, or just the amount from when long term started paying?

I just had to pay back from the date which I was approved for SSDI. I received the payment from SSDI then payed back the long term insurance company in a lump sum.

Lots of good info has been posted by other members.

I am under 65 and on disability. Talking with the SHIPP counselors was one of the best things for me. I wish I had contacted them sooner. It would have saved me a lot of distress and anxiety. I had to talk with them multiple times and read the stuff they suggested in order to digest and fully understand all of the information. And I have a master's degree.

About the need for health insurance coverage after employment and before Medicare:
My employer had long term disability insurance, so my employer was able to continue my commercial health insurance for about 2 years (yes, two full years) while my Social Security Disability claim was being processed. Then, I paid for my same commercial insurance through COBRA. It wasn't cheap, but it provided continuity. After 5 months paying through COBRA, I was enrolled in Medicare since my disability claim was approved.
If you go from employer-paid to COBRA self-pay, you must do so quickly, within a limited time frame.
[It occurs to me that COBRA might be run by my state. Maybe your state government has a similar program with a different name. COBRA makes it possible for an employee to continue to purchase their exact same health insurance after they are no longer employed by the entity that provided their health insurance. It is not cheap. I live in Pennsylvania.]
I'm not sure if the following is relevant or not: When I called companies to ask about medicare supplement insurance, they all asked me if I had currently had health insurance. I wonder, if you go without insurance right before you qualify for medicare, then can the companies charge you more for their medicare supplement?
A SHIPP counselor could probably answer that.
When you first enroll in Medicare, be very, very careful about the secondary insurance that you select.
The SHIPP counselors, mentioned by another member here, really helped me. They told me to NOT get an "Advantage" plan. They said to use original medicare with a "Supplement" insurance, which are sometimes called "gap" plans, and a Part D plan for drugs. You give up a lot of control and a lot of options when you enroll in an Advantage plan. You have to stay within their network of doctors and facilities. This seems to be the same advice that the other member here got from their SHIP counselor.

My insurance costs are a hefty chunk of my monthly income, but it only takes the cost of my physical therapy sessions to break even. (I don't have cancer; I have a chronic disease.)

That's all I can think of to contribute, except my good wishes, so good wishes to you and any other readers, too!

Lots of good info has been posted by other members.

I am under 65 and on disability. Talking with the SHIPP counselors was one of the best things for me. I wish I had contacted them sooner. It would have saved me a lot of distress and anxiety. I had to talk with them multiple times and read the stuff they suggested in order to digest and fully understand all of the information. And I have a master's degree.

About the need for health insurance coverage after employment and before Medicare:
My employer had long term disability insurance, so my employer was able to continue my commercial health insurance for about 2 years (yes, two full years) while my Social Security Disability claim was being processed. Then, I paid for my same commercial insurance through COBRA. It wasn't cheap, but it provided continuity. After 5 months paying through COBRA, I was enrolled in Medicare since my disability claim was approved.
If you go from employer-paid to COBRA self-pay, you must do so quickly, within a limited time frame.
[It occurs to me that COBRA might be run by my state. Maybe your state government has a similar program with a different name. COBRA makes it possible for an employee to continue to purchase their exact same health insurance after they are no longer employed by the entity that provided their health insurance. It is not cheap. I live in Pennsylvania.]
I'm not sure if the following is relevant or not: When I called companies to ask about medicare supplement insurance, they all asked me if I had currently had health insurance. I wonder, if you go without insurance right before you qualify for medicare, then can the companies charge you more for their medicare supplement?
A SHIPP counselor could probably answer that.
When you first enroll in Medicare, be very, very careful about the secondary insurance that you select.
The SHIPP counselors, mentioned by another member here, really helped me. They told me to NOT get an "Advantage" plan. They said to use original medicare with a "Supplement" insurance, which are sometimes called "gap" plans, and a Part D plan for drugs. You give up a lot of control and a lot of options when you enroll in an Advantage plan. You have to stay within their network of doctors and facilities. This seems to be the same advice that the other member here got from their SHIP counselor.

My insurance costs are a hefty chunk of my monthly income, but it only takes the cost of my physical therapy sessions to break even. (I don't have cancer; I have a chronic disease.)

That's all I can think of to contribute, except my good wishes, so good wishes to you and any other readers, too!

You are v lucky! I did see a SHIP person locally re my D drug plan and sadly, she was no help and actually was quite wrong.
I had been a RN and knew her numbers and pricing for the drugs couldn’t be realistic. It was kind of bizarre!

You can check Medicare part D drug costs yourself at Medicare.gov by using zip code under check plans. No account necessary. If you’re used to group health plans be prepared for some sticker shock.