I know when I first joined this site there were a lot of discussions about medicare and disability in the US. So, here are my questions for US ladies - and if someone also can find those old posts - even better. (I'm in AZ)
I am currently covered by my husband's employer insurance - they just announced that my oncologist and entire center are no longer "in network" as of Feb 1. (great notice).
Does it benefit me to apply for disability (I know we are eligible due to our diagnosis) and go on Medicare?
Does this help me stay with my current doc?
Does it take a long time?
We are lucky to have numerous options here in this state - so it might just be easier to change to a new team that is in network. As hard as it seems to leave the people I love at the center, it does seem infinitely easier and less disruptive to change.
Any input appreciated, Allison
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I live in scottsdale and had the exact same issue. I went on disability 2 years ago. Covered immediately with a two month delay for coverage to kick in. Was on my husbands insurance as well. They also moved carriers and my doctors weren’t covered. Good thing is if you’re on Medicare which I was immediately on after a year on disability, is that Medicare is in first position if my husbands company has more than 20 employees. So I was immediately covered. And now his company also moved again and I’m again covered under his insurance. Since Medicare pays first , and his second, I’m pretty much 100 percent covered. Def get on disability. I was an executive so my monthly SSDI is over 3500 a month
Thank you so much - who are you with now? I'm at Dignity and looking seriously at UA Banner
I also just spoke with my friends husband who is an insurance broker and he said to go ahead and apply for disability because it wont hurt anything and Medicare might approve me more quickly than expected.
He also encourage me to go ahead and interview some new docs and said that my insurance and Dignity might even kiss and make up at the last minute.
I had to be on disability for 2 years, then Medicare immediately kicked in. I love it, and most, if not all, doctors (especially oncologists) take it. I get traditional Medicare, NOT Medicare Atvantage. I can see any doctor, anywhere (In the US) that takes Medicare.
I've had mets for 6 years now but never looked into disability because I assumed I'd have to literally not be able to work to apply. Is that the case? I can't be still working can I? And how does Medicare compare to whatever you were on before, in terms of seeing the same docs and getting expenses covered?
There are rules about working which you'd need to look at at medicare.gov. You don't have to be 65 to receive the medicare, but I do believe you have to be on disability for 2 years. The answers are all in medicare.gov.
With that said, I'm on "traditional" medicare aka Medigap and that is wonderful. A bit more expensive than Medicare Advantage, but I see whatever doctors I want, where ever they are. No deductibles. I also pay for supplemental insurance, but it's not much. Completely worth it.
Allison, I'm sorry you are in this situation. I think when we apply or go on ss disability it takes a while, as in 2 years to qualify for Medicare coverage (if you are younger than 64 or 65). This might be old info but when I was dx stage 4 in 2019, this was the case (I was 55, now 59 yrs old ).
If I were you I'd call your oncologists office and explain the situation to see if they have any info or can help you make this decision.
Thanks for your input. I didn't apply earlier because I worked until March 23 - I owned half a business and had to find someone to buy me out. I just applied now because I wanted a clean slate after my buyout. I'll pray that I live long enough to get Medicare because this whole BCBS and Dignity Health fiasco is super stressful. I visited with the Oncologist about all this yesterday and he thinks that BCBS is pulling "in network" coverage from all "cancer center" operations because they feel like they are being overcharged. So, I would theoretically have to go to a private practice oncologist, a private lab, and god knows where for infusion. Sorry I'm ranting, it's post treatment steroid day.
Dignity and BCBS is my current coverage through my husband's company. I am not yet on disability (finished the application today) and I am 59 so not eligible for medicare until I get the disability approval plus (from what I gather here) a 1-2 year wait. So, I have an appointment scheduled with a new Oncologist in case Dignity and BCBS don't work out their contract differences by January 30th. I have a friend who is an insurance broker who will help me with plans if I get approved for Medicare.
It is so stressful to be on a treatment that is working and having to switch docs and leave the staff at the cancer center that I love...my infusion nurses are the best and since I have been going there at least twice a month now for 2 years its like leaving family. My oncologist was my sister's oncologist so I have known him for ten years.
My husband wrote to our State Senator Kirsten Sinema about the situation as she seemed to have some sway in a previous Dignity Health and BCBS contract problem in a different town last year. We will see.
I hope Sinema will take action and be a positive influence! What a mess this country's system is! Under completely different circumstances for me each time but I can relate to that "leaving the family" feeling. I loved my oncologist in NYC and his team were amazingly on top of everything, but we moved and I decided the commute was too muc, as much as I trusted and looked up to him. Fortunately I fell into good hands in my new state (another great team) but then he retired! SO, again a new doctor but this time with new staff because there was some kind of fall out that happened as a result of the shift. Several years later, luckily I love this doctor too, but her immediate team is unreliable with communications at times. It's been ok for several years until Dec '23. Suddenly my doc did not return from her time off, right when I need her the most, and I've had this interim doctor (who was not already at the hospital as an oncologist!). We have NO idea what's happened and they still don't even know when she is coming back. It's a complete mess and I'm getting more frustrated the more time passes. I'm actually starting to contemplate changing, or insisting on one of the existing oncologists because this one does not seem to have access to the trials (she was actually hired to create a new program) so I have no idea what all my options truly are. Starting Xeloda this week because too much time has passed already.
These situations of being forced to another doc or location are definitely less than ideal for all of us going through these treatments. We really do not need the stress it creates. I hope yours gets sorted soon in good time and you're able to stay where you are, and where you should be able to stay 🙏🏽
I'm not sure that this will completely answer your questions, but PAN Foundation has had a series of videos about Medicare. Maybe there are some answers to your questions in there.
I turn 65 next month so I enrolled in Medicare Part A, Part B, a Medicare Supplement/Medigap plan with BC/BS and Medicare Part D for prescriptions. StageIV Metastatic Breast Cancer is an automatic Social Security Disability Income approval. If you are not 65 at the time your SSDI is approved there is a 2 year wait for Medicare, unless you turn 65 sooner, before you can enroll in Medicare.
My employer provides Long Term Disability Insurance which pays 60% of my salary. Social Security approved my SSDI. The Insurance company approved my LTD. The amount SSDI pays me is subtracted from my LTD disability insurance benefit amount and the LTD Insurance company sends payment for the difference.
A non profit group, run by Attorneys and referred from my cancer center, called TriageCancer.org has an excellent webinar on Medicare and Disability coverage.
Your state will have a SHINE program or similar program where you can meet with representatives trained by Medicare to provide unbiased advice on your best Medicare options.
Additionally I found some great YouTube videos out there. MedicareSchool.com
The best advice I received as a cancer patient was to enroll in a traditional Medicare Medigap Supplement plan and not a Medicare Advantage plan. The Medigap plans allow you to see any specialists of your choice who accept Medicare without preapproval. This is crucial for people with chronic conditions who visit specialists often.
Good luck I found the Medicare and Disability education process time consuming and could be daunting but necessary to ensure good coverage.
My contribution to the above replies is to stick with original Medicare if that’s the route you go, and stay away from Medicare Advantage plans. A very trusted and reputable senior-insurance specialist gave my husband and me that advice when it was time to sign up and I’m so glad we did. Medicare has better coverage and especially since I now have stage 4 cancer. Plus he pointed out that if I move to another state, Medicare follows me where that might not be the case with a Medicare Advantage plan—and getting a different Medicare Advantage plan with such a pre-existing condition could be tricky.
It is still the case that if you get on disability under the age of 65, there is a two-year wait to get on Medicare. I am in an Advantage plan because under the age of 65, a supplement plan is way too expensive. I have not had any trouble at all with it, and I did move. I didn’t move out of state, but the plans were a little different, not by much. I am on a plan this year, a new plan, where my max out of pocket, either in or out of network, is $3400. That doesn’t include the massive amount our cancer drugs cost, but I’m on Orserdu and qualified for the manufacturer to pay, so I pay nothing for that. Also, starting in 2025, I believe the maximum out of pocket for prescriptions for the year will be $2,000. That should help a lot of people who don’t qualify for manufacturer help. Also, once you’re approved for disability, it won’t start until five months after approval, and you will actually get your first payment at month six after.
Good luck navigating the insurance/Medicare merry go round. It is not easy to make sense of it all. You can get a high deductible Medicare supplement plan that helps make the monthly premium a little easier to swallow if you are under 65. The deductible is 2200 or so.
What is your treatment? I own my own company and have stayed on private insurance to not pay for Ibrance, which is not covered on any of the Medicare Part D meds plans that I have seen. Check coverage for meds under whatever plan you select.
I am on Trodelvy - Ibrance seems like a lifetime ago (2019-2020). I doubt I will get Medicare anytime soon so I'm hoping my insurance and my Cancer Center figure out a contract.
My main concern is how to get covered while waiting for Medicare. I’m under 65 and keep working to have an insurance. My husband does not have a separate one. What will happen when I’ll go on disability? Will not afford to buy a private one.
First talk with your Human Resources Department/Employer to determine if they offer Short Term Disability Insurance and Long Term Disability Insurance with Employer Paid Health Insurance. My employer provided both Short Term Disability Insurance and Long Term Insurance with Employer Paid Health Insurance. They continued to pay for my Health Insurance while I was out on disability. I started with an Intermittent Leave under FMLA, then moved to STD and now LTD with SSDI and Medicare when I turn 65 next month.
If your employer doesn’t offer disability income coverage with health insurance you are still eligible Social Security Disability Income. You may be eligible for additional benefits under SSI. Contact your local Social Security office to understand your benefits. You may also be eligible for Medicaid or able to purchase a health insurance policy through the Affordable Care Act exchanges. Review your State’s website for Health Care Insurance guidance. There is always the more expensive COBRA option if you are able to afford or willing to pay for COBRA.
This is a lengthy process and takes a lot of work. I found it to be more daunting to navigate than the cancer treatment.
Thank you so much for your prompt and very helpful response. Will certainly follow-up with HR. Can you clarify re: intermittent leave? Are they sick days?
I have 5 sick days:(. STD through my employer and am paying towards LTD which ma expire after 2 years.
It sounds as if your employer might have some good benefits for you and may offer Employer Paid Health Insurance while you are out on Disability. Definitely call HR to speak with them. Also ask for a copy of your Employee Handbook. The Employee Handbook will provide details on your Short & Long Term Benefits and how Employer paid Health Insurance is handled while you are out on Disability.
Your HR department should also be able to guide you on how to notify them about an Intermittent FMLA. They will advise what you have available as paid sick days under FMLA. I used my paid sick days under FMLA. Sometimes I only took an FMLA hour of sick time here or there for Medical appointments other times a full day. I never exhausted my sick time, but under FMLA you are able to take unpaid time off if you exhaust your sick time. Your employer is able to advise.
Definitely check out TriageCancer.org a nonprofit run by Disability Attorneys with lots of good information on Medicare and Disability plus your State Government sites in addition to your HR Department.
Good Luck there is a lot to all of this. Navigating the private insurance disability world with my employer and the government disability programs was a Byzantine journey as difficult as navigating cancer treatments. Just glad I made it to Medicare next month. Phew!😅
I got disability over the phone almost immediately but I was already on Medicare so the actual $ difference was small like 350$ or less. As far as doctors I’ve been able to keep mine and never had a problem with M D Anderson. I do have a secondary from the beginning plan G united health. I never pay co pays nothing. ! I recently had two surgeries and rehab for over a month. Never paid anything. One lab bill 285$ that wasn’t coded right -that’s it…
If my cancer center becomes "out of network" and if my insurance comes after us for "balance billing" (a new scary term I learned this week) - I could be on the hook for $100k per treatment so $200k every three weeks. So, I am spending the day calling other oncologists and finishing my disability application - fun retirement activity
I hope you find yourself in a better situation. I don’t pay anything but when I got insurance I knew I had to have a supplement before the cancer. I get some meds for diabetes free from the company. Cancer I don’t pay for meds. I am lucky but pay some deductibles. Insurance related . Medicare charge monthly taken out of disability. I pay about 145$ for plan g monthly-united healthcare.
Patient advocates are (and have been for a while) trying to get Medicare to kick-in immediate after SSDI approval. (Plus speeding up the SSDI process to boot.)
Right now, you still have to wait for 2 years before that happens (after getting SSDI)... unless you are of Medicare age. So that is not an immediate solution for you, it seems, unless you are older and getting on Medicare is not about your MBC with regard to eligibility.
When you DO go on Medicare... be very careful if you select a Medicare Advantage plan over Traditional Medicare. Medicare Advantage is run by for-profit companies and in-network stuff applies. (And denying care is the business model.) Not the case for Traditional Medicare.
I live in South Dakota, USA and was diagnosed stage 4 denovo in 2014. I was 51 years old. The oncology clinic that I go to has wonderful patient advocates who helped me with all things insurance, disability and help getting my medications covered. They filled out all of the disability papers and at the start of each new year they apply for grants, etc. to make sure that the co-pays on my meds are covered, usually at 100%. If you have patient advocates at your clinic please reach out to them, they are a true blessing on this crazy journey!!
Thank you - we have financial counselors at the cancer center and they have been very helpful but this BCBS thing has buried them and the best they can tell me is that they are hopeful it will resolve and that they have my continuation of care due to my diagnosis paperwork all ready to go. Sigh..this is making my poor stressed out husband even more stressed out. Off I go to finish that disability application!
apply right away. Once approved for disability, it may take two years before you can get on Medicare. Look into it online or contact a disability attorney. Blessings
Update. Well BCBS and Dignity Health could not come to terms and didn't even grant an extension so I was fortunate to get in this past week to a new oncologist and center that are "in-network" and able to maintain my Trodelvy treatment schedule. They seem like nice people and my oncologist had already coordinated and spoken with my new doc prior to my appointment. This was so beyond stressful and my more husband has been completely shaken by it all. I am so grateful to have a good plan forward.
I'm going to have to send some cookies to those amazing infusion nurses who I will miss immensely
As for disability, it appears that the wheels are slowly turning as they have asked for more information. I will probably go in person this week to make sure I get everything done correctly.
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COST OF TREATMENT !
Enhertu infusion #2
FINALLY, APPROVED FOR DUAL COVERAGE OF MEDICARE WITH FULL MEDICAID
insurance 
Just a thought
