Is anyone else with cancer getting disability?

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.

Hi Katie,
I was STD for 6 months through work that transitioned to Long Term. My LTD company also required SS disability. I applied directly with social security. My reduced salary is basically split between the two entities with SSD paying a little more than half per month than the LTD. Once they find out that I was not fraud, it took about six weeks. The SSD website states that the average wait time is 200+ days. Also, you are paid once per month at the end of the pay month.
It’s a process.
Good luck with your pancreatic cancer. I had 9 FOLFIRINOX then the Whipple then three more FOLFIRINOX. I just had my six month scan and it was clean.

Best,
Steve

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.

I can't speak to most of what you mentioned, but I can share my own experience re Medicare. I was already on Medicare when I was diagnosed in late March. Some years before, I had switched jobs, then went back to my earlier employer. I was gone only three months, but they wouldn't put me on the group health policy; they ordered me to go on Medicare. In retrospect, that was a great move. I chose traditional Medicare parts A and B, a drug plan part D, and a Medicare supplement. In my experience, I've received extraordinarily good coverage. I was hospitalized for three months in 2020 with myocarditis, likely caused by covid (although no positive covid diagnosis). Among other things, I had two open-heart surgeries, ECMO therapy for a week, a temporary pacemaker and then an ICD, multiple procedures on my left leg to fix damage from the ECMO tubing, and weeks in ICU and rehab. My total, undiscounted bill was $1.7 million. I know this because I had to obtain a copy of the bill in order to claim coverage on a hospitalization insurance policy through my employer. My total out-of-pocket charges were less than $100. This time, since my diagnosis in the spring, I've had six surgeries/procedures, a week in the hospital, and 14 chemo rounds, plus plenty of MD visits. I've paid nothing out of pocket since diagnosis. In both cases, I've never been denied care or required to get pre-approval to see a specialist. The healthcare system we use accepts Medicare patients. The drug plan part D is a little different because of the donut hole thing (which I think they're supposed to be fixing). I do pay a copay for meds. Most of the time it's very little, but I'm on Xarelto, and that one gets pricey.

I know that some people really like Medicare Advantage, but I will never go to an Advantage plan; the coverage with traditional Medicare and a supplement is superior. I know you said you have a few years to go, so of course you'll need to check the current coverage when you go to select a plan because things do change. I will say that our premiums are up there. Medicare comes out of our SS checks each month, so we never "see" that payment. On top of that, we pay for the supplement and drug plans. But to us, it's worth it not to have huge copays.

I'm glad others responded to the OP re disability coverage. I did short-term disability when I left work in the spring (I couldn't teach wearing the infusion pump--too dangerous to be around kids). I didn't seek LTD because Social Security was going to offset it to the point that I wouldn't have gotten any LTD payments, so it wasn't worth applying. I was already on Social Security; once you hit full retirement age, you can work as much as you wish and still get your full benefit. So SSDI wasn't an issue for me.

@katiegrace, you posted two questions: How will I know if and when I am no longer disabled? What are the chances of me getting off of disability?

I would think the first would involve your MD, who would have to make that judgment and supply the info in writing to SSA. Re the second, this might be a question to consider: If you're 64 now, you can already apply for Social Security. It would probably be an easier process than applying for SSDI, but it would be a permanently reduced benefit, so there are definitely pros and cons to consider. When will you reach full retirement age? I wonder whether the SSDI review would come back telling you to take regular Social Security instead. As I said in my other post, I didn't apply for long-term disability, so I have no good info on this--I'm just wondering.

I'm 60 now but was diagnosed in Jan 2020 with Pancreatic Cancer, but it's NETs, Neuroendocrine. No cure for this type but can be manageable. I filed this past August and discovered in the process about CAL (Compassionate Allowances List), if you're diagnoses is on the list it is an easy and quick approval process, mine took just 7 weeks. My full retirement age is 67, my disability payment is equal to full retirement. They also back paid me for the entire year of 2023 since apparently I've been eligible since Jan 2020, so you might get paid from your diagnoses date if it happened in this year depending on short term disability rules. I have no plans to come off disability given there is no cure and I'm hoping to have another surgery since it has spread to one quadrant of my liver and a new one in whats left of my pancreas. I did not use Allsup which I found out is available to me as well, they will be reaching out to help with Medicare process which will kick in at the end of 2024. I agree with other on Medicare Advantage, well it is good service it also limits access and can become problematic if traveling.

Thankful for your response. It was so helpful. So glad your scan was clean.

Ncteacher,
My full retirement age is 66 and 10 months.
My ltd company, told me that if I continued to be disabled, I would be eligible for ltd through them until I reach age 67.

Mark,
Yes, I would think you could be on your wife's health insurance if she would go back to work. Currently my husband is working, and I am on his United Healthcare health insurance.
I was told - if neither me nor my husband (age 60) worked - we could apply for Obama Care, and the premium would be very low (if you have no income).
I was told Obama Care covers pre-existing conditions.
When it comes time to apply for Medicare, I was told to talk with SHIP (State Health Insurance Assistance Program)-it is a free program and they will help a person figure out what is the best plan-I was told to stay away from a Medicare Advantage plan.

My LTD company also required me to apply for SSDI thru Allsup. Allsup was great to work with for both SSDI then early Medicare. I had to provide them with extensive medical info initially (online forms) but then they handled everything. SSDI is also very familiar with Allsup and works well with them. My LTD carrier picked up the tab as it saves them money. They deduct my SSDI payment from my LTD payment.

As for Medicare options, I chose original A & B plus D and a supplement plan. I wanted the best choice of providers for cancer and I didn’t want to lose any of my current providers that are in various health systems. No problems so far. Have only been on Medicare a few months. Supplement plan does not apply to drugs so check your copay on cancer meds (pills) and anything covered under part D. Can be very expensive, but some manufacturers will supply to you for free if you qualify. Chemo and in office injections are generally covered under part B and supplement (verify your specifics with a broker). There are cost estimation tools on Medicare.gov There are lots of Medicare brokers that can help you free of charge, but use one that is connected to several carriers for the best comparison and advice. Ask who they are affiliated with.

Also, I was told that the supplement plan carriers only have to accept you when you are first eligible for enrollment whether due to disability or because you’re 65. After that you can be denied for pre-existing conditions. So if you take Medicare Advantage HMO or PPO (part C) then try to switch to A & B plus a supplement plan later you will most likely be denied by the supplement plan due to cancer or any other expensive conditions. Supplement plans are offered by private for profit companies and we are a financial burden for them. You need a supplement plan with A & B or it’s too much out of pocket. I was advised to start out with A B D and supplement and if the premium becomes unaffordable you can always downgrade to Medicare Advantage during open enrollment each year. Medicare Advantage is a better deal financially but less provider choice and lots of red tape getting authorizations. You get what you pay for.

Hope this helps.