When Medical Insurance Benefits Max Out

Lately, I have started worrying about what will happen with my medical treatments when my medical insurance benefits become maxed out.

I am currently working FT with intermittent medical leave and carry my medical insurance through my employer (my husband is self-employed and does not have medical insurance). I noted that my insurance plan carries a maximum lifetime benefit of 2 million dollars. I just received a bill for chemo for the month of December and my insurance company paid out $248,000. I just had 2 cycles of cyberknife with an estimated bill of $300,000. Each PET scan costs approximately $13,000 of which I've had 3 since being rediagnosed Stage IV this past October.....not to mention the CTs, MRI, biopsies, port insertion, and other special procedures & physician bills. PLUS my treatment from 6 years ago when I was originally diagnosed. I can only imagine that I am fast approaching my lifetime maximum. I'm afraid to call my insurance company to ask them "how much I have left".....and I really don't know much about SSI, disability and the like.

Can someone please point me in the right direction as to what is available to cover my medical bills when I hit this point or decide to go on disability?

Does SSI pay for medical treatment or is it just a supplemental income? How long does it take to get it? If SSI does not cover treatment, where do I get medical coverage of some sort? Am I denied medical treatment in the interim? Is medicare an option for us under retirement age? Is medicare available right away if I get SSI and am disabled to cover medical treatment?

My head is spinning.....I have tons of questions...and I just don't know where to turn. PLEASE HELP!!!


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Knowledge is power. It has been my experience thus far that the things I didn't know about (yet) were the ones that caused me the most angst. Yet, when I learned the truth, they weren't so bad after all.

I suggest you take out your handy dandy notebook and start doing some research. If it's too much for you to handle mentally or emotionally, annoint a well meaning, trust worthy friend/family member to do it. First step, find out the deal-e-o on your insurance. Second step, look into SSI and all other 'alternate' programs out there to see how/when they will kick in. I was very successful looking up all info like that on-line (sometimes the phone reps are less than stellar and have the personality of a surly prison guard with tight underwear). Once you have it all there in black and white, you will feel empowered. I pray the answers are not nearly as scary as you predict...and that it is one stress you can cross off your list!


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Dear rmcg, It's SO confusing and stressful isn't it!
Here are some links to get you started researching
SSI/SSDI and medicare.

Some basic info that these sites will expand on:

People who are disabled and are under the age of 65 are eligible for Social Security Disability Income (SSDI) and/or for Supplemental Security Income (SSI) if SSDI does not equal a certain amount or if ineligible for SSDI based on limited employment contributions.

People with stage IV cancers who are under the age of 65 are fast tracked for eligibility based on the Social Security's Compassionate Allowances program. You can apply online, most of us received eligibility awards within a few weeks of application. (Some within a few days, mine was 7 days)

People who receive SSDI and/or SSI are eligible for Medicare after a 24 month period which begins on the date of disability determination. There is work being done now to expedite this process and eliminate the 24 month waiting period. Something to keep on eye on. There are some trial programs in place now to expedite Medicare eligibility ... the states and cities for this program are listed in one of these links.

Each state has differing eligibility rules and coverage for Medicaid (healthcare funded with federal $ but managed by and sometimes augmented by the states) which often provides healthcare coverage during the Medicare waiting period. You can probably find some info for your state on its website to get you started.

The other place to seek info to help sort through some of these questions is

One thing I just learned about health insurance lifetime caps is if your employer changes insurance providers, your cap becomes whatever the new policy cap is ... the cap is not accumulative across plans.

For example: if your policy is with Aetna and has a $2 million lifetime cap and you've used 1.5 million under that plan THEN your company changes to Blue Cross/Blue Shield with a $2 million lifetime cap, you would have a new $2 million lifetime cap under the new policy.

I just experienced this in January and it was a relief to receive this info. I don't know if it applies to you but thought I would include the info just in case.

There are other medical programs available as well which maybe you can begin to look at after you get through some of this info ... Patient Advocate may introduce some of these to you.

Let us know what questions come up for you, I'm sure there is a WEALTH of info available here from our collective experiences with all these issues.

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What was said up top is absolutely correct--and very easy with our dx. You won't run into all the problems you hear about and probably won't even need a lawyer.

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Yes this is scary stuff, but like what has been said, once you start finding out the facts it may not make you feel a lot better but you at least can deal with reality, not worries.

I called my insurance company and asked how close I was to my max, I am ok for now, since I have a $5 million max. And hopefully I will be on Medicare by the time I max it out. I am starting to receive my SSDI next month. I applied over Christmas and got the award letter just a few weeks later, so I knew it was in the pipeline.

I am currently receiving disability payments thru my work. I was lucky enough to have purchased the short term policy last year in May. I decided to take disability leave in early Oct, but had to tough it out until Nov 1, because the policy had a six month exclusion period for pre-existing. It converts to LTD this month.

Now my benefit from work will be reduced by the amount of SSDI when it kicks in. And there is some way the benefit will be reduced if I get a payout on my retirement benefits, which I forgot about! I am waitng on a call from THAT office today to see what it will look like.
I worked for a church group and they have excellent benefits.

I had a pleasant surprise when I went to my credit union before I left work ( actully it was this info that helped me make the decision) to empty out my IRA to pay some bills. I had a couple of loans, and I found out they were all covered by the disabilty insurance the CU requires on all loans.

It was a hassle gettting all the drs statements. etc, but now that is one more monthly chunk, (about $400!) I don't have to worry about.

And you might want to check the actual costs that are being paid out by the insurance. My facility charges $3500 for a Pet, but accepts about $1900. These numbers may be off a little but its the best I can come up with off the top of my head.

I hope this helps. I was so worried too. I still have worries, like how am I going to continue my health insuarance cos I have to start paying for it this month if I want to keep it. My former employer was required to pay until now.

But like it has been said, find out the facts, and get another person to help if you can. We have enough to "be going on with " w/o all those phone calls/web searches!

Keep a track of who you talk to and when. I got a note book to help me keep phone numbers in one place, instead of 20 post its!

Good luck!


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Dear rmcg .... I just did a quick search of NJ funded healthcare for cancer ... I was just curious and thought I might have a couple of links for you ... what links I have for you!!! OMG New Jersey actually has a Comprehensive Cancer Control Plan ... for not only prevention, but also treatments AND quality of life!!

Here are two links for you ... one is an application for hospitals to use to receive funds under a new program BUT it describes the services that will be available and gives contact info that you can use to get more info. Looks like the state will fund 3 comprehensive cancer centers (you know NJ, probably 1 north, 1 central and 1 south). Goal is to make sure all NJ citizens have access to Gold standard care whether insured, under insured or uninsured!
The shore AND comprehensive quality cancer care.....I may have to move to Nesco!!!! Let me know what you discover.
Has anyone heard of other states doing this????



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Thank you so much for all of the info & links to get me started. It is very scarey for me to even think of going on disability....although I know this is where I am headed. Part of me wants to live my life without the added stress of work....but another part does not want to give it up for financial reasons. It is just so overwhelming for me to even begin the process.

I am blessed to have all of you as an incredible wealth of information & support.....let the web surfing begin!

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I was laid off last October and I am on Cobra right now that will end next May. I had no idea there was a 24 month waiting period for Medicare. Does anyone know about Ohio? When my Cobra ends what will happen to my healthcare? I had the idea that SSDI and Medicare went together. Oh dear!!

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Dear Laurie,
You can extend Cobra to 29 months if disabled, however, the company has a right to collect up to 1 1/2 times the amount you now pay for this extension.
You can look at the links above to see if Ohio has addititional rules for Cobra .. it will be listed on the
Federal site by state.

The Medicare 24 month period starts at the point that SSDI determines your disability -- so if you were determined disabled as of Oct. 08, but didn't apply for SSDI/SSI until July 09, the period would start Oct. 08.

There is also work being done to expedite the 24 month waiting period for Medicare so keep an eye on this activity through Congress.

Hope this helps!

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Under the health care reform plan proposal in Congress, no family would ever again worrying about going bankrupt because cancer treatments had blown through their insurance plan’s life-time cap on reimbursements. No parent would have to worry that her twenty-something might be in a car accident and then find himself in a situation where he/she received subpar care because he didn’t have insurance. No one would have to fear watching a loved one die in screaming pain because the doctor never explained that “palliative care” was available.

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We just got back from Washington and one of the topics was the 24 month waiting period. In most forms of the new health care reform bill--there are three in the House and two in the Senate--the waiting period is phased out BY 2013. We told them that didn't help people diagnosed with metastatic bc today. After they deal with health care, there will be a cancer bill and we may ask they include an immediate phase out of the waiting period for people with life threatening cancers. It seems like there is a huge need for this and we have to explain it to them. I think we really can make a difference.

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Dear Lorri,

I looked at some of the links but I may be research challenged because I couldn't find the state of Ohio additional rules for Cobra. Any clues? Thanks for the tip on the 29 months extension. I have a call in to our state senator (maryjo Kilroy) as well. Evidently she has a staff member who helps people with these issues. I want to start now to sort this out while I am still relatively clear headed...lol. Thanks all, for your advocacy. Please keep posting the news on this issue.

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Medicare starts 24 months from when you start receiving a check for Social Security Disability, not from the time you are disabled. I was disabled in 2/2005, SSDI started in July 2005 and got in Medicare in July 2007. Each state has COBRA regulations, so you need to use the COBRA to keep your medical until you are eligible for Medicare and start the process for SSDI. You can apply online.

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Are you in NJ? I am printing these out right now. Thanks! XO Barb

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Duh, RMCG is in NJ. I'm on board now. Takes me a minute. Barb

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Because I was (am) self-employed, my disability payment from SS is $727 per month. My house payment is $659 per month. I am working very little now but I am allowed to earn up to $700-900 per month (depending on which employee I talk to at SS). When I can no longer work at all, how will I keep the roof over our heads? I've lived in the same house for 38 years and can't imagine losing it. That would kill me quicker than the cancer.

Medicaid covers my treatments but there is no other income outside of a small job a few times a month. Has anyone else faced this type of problem? Right now, most utility bills are paid for on my creditcards. Not a good thing to do, I know, but when there is nothing else...

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